Team Danica

Mystery Diagnosis

2012-02-29T11:17:00.002-05:00

Alone we are rare, Together we are strong.

I have hesitated writing this post even though so many of you have asked for an update on my appointment last Friday with Dr. Brad Tinkle, the geneticist at Cincinnati Children's. It has taken me a few days to process all the information I was given. There is also a part of me that feels like when I type these things out loud it makes them more real or true than they already are. He confirmed the Ehlers Danlos Syndrome diagnosis I received from Dr. Henderson as well as diagnosing several other comorbid conditions including POTS and Mast Cell Activation Disorder. I cannot begin to tell you how it feels to have all these crazy symptoms for so long and finally have someone look you straight in your eyes and tell you they are REAL and connected.

Today is Rare Disease Day. I have a rare disease. It is chronic. It is systemic. It is painful. It is debilitating most days. I finally have a name for it and a group of specialists who are learning more and more every day about how to improve symptoms and quality of life for those of us who are suffering. Much of my appointment was spent talking about new medications I should add, current medications I need to wean off of and the other doctors I need to consult with to make a comprehensive plan for treatment. Most of this plan is on hold until after my tethered cord surgery on March 28th. Dr. Tinkle's exact words were, "This is going to be very hard." I smiled. I can do hard all day long.

I have a magnet with a quote on it that I have moved around with me since college. It has always reminded me that life is unfolding in perfect time and the answers to life questions will come when I am ready to live them and not a moment before. It is a little ironic I only have a tiny little dorm fridge now and my magnets are put away, but I know the Rilke words by heart.

"Have patience with everything unresolved in your heart and to try to love the questions themselves as if they were locked rooms or books written in a very foreign language. Don't search for the answers, which could not be given to you now, because you would not be able to live them. And the point is to live everything. Live the questions now. Perhaps then, someday far in the future, you will gradually, without even noticing it, live your way into the answer."

I have lived the questions. The answers were in many ways not available over a decade ago when I first became very sick. Truly, I never would have found this help without Danica's journey and the community of others who are walking similar paths. I had given up in almost every way of even talking about my suffering. Only those closest to me could see how affected I was every day by my crippling pain and fatigue as well as a myriad of other body symptoms. Over the rest of this week I plan to post each day about one of the rare diseases I have and tell in detail about my symptoms, how they affect my daily life and what we will try to accomplish through treatment. I know many of you read this blog for the high points or an emotional or spiritual take away and reading or listening about rare medical conditions is not up there on your list of things to do. I would ask if you have followed this blog for long and are continuing to pray for our family that you try to take in some of the information. Ehlers Danlos Syndrome is a highly undiagnosed disease. Often patients have been told for years they have fibromyalgia, chronic fatigue and myofascial pain syndrome or that they are just plain depressed or have panic attacks and mood disorders without understanding the total physiology causing widespread pain and a multitude of other symptoms. By spreading awareness I hope and pray even one person who is similarly sick and hurting or who knows someone who is reads this and begins to connect the dots and find the help I have waited so very long for.

Alone we are rare. Together we are strong.

By His Grace. Through His strength. Our hope remains!

Blessed

2012-02-27T14:14:00.000-05:00

“Sometimes I need only to stand wherever I am to be blessed.” Mary Oliver

I snuck off the couch during family movie night to snap these shots. My heart swells with gratitude and praise for exactly where we are.

The other side of prayer

2012-02-23T20:52:00.000-05:00

I'm laying in bed in our hotel room in Cincinnati at the Marriott Springhill Suites where we have stayed over and over again the past two years. We have tried others on the Kentucky side of the river to save a few dollars, but they are a little yucky and scary, and so we made a pact last time we would just stay at our "home" hotel from now on. The evening sun is falling in a perfect slant across my bed. I feel nostalgic in a very strange way.

Today we saw Dr. Crone, Danica's neurosurgeon, for the last time. He is retiring. I know he treats all his patients with care, but, like everyone who has been a part of Danica's story, he expressed how truly remarkable her case is and how miraculous her healing has been. The brain and cervical junction MRI was as clear as he has ever seen a year and a half post decompression. Yes, there is fusion and a little sling holding her cerebellar tonsils from slumping, but her CSF flow is amazing, and her brain stem is safe. The best news is he does not believe her spinal cord is in any way tethered. The remaining bladder and bowel issues may be from the "damage" during her early development when her Chiari was causing so many neurological symptoms. He recommended we follow up with a pediatric urologist but also reminded us time may be the answer. Then we heard him say the most amazing words, "If she remains without other symptoms you do not need to have another MRI for three and a half years."

Literally thousands and thousands of prayers have been offered up for Danica and our family. If you are reading this now you are probably counted among the dear people who have lifted us up. Where do we go from here when the specific pleadings have been beautifully answered through blood, sweat and tears? We must go back and praise our God who does all things well and who answered in ways exceeding, abundantly more than we could ever ask or think.

As I booted up my computer to write this post I was reminded in an email about what the other side of prayer should look like. Ann Voskamp wrote this in her book One Thousand Gifts:Finding Joy in What Really Matters:

When we lay the soil of our hardlives open to the rain of grace and let joy penetrate our cracked and dryplaces, let joy soak into our broken skin and deep crevices, life grows. Howcan this not be the best thing for the world? For us? The clouds open when wemouth thanks...

[Consider how]Mary, with embryonic God Himself filling her womb, exalts in quiet ways:"My soul doth magnify the Lord" (Luke 1:46). So might I! Something always comes to fillthe empty places. And when I give thanks for the seemingly microscopic, I makea place for God to grow within me. This, this, makes me full, and I "magnifyhim with thanksgiving" (Psalm 69:30).

What will a life magnify?The world's stress cracks, the grubbiness of a day, all that is wholly wrongand terribly busted? Or God? Never is God's omnipotence and omnisciencediminutive. God is not in need of magnifying by us so small, but the reverse.It's our lives that are little and we have falsely inflated self, and in thankswe decrease and the world returns right. I say thanks and I swell with him, andI swell the world and He stirs me, joy all afoot.

This, I think, thisis the other side of prayer.

This act of naminggrace moments, this list of God's gifts, moves beyond the shopping list varietyof prayer and into the other side. The other side of prayer, the interior ofHis throne room, the inner walls of His powerful, lovebeating heart.

I am in a great deal of pain from the drive here and the walking and the waiting and the stress of this trip. In the back of my mind I recall all I've learned about "occult" tethered cord and worry maybe this man who was so right about so many things regarding Danica might be wrong about this. I now have to move forward in my mind to my appointment with Dr. Tinkle tomorrow and my surgery in March. I think about going home. Just like Sunday night when Dan and I were away my throat has not been sore, and I have not had swollen glands since leaving. This confirms for me there is something in the basement where we live really causing an allergic reaction. I worry it might be the subtle dampness and lack of airflow that only people with autoimmune issues are really bothered by. I worry it might be Delaney's puppy, Twixy. I dread going back, because I really have felt awful since I moved home. The area of my fusion hurts so bad. My hands are shaky. I have gained over ten pounds since I went on daily prednisone, and I feel the self loathing creeping in. I am many things, but I am not "fat". I won't be. Earlier this week I tried not taking my meds because I wanted so badly to get off them. As the day went on the pressure built in my head, and I knew these were in no way placebos. I NEED them. I feel frantic to find a way back to my size eight.

My chest begins to constrict, and I forget to breathe until I hear Danica humming a minuet in the bathtub. It's a grace moment. I check my email and see a dear family has made a donation for my upcoming surgery, a gift reminding me He will make a way. He has always made a way. Gratitude begins to calm me. How am I so easily distracted from our celebration of amazing news for our girl? Have I learned nothing? Am I really back to doubt this soon? I return to read Ann's words. Focus on Him. Praise Him. Look at His heart. I feebly begin to thank Him for the great things He has done in us and for us and through us. How can I not live on this other side of prayer having witnessed powerful healing in Danica's body these past years? How can I not believe this too is still possible for my own fragile health? Peace and joy can only be found when glorifying Him and enjoying Him. This is why we are here. This is what He made us for.

Tonight I ask that in the same fervant spirit you have made requests for us you will as generously offer praise. We have reached an important marker on this journey, and we add another stone to our altar of remembrance. Our hearts swell in thankfulness to our good God who does all things well. We pack our bags tomorrow and set out again. We cannot guess what is next. It may be a valley of shadows. It may be a steep mountain to climb, but we go where He leads. We will glorify him. We will enjoy Him. Our destination is sure. Our hope will not disappoint. Won't you continue on with us?

Calvary Love . . . in my husband

2012-02-21T13:55:00.002-05:00

When I think back over the last thirteen years of my life there is one constant thread binding the story. Before I really knew what Calvary love really was; Before I had tasted real Grace that changes you from the inside out; God gave me Dan. I separate my life into chapters easily. I know telling the truth out loud about those years before Dan will someday be important. For now, I can only tell you Dan's love saved my life as surely as God's love saved my soul.

"I do" are the two most famous last words
The beginning of the end
But to lose your life for another I've heard
Is a good place to begin

We WERE able to get away on Sunday afternoon. Our plans changed last minute, because I was still feeling pretty blah and Dan's back had been hurting. Knowing how much driving we had coming up for our Cincinnati trip tomorrow we decided heading north to attend the "Songs and Stories" concert was just too much. I was very disappointed not to be able to share that experience with Dan, but I knew we needed to just BE together more than anything. I was able to give the tickets away to someone who would really be blessed by them which gave me great joy. We decided we would head to our anniversary spot, Gervasi, for a Sunday supper. It turns out God had been planning this perfect getaway for us. He took care of every detail, and we ended up staying the night in one of Gervasi's new Villas. It was like we were home. It was simply amazing in every way, and we both agreed it was the best date we have EVER had.

One of the enduring things about our marriage is how much we truly like one another and love being together. We do not take this for granted after all this time and all we've been through. Walking down the brick path after our amazing meal, the sun setting and the torches lighting the way back to the Villa, we held hands and all was right in that moment. Curled up in the big four poster bed watching the fire, I was able to snuggle beside Dan with my head on his chest for the first time in months and months and listen to his dreams for our family. He shared his new found peace with where we are now. He asked me if I believed we would really move past all this in the future. He told me why he does.

My heart trusts him. To hear him verbalize something about our tomorrows besides being "stuck" gave me the very hope I was needing to move forward. He rescued me and faithfully loved me when I was so unloveable. He has always believed in the promises we made. He has laid down his life, his wants and his needs over and over again to care for the girls and I. He's shown me Jesus when I couldn't see Him anywhere else.

'Cause the only way to find your life
Is to lay your own life down
And I believe it's an easy price
For the life that we have found

And we're dancing in the minefields
We're sailing in the storm
This is harder than we dreamed
But I believe that's what the promise is for

Tomorrow morning we will get in the car with our little Danica Jean and make the long drive to Cincinnati again. We will watch Danica be put under anesthesia and taken away from us for several hours. We will sit together waiting and praying. We'll go to recovery, and I'll cry when I see her sweet face. Thursday we will head back to the hospital to see Dr. Crone, Danica's neurosurgeon, to go over the scans. We will wait and wait. We will see children and families all around us who know all too well what these days do to your spirit. We will give a sympathetic glance to many, and they will understand our hearts. I will pray for them as they pass us crying their own tears, wearing their own battle scars from a story they would give anything to rewrite a different way for their child. We will go into a small dark room, and Dr. Crone will put up the images of our girl's brain and spinal cord on the wall. I will hold my breath waiting for him to speak.

So when I lose my way, find me
When I loose love's chains, bind me
At the end of all my faith, till the end of all my days
When I forget my name, remind me

Friday morning I will see Dr. Brad Tinkle, the geneticist at Cincinnati Children's who specializes in patients with genetic connective tissue disorders like Ehlers Danlos. I have a million and one questions to ask. I am not well versed in this new challenge. I want to be equipped to lived the healthiest life I can with the limitations God has given me. I want to give Danica the best chance too. I know this means other big changes for us and our family. I am trying to prepare my heart and mind for the responsibility and gift of seeing this gifted doctor.

Through all this my Dan will be there, sharing in each moment and loving me and supporting me even when he cannot understand or does not agree. We will drive the same roads home mostly in quiet. We are always completely sapped of strength and feeling a little lost no matter what answers we receive. We are always reminded this is a life long journey God has asked us to take. We go back again and again to His faithfulness and mercy to us as we put one foot in front of another. I will reach over and rub his neck while he drives. We will quickly steal a glance and say the words that could so easily lose all meaning but do not, "I love you." I will put on a CD of our life songs, and we will hear Andrew Peterson sing about us,

'Cause we bear the light of the Son of Man
So there's nothing left to fear
So I'll walk with you in the shadowlands
Till the shadows disappear

'Cause he promised not to leave us
And his promises are true
So in the face of all this chaos, baby,
I can dance with you

I look at my husband, Dan, and see more than human love. I see Calvary love. We will keep dancing. We will keep sailing. We will keep doing hard things because we promised and His promises are true. Our hope remains.

11 years . . . Still Dancing

2012-02-21T10:11:00.000-05:00

I am really too sick to write what is on my heart tonight. I have a love letter to my husband swirling in my mind, but the pressure behind my right eye is so bad, and I must try to rest.

Dan and I were just looking through the gallery of photos (password is "delaney") our friend Christina Adams of Grace Designs Photography took last year on our tenth anniversary celebration at Gervasi. We listened to one of our love theme songs, Andrew Peterson's Dancing in the Minefields. (We are hoping to hear him perform on the "Songs and Stories" tour next Sunday evening in Olmstead Falls with Steven Curtis Chapman and Josh Wilson. God, please let me feel well enough to celebrate something with my Dan.)

We are worse for the wear after this past year, something I don't think we thought was possible, but we are more steady and sure too . . . in a way only THIS life God has given us could make us. Most of all we keep loving because He first loved us and leads the way. We will keep dancing at the foot of the cross because "we are more than conquerors through Him who loved us." (Romans 8:37)

We live in faith, hope and love, but the greatest of these is Calvary Love.

Turn your face

2012-02-15T13:48:00.000-05:00

Source: mysoulsoup.com via Monica on Pinterest

I haven't written here much because I have been so very sick for weeks. Just when I think I have turned a corner or see some light in the distance I fall back again. I spent the night at the emergency room on Monday and the tests and scans didn't reveal why my lymphs are so swollen, especially the ones in my neck and head. My throat is still so very sore and my ears hurt horribly. Any noise, especially the reverberation from the television or talking on the phone makes me cringe and want to cry. The dog barking is like a knife in my right ear. I am well into my second course of antibiotics. No one knows what else to do for me.

I have been unemotional through this last few weeks. I wonder if I've hardened or if I have just developed better coping mechanisms. I no longer wrestle with why God continues to allow so much suffering in our family and particularly in my body. I have seen enough good and pure Grace flow from these past years to understand our story is about so much more than flesh and bone. As the day is wearing on I feel worse again. I want to cry, but I can't.

Dan and I "celebrated" our 11th anniversary on Friday. Besides quickly exchanged cards the day was hard, the weekend was harder, and when he tried to pray for dinner on Monday before my mom took me to the ER he literally couldn't find any words.

I have had a special night away planned for this coming weekend for a long time. We cannot really have a date night at "our home" anymore because my mom and dad watch the girls, and they live here too. I can't tell you how much we miss sending them off to my parent's house and just BEING together in our own space. Now we have to get a hotel if we want to really be alone. You might remember early on in our journey how we committed to taking money once a quarter, four times a year, and having a special date out. Sharing a good meal together, talking for hours because we really want to see and hear one another, and loving in a space with no other demands on us so we can be fully there is like light and water to our marriage. No matter what this helped sustain our relationship and gave us something to look forward to. For many reasons including my downward spiral of pain the resolve to make this happen faded away after our June date last year. In reality our trips to Maryland and Cincinnati for health issues had to take the place of time and resources we might have used for this purpose.

I desperately want to feel well enough to go away with Dan Sunday night. It won't even be 24 hours together, but we need it to keep breathing and living. We have to turn around and drive to Cincinnati Wednesday morning for Danica's long brain and lumbar MRI under sedation in the afternoon. We will see her neurosurgeon on Thursday, and I will see the geneticist on Friday. I cannot even go there in my mind, because I will break under knowing how truly difficult these trips are and how badly I feel right now.

I am weak and tired and broken. It feels so dark here still. God brings me these words this morning,

You, LORD, keep my lamp burning; my God turns my darkness into light. With your help I can advance against a troop; with my God I can scale a wall. As for God, His way is perfect: The LORD’s word is flawless; He shields all who take refuge in Him. For who is God besides the LORD? And who is the Rock except our God? It is God who arms me with strength and keeps my way secure. He makes my feet like the feet of a deer; He causes me to stand on the heights. He trains my hands for battle; my arms can bend a bow of bronze. You make your saving help my shield, and your right hand sustains me; your help has made me great. Psalm 18:28-35

I cannot turn my head because of my fusion. How do I see the Son? I use my waist to turn. The loose bones snap and pop. Yes, a weak spine bears the weight of all He has asked me to carry. Where will I look to find the courage and strength for this hour? " . . . O soul are you weary and troubled? No light in the darkness you see? There's light for a look at the Saviour, and life more abundant and free." I see Him now. It makes me brave enough to hope and wait another day. " . . . His Word shall not fail you - He promised; Believe Him, and all will be well."

Light.
Glory.
Grace.

This way is perfect.
This word is flawless.
I am secure.

Calvary Love . . . in a friend

2012-02-09T10:47:00.000-05:00

Jesus said, "Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these." Matthew 19:14

I've written about her many times before. A little girl named Brooke who God brought into our lives literally days before her first brain decompression for Chiari. Since then her mom has become one of my nearest and dearest friends for many reasons but most of all because we share the same road and the same heart most days. Our daughters share many things too. We have seen them become knit to one another in a mature way children of this age rarely do.

God took the Crown family away for awhile and in the past month brought them back to Canton. I told Danica Brooke had moved home a couple of weeks ago. She asked and asked when she would see her again. Because of our sickness the reunion had been delayed, and her little heart was so ready to spend some time with her friend. Yesterday was finally the day! Brooke's birthday had been the week before, and Danica wanted to have a little celebration for her of our own. We made a colorful paper chain and baked special cupcakes for the occasion. Danica helped me wrap her special gift of fairy paper dolls. We set the table and got everything ready before Danica left for preschool.

When Brooke and her mom showed up at the back door the smiles on the girl's faces were ear to ear. Brooke was carrying her new American Girl doll, Emily. She had finally been able to take her wish trip from the amazing local agency Wishes Can Happen. Her wish had long been to have a REAL American Girl doll. (Remember when she sacrificed her Target doll as a gift to Danica?) They gave her a beautiful trip to Chicago's American Girl Place and all the special treats a girl could imagine. After she had done lots of shopping and picked out her own dolls and plenty of other goodies they went to the bistro to have lunch. In all the excitement and "excess" she was so unfamiliar with she was still thinking of her friend. She asked her mom if maybe they could get Danica a doll too. After they finished eating she went back to the avenue of dolls and picked out BRAVE Emily, one of the same dolls she had chosen for herself. Her reasoning was simple. Because they are both brave girls. Yes, the bravest girls I know. Brooke's heart was brimming over as she gave Danica the big red signature bag with her gift. Danica could scarcely believe it was real. (She has often snuck into Delaney's room when she is at school to play with her sister's special dolls. I always told her she needed to be older to get her own.) The girls took off with their Emilys to play in Danica's room for the afternoon. Kindred little hearts and so much love . . . love like Calvary Love . . . thinking of one another before themselves . . . sharing in suffering and in Grace and living in hope. I saw the Kingdom of God as they ran down the hallway. Melinda and I chimed in unison, "Don't run!!! Walk!!!." Yes, we are on the same road.

Melinda and Brooke are at Cleveland Clinic today and as I type they are waiting to take her back for anesthesia. I am there in every way except physically. Two weeks from now we will be in Cincinnati doing the same with our sweet girl. The trips, the waiting, the telling and retelling of our story, the constant fight to give them the best chance, the bills that never end, the management of symptoms and care and wondering when the other shoe will drop is soul wrenching and at times all consuming. Without God how would we do this? Without Calvary Love where would we be? And so I sit here at the foot of the cross today praying for them and thanking God for the gift of them. Won't you please pray too. They have many needs but this moment it is strength and grace for the struggle, the IV, the waiting, the recovery, the long drive home and mostly what the pictures will show in Brooke's little brain and spinal cord.

"If I refuse to allow one who is dear to me to suffer for the sake of Christ, if I do not see such suffering as the greatest honour that can be offered to any follower of the Crucified, then I know nothing of Calvary Love."

Amy Carmichael from If, What do I know of Calvary Love?

Dawn of Grace . . . catching up on Calvary Love

2012-02-07T10:15:00.000-05:00

The past few days our family was pretty far from Calvary love. It felt hypocritical to write about sitting at the foot of the cross and trying to be like Jesus when we were all so sick and wounded and looking less and less like the Image of God and more and more like sinners too far gone for saving.

Bare feet stepping on glass
We break along life’s paths
Our fear and loss, we bring it all to you
Soul-breather, making all things new
You’re making all things new

We come in pieces
We come in fragments
We come discolored
To the foot of the cross
Our Maker sees us
All that we have been
Bonds us together
The Image of God

Clay vessels molded for His own
Shall we question him who holds
And shapes us, for His perfect use
Soul-breather, making all things new
You’re making all things new

We come in pieces
We come in fragments
We come discolored
To the foot of the cross
Our Maker sees us
All that we have been
Bonds us together
The Image of God

Soil breaking for the seed
Seed breaking for the life
His life broken for the soul
We are remade whole, remade whole

Finally, this morning was like the beginning to a NORMAL day. Delaney woke to her alarm on her own and prepared for school. Her beautiful blue eyes look up at me as she left. Her mommy was actually there to see her off for her day. I kissed her sweet golden hair. "I love you Laney. Make it a great day!" Danica was finally well enough to go to preschool. Her joy and excitement while getting dressed and eating breakfast all the while tweeting her morning song made my own heart find a melody too. I watched Dan and her walk out the door holding hands. Her little "Danica" backback on her strong shoulders and her sweet white neck sticking out of her puffy pink heart coat. "I love you baby bird. Be careful. (I can't not say it.) Remember, You is kind. You is smart. You is important." Chirp. Smile. Every moment that even glimmers with healing instead of hurt is an achingly beautiful one in our world.

I close the door and turn to my quiet morning alone. I don't feel the need to rush around and make beds or organize something. I don't run to my "to do" list on my desk and begin making phone calls. I don't take my coffee and sit to watch the TODAY show. I only want one thing. Give me Jesus. I need to see His face. I need to know there is nothing more I can do to make me safer, more loved, more forgiven than I am right now. He finished it all. He covered my failures of the past days completely. He remembers them no more. Rest here. The sun is rising. The warmth of His perfect love is thawing the thick frost on my heart. It's another Dawn of Grace.

Oh, the law I cannot keep
Brings me breathless to my knees
And there I learn to let the gospel be
The sum of what I know
Like rays of rising hope

Oh, dawn of grace upon my soul
The sweetest day my heart has known
And once I looked on Jesus’ face
It was the dawn of grace

All my striving is in vain
All my pride a losing game
And all of my best efforts, simply chains
My Savior steals me from the night
Leads me into love and light

Oh, dawn of grace upon my soul
The sweetest day my heart has known
And once I looked on Jesus’ face
It was the dawn of grace

Every day His mercies are new. It's never less amazing is it? To look full into His face and know for sure you are redeemed.

Quiet prayer.

God, make me look more like You today. Take the broken pieces and make me more whole. Do something new in my heart and life today. Help me live Calvary love.

(If you haven't dowloaded Christa Wells and Nicole Witt's album Image of God you are missing a blessing. Five heart songs. I love them all, but I think the Lord's Prayer is my favorite.)

Calvary Love . . . Day 3

2012-02-03T19:40:00.001-05:00

If I ask to be delivered from trial rather than for deliverance out of it, to the praise of His glory; if I forget that the way of the Cross leads to the Cross and not to a bank of flowers; if I regulate my life on these lines, or even unconsciously my thinking, so that I am surprised when the way is rough and think it strange, "Think it not strange, Count it all joy," then I know nothing of Calvary love.

-Amy Carmichael from If, What do I know of Calvary Love?

Calvary Love . . . Day 2

2012-02-02T17:09:00.004-05:00

If I cannot catch "the sound of noise of rain"* long before the rain falls, and, going to some hilltop of the spirit, as near to my God as I can, have not faith to wait there with my face between my knees, though six times or sixty times I am told "there is nothing," till at last "there arises a little coud out of the sea," then I know nothing of Calvary love.

-Amy Carmichael from If, What do I know of Calvary Love?

*I Kings 18:41

Calvary Love . . . A month of "If"

2012-02-01T22:04:00.001-05:00

A week ago tonight I was still at the lake house. I had the blessing of entertaining angels. In May, 2010, a girl across the world reached out to our family. She became one of the most faithful to love and pray for us on this journey. We became friends in a way that I never thought possible without meeting face to face. She and her mum travelled here from Australia to get her settled so she could begin her call to seminary. We shared a meal together. My dad brought Danica over to give hugs because Dan was working and Delaney was sick. After they left we moved to the living room and sat across from one another. The fellowship was sweet. I found myself bearing my heart to them with an ease I rarely feel because of my pride. We wept. They prayed with me. They asked things of God for me that I have never really been brave enough to ask for myself. The time slipped away, and it was very late when we headed to our beds. I loved having a place for them to stay. My particular gift of overnight hospitality has been buried because of circumstances, and it meant so much to be able to offer them such a pleasant place to sleep even though it wasn't my own home. In the morning dear Bethany came down and gave me a gift. It was a little blue hardback book. I gasped when I saw the two gold letters imprinted on the binding. "IF"

When I was a little girl I found my mother's copy of this book by Amy Carmichael. I didn't even know I loved poetry yet. I didn't know about Calvary love. I was drawn to the simple paragraphs and the pressing of the heart. I was drawn to the white space left on each page as if to say, "STOP HERE. YOU CAN ONLY ABSORB THIS TODAY. MEDITATE. PRAY. LIVE THIS BEFORE YOU MOVE ON."

Bethany reminded me how powerful words are, and how my words here on the screen have changed her. She mentioned my honesty and my return to the cross over and over again. It was God once again speaking to me about how this is not just about us. He is working in ways we may never know until eternity. He is asking me to keep telling the truth  and pointing to Him. He is asking me to suffer awhile longer because He suffered for me.

A week later, and I wonder how I could get so lost in so little time. I moved home and everyone was in stages of sickness. My parents were weary to the core. Dan was completely spent. I began to do much more than I am able, because it has to be done. My presence made everyone seem to fall back on the Monica that will always push through any kind of pain. My recovery was over. I went from full on rest and healing to 24/7 wife and mother. The pure adrenaline kept me going for the past seven days. Tonight I am finished and afraid.

I failed at Calvary love tonight. After sleepless nights and a trip to the pediatrician yesterday for our very sick Danica followed by literally wrestling her for every antibiotic dose my own body has begun to shut down. (The muscles in my neck feel hard and knotty and scream in pain. My blood pressure drops, and I feel like fainting.) The new addition of a puppy has caused me to bend over many times a day. Keeping Danica drinking and wiping her nose in addition to cleaning up puppy pee and keeping Twixy from choking on Danica's little toys she somehow finds and from barking because my grandma is sick upstairs . . . it is too much. I can't just lie down when my body says it it done. I helped Danica make a special card for Dan. She wanted to wrap up a stuffed animal. I couldn't find tape. I looked high and low and my ever sure supply of tape is misplaced or gone. I found some curly ribbon and showed her how to decorate the box with stickers instead of wrapping. (My neck is in spasms.) I put my collar back on. I made enchiladas and corn cake to keep a promise to Delaney. I stood in the kitchen and as my back swayed in my legs felt like jelly. My tethered cord is so glaring now.  Delaney got home, and her coat needed washed. I asked her about homework. She has a math test and a verse due tomorrow. I heard her but was really thinking of how to say out loud to someone I have to rest. (Please God, let someone offer to help me.) My mom came in, and I told her how sick grandma is. She told me about the very sad death of a dear administrator in our school community. She needed to go get Gatorade and medicine for grandma. I don't think she saw me. I don't think she could. I cleaned up the dishes from feeding the girls and Anna Mae. I made Dan a plate for when he got home and Delaney a container for her lunch tomorrow. My dad came in. He looked at me and my wide eyes. He asked me what was wrong. I told him I was in so much pain. I don't think he heard me. I don't think he could. Dear people in our church lost their grandson in a horrific accident in Virginia. I have barely been able breathe thinking of their loss. A Chiari sister is fighting for her life in a coma after surgery to try to relieve intracranial pressure. I had this high pressure the day after my surgery. I know how grateful I should be to even be here. I know the world is constanly turning, but I feel frozen in this place. I went downstairs and told the girls I had to rest. Just ten minutes. (I had to look for my Vicodin. I quit taking pain medicines as soon as I came home as if I drew a line in the sand. I had to cross back over.)

Dan came home, and I felt like I couldn't move. He saw me lying in bed. I saw it in his face. It's his birthday. I felt a crushing guilt. A plate of food was on the table and a cherry pie my mom picked up for him yesterday. I heard the girls giving him the cards they made. I couldn't move. He ate his pie alone. The entire family came in to get in bed with me. Dan had an old tattered home plans magazine. (Every move of the bed hurt my neck. I gritted my teeth.)  Dan and Delaney began talking about the house they want to build.  They were discussing the size of her bedroom and what color she would paint it. I wanted to scream. Then I said it.  I spoke cruel words that cut deep into one of the only places Dan still holds a dream.  I told them to quit talking about a house we would never have and be quiet. I asked them if they could see me and my pain. Doesn't anyone see I can't do this? They scurried away. Hot tears ran down my fevered face. The lies begin to fill my head. I am a failure at love. I will never be enough. I can never do enough. I have been broken for too long. They were better off when I was gone.

I said I could not tuck Danica in tonight, but she came in later in her tattered princess peach dress so ready to go to bed. I crawled out of my self pity and remorse and slipped in beside her unconditional love. It hurts to lay sideways on her twin bed. My neck is unsupported on normal pillows. I rolled over with my back to her to try to get more comfortable. Her soft hand rubbed my back and she began to trace the scar on my neck with her little finger. I began to cry again. She sees me. She understands. Her healing took over a year. She knows it is way too soon for me to understand how much better things will get. The kingdom of God is made up of tender hearts like hers.

Just like that I am back at the foot of the cross where Grace and suffering meet. His Grace is greater.

If I am soft to myself and slide comfortably into self-pity and self-sympathy; If I do not by the grace of God practice fortitude, then I know nothing of Calvary love.

Run for Monica

2012-02-01T11:28:00.003-05:00

A note from my friend, Kristin, and her friend, Mellany.

Some of you know my dear friend and previous coworker, Monica Snyder. She and her daughter, Danica, both have a Chiari malformation in their brains. What this means in simple terms is they have a gap where most people's skulls are closed so some of their brain sticks out into their spinal columns. Danica had her second surgery to fix this in October 2010 and Monica had the same surgery in November 2011. They both needed fusion of the skull base to their vertebrae as well to make them stable and protect their brainstems and spinal cords. Monica needs a further surgery, called a tethered cord surgery, which she will be having on March 28th. Most likely, Danica will be having the same surgery this summer. They both also suffer from a genetic connective tissue disorder called Ehlers Danlos Syndrome.

Obviously, this family has had crushing medical bills between all of the surgeries, recoveries, travel to specialists and inability to work. We are doing a fundraiser to raise money for Monica’s surgery and continuing medical bills. Starting February 1, and over the next 7 weeks, we are going to log our running miles as we train to run the Rock N Roll Half Marathon in Washington, DC on 3/17/12. We are looking for people to sponsor us for the mileage we run. Each of us is averaging 15-20 miles a week. You can either sponsor one or both of us; per mile or make a onetime donation. Donations can be make via the DONATE button on this blog or you can write a check to Monica Snyder. All checks will need to be submitted by 3/21/12 so that we can get the money to her before her next surgery scheduled for 3/28/12 in Lanham, Maryland. 100% of all donations will go straight to Monica’s medical payments. Thank you for your love and support and especially your prayers for this family. God bless.

Morning Prayer

2012-01-31T08:25:00.002-05:00

The past two nights I have been momma to a sick girl, and I am sick myself. There has been no ramping up period since I returned home. There has been very little rest and more pain and discouragement. In the night Danica woke with a 103 degree temperature. She was coughing and gagging and would not take oral fever reducing meds. After I was able to give her a suppository she finally settled in. I kept watch over her and prayed. This morning I stumble through the motions of living, and I don't know how to pray. It's dark, and my heart is crying out wordless yearnings to my Father, but it doesn't seem like enough.

I pull one of my books of prayers. I shake as I find the one I know I need.

"My soul waits for the Lord
more than those
who watch for the morning,
more than those
who watch for the morning." Psalm 130:6

Lord, You have always given
bread for the coming day;
and though I am poor,
today I believe.

Lord, You have always given
strength for the coming day;
and though I am weak,
today I believe.

Lord, You have always given
peace for the coming day;
and though of anxious heart,
today I believe.

Lord, You have always kept
me safe in trials;
and now, tried as I am,
today I believe.

Lord, You have always marked
the road for the coming day;
and though it may be hidden,
today I believe.

Lord, You have always lightened
this darkness of mine;
and though the night is here,
today I believe.

Lord, You have always spoken
when time was ripe;
and though you be silent now,
today I believe.

"And I--in righteousness I will see your face; when I awake, I will be satisfied with seeing your likeness." Psalm 17:15

Home

2012-01-29T11:05:00.001-05:00

“And the world cannot be discovered by a journey of miles, no matter how long, but only by a spiritual journey, a journey of one inch, very arduous and humbling and joyful, by which we arrive at the ground at our own feet, and learn to be at HOME.”  Wendell Berry

It's Sunday morning which should have a "feel" to it, but for our family does not because any given week could be different. One of the things I have longed and prayed for is some return to routine and ritual for us. I imagine waking to coffee and a hymn playlist while we make cinnamon rolls and then rushing around to get ready for church and out the door. I cannot remember the last time we were all able to go together.

Today we are in varying stages of recovering from sickness. Delaney had a fever and cold last week and now Dan and Danica are finally on the tail end of the same thing but still very snotty. I moved home Thursday afternoon and promptly began to feel very feverish. Yesterday I spent most of the day in the bathroom and completely wiped out. I was discouraged. I felt afraid nothing had changed and the last eleven weeks were wasted time.

This morning I woke early and turned to find my husband beside me. I curled up with our arms and legs intertwined, and gradually our breathing became the same peaceful rhythm. This man who has denied himself completely over the last months to care for me and our children became the servant leader I always prayed for. There was no one hoping harder for this surgery to make a difference in my health and mostly in my heart. He was the only one who fully understood how close I felt to the end of my life and how serious things had become. He never stopped believing in the Monica Kaye he had fallen in love with.

Danica came in rubbing her sleepy eyes and wanting to snuggle a little. Dan got her settled and went into her room to catch more sleep.  Her sweet soft hand reached over to hold mine. She has grown from a tiny baby bird who was always under my wing into a strong flyer. She is saying and doing the funniest things that come from people and places I did not experience with her. This hurts in the best way. For so long I prayed this miracle girl would be able to flit and float through life and use her beautiful mind to learn and her brave heart to help others. I wanted the world to know her as I do. All these dreams are coming true.

Delaney snuck in and made a comfy pallet of blankets and pillows on the floor beside me. She began to giggle and squeal.  Her new puppy, Twixy, the love of her life, the reward she waited and waited for as she suffered through crisis after crisis in our family, was spreading kisses all over her face and ears. I have never seen Delaney happier. I have never seen her more respectful and responsible. I am so proud of her special brand of courage and learned compassion, something that does not come easily when you are nine and wanting your life to be picture perfect and revolving around you.

I got up and began to take care of my girls. I felt good. Yes, my neck muscles are stiff and tire easily. My head does go numb when I do too much. The pain in my lower back and legs is much more evident since my surgery. Still, I am like a new person. Truly, it is so life changing for me I scarcely know how to feel or act. This morning I was pleasant and loving and patient without even trying. As someone who has suffered from chronic pain for so many years I didn't even realize the hard edge I had begun to wear on my worst days and the callouses the people I love so dearly needed to form to protect themselves from me.

Dan came out of Danica's bedroom from sleeping in and said, "This is too weird. I don't know what to do with this." We hugged and laughed. I had washed the dishes. The girls were playing nicely, and I was on my second cup of coffee. Maybe, just maybe this arduous, humbling journey brought us all back here, to the sacred ground right under our own feet.

Home. Quite literally the one thing I have treasured and longed for since I was a young child. I somehow have always known in my heart it is made up of more than a roof and walls and things. If built the right way it becomes a sanctuary for the sacred. It is built by wisdom. It is built by understanding.

I am home. I run to my bookshelf and pull Somewhere More Holy by Tony Woodlief. I find the dogeared page with the quote I have have carried in my mind but can't quite type verbatim.

" . . . This is the story of how we reclaim the things that are lost. It's also the story of how a home can become sacred, and how the process can sanctify us as well. I can tell you these things because I have been in dark places--which is the only way any of us learns to love the light . . . Home is more than a place we eat and sleep; it is where we learn grace, where we glimpse heaven. It is where we find or lose God, or perhaps where He finds us if we will only be still long enough to listen for Him."

Maybe, just maybe, this basement is the truest home I have known.

What you must do

2012-01-24T20:16:00.001-05:00

“You mustn’t wish for another life. You mustn’t want to be somebody else. What you must do is this:
“Rejoice evermore.
Pray without ceasing.
In everything give thanks.”
I am not all the way capable of so much, but those are the right instructions.” Wendell Berry

I am still very weary from my Maryland trip so I will keep this short and unemotional. The report on my fusion and decompression is good. I am healing. My pressure issues will need to be controlled long term (Dr. Henderson's words were "the rest of your life") with a low dose steroid, a corticosteroid and aspirin. My remaining symptoms and the radiologic findings of my thoracic and lumbar spine point to a number of issues that need to be resolved surgically. These include dural ectasia and increased cerebrospinal fluid at the thoracic spine. At the thoracolumbar junction there is 30 degrees kyphosis on forward flexion which is very abnormal. I have a syrinx in my lower thoracic spinal cord, scoliosis, and a 6mm Tarlov cyst in my lumbar spine. For all of you who are not well versed in neurosurgery and orthopedic surgery these things in addition to my neurogenic bladder point loud and clear to the need for tethered cord surgery sooner than later.

I am scheduled for surgery on March 28th. It will require 3 days of hospitalization flat on my back and then 4 more days in Maryland to watch for complications and follow up with Dr. Henderson. Like so many times before I sit here typing the reality of our life not knowing how God will provide to meet these new challenges. The difference is I have come to expect great things. I really do.

Until He makes the provision clear I will follow the right instructions. REJOICE. PRAY. GIVE THANKS. REJOICE. PRAY. GIVE THANKS. REJOICE. PRAY. GIVE THANKS.

Our hope remains.

awaiting miracles . . .

2012-01-18T11:38:00.002-05:00

Do you remember a post long ago about how God is saying "Yes!" in a thousand ways even when we can't hear Him yet? It was the first time I had ever heard Christa Wells sing. It was the song that I listened to a thousand times after that day as I faced what I considered to be closed doors, disasterous delays and even outright "No" from God.

I sit here this morning looking out at the perfect powdered sugar coating of snow on the ground and soft sunlight reflecting off the lake. The same lake that yesterday was splashing over the shore as the winds and rains furiously moved the usually very still water into choppy waves. It reminds me how quickly the storms can come and how quickly He calms them and allows sunshine to visit again. It reminds me of Grace.

I wonder if I had been shown a year ago the path God was asking us to walk if I would have obeyed. I see only in part even now what He has been doing in our hearts and lives and the hearts and lives of people around us. One thing I know for sure. We have been active participants in real miracles.

Miracle. The word holds so much power. I used to hesitate to use it much because it's very definition implies the occurence is rare, and it should always point to Divine intervention. It's often thrown about in careless ways that dull it's shiny meaning. Still, I have read over and over the accounts in the Bible, and I know God is doing these same kinds of amazing things today. The focus of Christ's miracles was always faith and always the heart, even if bodies were healed, water was turned into wine, waves were made to cease, He was always pointing to spirit and soul issues. He was always showing His power to bring God the glory.

I read this yesterday. Words from Christa Wells reminding me extraordinary God intervention is happening all around us every day if only our eyes would be opened and hearts me made to see.

When something life-giving falls from us who are riddled with want…a word of kindness or sympathy…an inconvenient act of generosity…isn’t it a miracle?

If something touched by our trembling fingers grows gold and winged, soars … finds entrance to another human soul…isn’t it a miracle?

When a child looks you in your tired eyes and reaches a small hand, adoring…
Isn’t it…miraculous?

When a friend hears the pained confession,
and stays…

When we find ourselves swept off our seats in laughter, even though…
Is it not the most welcome kind of miracle?

When work comes along, finally…
When the work is completed…

When an improbable friendship is born…

When we find a fragile opening to forgiveness…

When something lost is found…
something broken healed…
something caged released…

When one creature carries and nurtures another in the caverns of its own body…
When the crocus smiles from snowy earth
and strangers share a meal…

When brothers and sisters pave new ways…

When suffering sweeps over and still we see light and truth and love and hope…

When the artist creates…
When the creator loves…
When the lover saves…
And the savior lives!

may we be moved to see the marvels of things in motion here…
the miraculous, gorgeous possibilities which rise from the ashes of ”reality”
providing what is needed for Life.

I can't breathe as I read the last lines over and over. " . . . the miraculous, gorgeous POSSIBILITIES which rise from the ashes of "reality" providing what is needed for Life."

I woke up this morning. He lifted my head as I ran to His word and prayer. He fed me. He clothed me. I am heading home to spend the evening with my girls. I feel absolutely no pain in this moment. I am surrendered. I am hopeful. I am hearing, "Yes!"

I can't wait to see what He will do next!

A related listen: Sara Groves – Miracle

Loneliness and healing

2012-01-16T14:48:00.001-05:00

"Healing is impossible in loneliness; it is the opposite of loneliness. Conviviality is healing. To be healed we must come with all the other creatures to the feast of Creation." Wendell Berry

Nine weeks ago this morning I headed to Doctor's Community Hospital in Lanham, MD for brain decompression and fusion. November 21st, 2011 will forever be a turning point in my life and the life of those who know and love me. In many ways I will move forward celebrating that day as a "birthday" of sorts. A chance to learn to live again is an amazing gift.

This morning I was reading in Luke and drawn again to the passage in chapter eight about the woman who had a flow of blood for twelve years. She spent every penny she had on physicians and could not be healed. While in a throng of people she reached out and touched the hem of Jesus robe, and she immediately felt the flow of blood stop. Can you imagine? Jesus stopped and asked the crowd who had touched Him. This woman came forward and fell trembling before Jesus and the crowd and TOLD HER STORY. Jesus said this to her, "Daughter, be of good cheer, your faith has made you well. Go in peace." Several chapters later Luke tell us about a woman who had a "spirit of infirmity" eighteen years and was bent over and could in no way raise herself up. When Jesus saw her He said, "Woman, you are loosed from your infirmity." He laid His hands on her and immediately she was made straight, and she glorified God. Here's the thing. Healing is rarely this sudden or miraculous. This makes me wonder what piece I am missing to finally "go in peace."

My story is a combination of these two women. If you trace my health history over the past two decades or so I carried the two infirmities mentioned above continually. I was bleeding heavily all the time. I was in the emergency room too many times to count. I missed out on many social functions and just normal life because I simply could not control the flow of blood and all the pain and weakness that came with it. When I was sixteen I went on a trip with my boyfriend's family to Leesburg, Virginia for a party at his aunt and uncle's home. I remember borrowing my sister's new jeans to wear. I was sitting on an off-white setee' when I felt it surge. I jumped up, but it was already soaked through my pants. That night I slept in a beautiful guest room with pristine sheets. I woke in the morning with blood stains on them. I was so embarassed and ashamed. I missed classes at college and days at work. There was a seven to ten day stretch every single month I could not be part of life. The first Christmas Dan and I spent together we had to miss an important family party, because I could not stand up from the pain or control my flow. Dan tells the stories too. Even our flight back from Aruba on our honeymoon ended with landing in Atlanta and being rushed from the tarmac to the hospital because of a cyst that burst from the pressure of flying. Blood was everywhere. So many Sundays I would miss church because I could not sit through a service without blood leaking. The last time Dan found me on our bathroom floor blacked out in a pool of blood was the final straw for us both. My hysterectomy in August, 2010 ended the bleeding but not the blinding pain from the endometriosis left on my bowels. Finally, a year ago, a special surgeon at Cleveland Clinic went in and hand picked the insidious disease off my remaining organs. It was not quite as instantaneous as touching Christ's robe, but it was a huge step towards healing in this area of my body. I remain on medication to keep the endometriosis from growing back. I will never take a day of this healing for granted. It controlled every aspect of my life since I was a teenager and for awhile at least God has removed this particular thorn.

I had never really noticed the woman's story told later in Luke until this morning. The passage is focused on Christ's decision to heal on the Sabbath, and I always read it with that emphasis. I love how the very words used here describe perfectly my Chiari and Ehlers Danlos Syndrome. I was in every way "bent over" and could not make myself straight. Since childhood my mother had asked me to put my shoulders back, quit humping over and hold my head up. I really couldn't. My sisters would joke I looked so flat chested because I was "concave." I always laughed along with them, but their words stung. I had a huge bone sticking out of the back of my neck and a hump on my left shoulder. I always walked with my right arm across my body pushing down on that hump trying to keep myself aligned. I truly was always in some kind of pain. Last night Dan came to spend the night, and I had my collar off. He commented on how he is not used to the new regal look I have. I carry my shoulders square, my head lifted up and facing forward. My countenance is no longer overwhelmed with agony. He seemed almost bashful with this woman who might in fact be the same Monica he has loved all these years but somehow very different too.

A week from today I will be in Maryland again for my ten week follow-up appointment. I plan to make a huge step by rejoining my family and the "real world" later that week. As it approaches I feel excitement and anxiety. I do not remember how to live life the old way. I see almost every single thing in a strange light. I am afraid of returning to the darkness and the loneliness of the living situation God has graciously given us. This recovery place reminded me how desperately people need other people to really be well. Since we moved to my parent's basement people in my life simply stopped visiting. I quit reaching out because of shame and embarrassment, and they felt awkward, I know. It's all uncomfortable. Do they ring the doorbell at the front and hope I hear it and walk up the steep stairs and fetch them to come down to the basement? Do they come to the back door by walking through the side yard? I don't have a kitchen so the food and friends part of my life has completely ended as well. Here at the lake house I have had so many people come visit and not just pop by but invest valuable time in being with me. I even entertained my entire book club last week. They brought the food and did the clean up, but it felt so good to be able to have them here. I need this fellowship to continue to keep healing. I worry about my parents too. They have stopped entertaining guests all together because we are there. The home they built for hospitality has rarely been used for that purpose. They don't even have room for their other children and grandchildren to visit. This makes the guilt I feel worse.

I cried last night as Dan and I walked through things we are both struggling with as we anticipate this new chapter. For some reason our living situation is huge hangup for both of us. He told me about a conversation with the girls and my mom at the Sunday dinner table about how lucky we are to live where we do. Yes, we can always visit the mud huts or the high rise tenaments. There are many who are truly homeless. We ARE grateful. We live in that gratitude daily as we look around and see where we might have ended up if not for my parent's willingness for us to land there. With all that said, the complicated emotions surrounding my relationship with my parents and Dan's need to really be the man of the house and our need to parent and love our children and be married apart from two other family units are REAL needs. We have been lonely for a long time. Even lonely for one another because of this strange world where someone else is always there. Sometimes I know people think because we live in a compound there is no way we need any more bodies or hearts to join in. This is not true. A family with a sick and homebound restricted child and a very sick mom, eventually loses the invitations to summer barbeques and after school play dates and impromptu sleepovers. People feel uncomfortable talking about their next planned vacation, big home improvement project, new shoes or even silly little gossip around a family that is literally just trying to survive the day. It causes a strange unspoken rift. Still, I am finding it is the people we need to really come full circle in all this. Tim Keller wrote in his book King's Cross, "If this world was made by a triune God, relationships of love are what life is really all about." The Father, Son and Holy Spirit are a continual reminder we are not soul freelancers. We need corporate worship. We need to physically be with the Body. We need to understand our brokeness is shared in some way by the whole. It is here we will find the rest of our healing.

Tears ran down my face last night as I shared with my husband how frozen I feel. I need to be with my children and Dan desperately, but I am physically sick at the thought of moving home. This is brutal honesty. Dan began to preach back to me truths I had so long encouraged him with. He reminded me as long as we are together we are home. He reminded me how powerful it is to change our thinking about a situation to really make it okay. He reminded me how hard he has to work to surrender his selfish desires to be a husband and father under these circumstances. He validated every single hope I have for recovery and restoration and every fear about being so ill equipped to move forward and be brave enough to start a journey away from where we have been asked to dwell for so very long.

Friends, I need you to remind me too. I need to relearn life from you. I need to know how to be well. I need relationship and fellowship and communion. I promise you I will be the strange lady who bursts into tears at the most inopportune times. I will apologize for my basement home if you come and visit. I will not be good at small talk for awhile. You will wonder at my foodie cookbooks and ask where my stove is. You will be surprised how quickly I want to talk about heart matters and soul issues. You will need to remind me to not be so serious all the time. You will ask me to quit talking about the minutiae of neurosurgery. You will need to share your joys with me, because I DO care about your beach trip or your new countertop, I really do. I want to hear about the conversation you had with you kids in the car or your latest and greatest crockpot recipe find. It will take some time and some effort, but I need you. We need you.

Thank you for praying for me this week as I seek out the last lessons and blessings God has for me here. Please pray I will continue to heal and have patience with the process. Please pray for our family. We need supernatural strength and grace to keep the faith and hold onto hope as we explore what life will be for us in the coming months. One thing I know for sure. We need community. This same girl who has always in some way loved being alone has been drawn out into this scary place of sharing in the blogosphere. It has connected my family and I to people near and far we otherwise would never have known. It brought much of the prayer and support we couldn't have made it this far without. But the danger in these relationships is easy to see. We hide behind screens and projections of ourselves instead of meeting in flesh. This is where the work and the reward of relationships are really cultivated. We must be face to face.

A woman called me last week who I know through Delaney's school but don't know in a heart way. She cried as she thanked me for sharing our life and asked me to please keep writing. Her daughter has been through many surgeries and still faces many in her future, and she shared how my honesty and faith help her in her walk. She didn't know that I was very near a decision to end my blogging. I have believed for awhile now God is calling me to write this story in the much larger context of my entire life and to do that I have wondered if I need to still my voice here for a time. I have been praying for direction. Later I read another chapter in the book I mentioned in my last post from Adele Calhoun about spiritual disciplines. She says this about the role of fellowship and community in our faith, "My life has been shaped by men and women who loved me and handed me something of God in their very human lives. Their spiritual practices were woven into the fabric of their lives on the loom of relationships--both with God and with me. They had no halos. They told me the truth about the good, the bad and the ugly while passing on the lore of the spiritual disciplines they had traversed. I believe this is the way spiritual disciplines are to be learned. We are to learn them in relationships."

This was my answer. Everything God has given me, shown me, blessed me with needs the breath of life that can only come from opening my heart and being with people again. Only then will this story take its' final shape and be ready to be told beginning to end. I need to come together with others to make this healing viable. I need to taste the fruit of taking risks to let people into my life through my door, yes the one behind the house, and let them remind me how to do this thing called community, fellowship, friendship and love. I will keep trying to let you all watch as I fumble through this uncharted water. It won't be fancy, but it will be real and keep pointing to the life sustaining relationship I have been given by Grace with Jesus Christ. Real bones and real flesh given in sacrifice for me encourage me to live and love more like He did in the messy relationships that sometimes hurt and even end in betrayal. I need to finally get comfortable wearing the sign that calls me out as the poor and the brokenhearted. I need to surrender in the most uncomfortable places where I believe He does His greatest healing. I hear His voice calling me from the basement, my home, my people, my life, "Be of good cheer. Go in peace."

Engraved on His hands

2012-01-13T22:10:00.000-05:00

But Zion said, “The LORD has forsaken me, the Lord has forgotten me.” Can a mother forget the baby at her breast and have no compassion on the child she has borne? Though she may forget, I will not forget you! See, I have engraved you on the palms of my hands; your walls are ever before me.   Isaiah 49:14-16

The many days away from my family are almost at an end. I have felt a longing for my husband and children in the past week that aches in the deepest places of the heart. This is how I know it is almost time to go home. I began my time here sleeping a lot and in great amounts of pain. My mind was dulled by medications and utter exhaustion. Those first weeks finally flowed into carving out my own routine and rituals. I found great comfort in quiet mornings on the couch listening to hymns and praying with my face turned towards the sun.

I started out praying for all the "wrong" things. I didn't realize I was so thirsty and hungry for living water and the bread of life.   As I listened to many messages, particularly one saved on the playlist of the family who owns this home, I was convicted to change up my prayer life. I was drawn back to liturgy and Christ's example. "This is how you ought to pray . . . " I have begun to pray the Lord's Prayer in earnest. I have literally stood on the shore of this lake and watched God building a bridge to take me from the years of pain and suffering to a new thing. I needed these months of rest and solitude to make me whole again. I needed the quiet to hear His voice calling my name. I needed the space to draw close to Him as He reminded me of my identity. I am a child of God.

A year ago I made a promise I would make a discipline out of solitude and spiritual retreat. Remember my night away? Christ modeled this better than anyone. He would often separate Himself from the disciples and the crowds and spend time with God. He was tempted there as He wrestled with the perfect will of His Father leading straight to the cross. I have been here alone long enough to have encountered Satan and His same old lies about how God doesn't love me, and I am never really going to rescued from all this loss. Adele Calhoun writes this in her Spiritual Disciplines Handbook,

"Solitude is a discipline that gets behind those feelings to who we are when we feel invisible and unrecognized. Who are we when productivity and recognition fall away and God is the only one watching us? Some of us simply seem to lose our sense of self when there is no one to mirror back who we are. Without the oxygen of doing and the mirror of approval, our feelings of being real and important evaporate. Hollow places open up in our heart, and our soul feels empty and bare. We can feel agitated, scattered, and distracted. These disconcerting feelings do two things for us. They reveal how much of our identity is embedded in a false sense of self. And they show us how easy it is to avoid solitude because we dislike being unproductive and unapplauded.

But we need solitude if we intend to unmask the false self and its important-looking image. Alone, without distractions, we put ourselves in a place where God can reveal things to us that we might not notice in the normal preoccupations of life. Solitude opens a space where we can bring our empty and compulsive selves to God. And no matter how well we ‘do’ silence, God is there to accept, receive, and love us. In solitude we see how little we embrace our true identity in Christ. And we find the truth of who we are in Christ. We are the beloved, and God is pleased with us. This identity is given; it is not earned. Many other voices pull at us, seeking to own and name us, but in solitude we learn what it is to distinguish between the voice of God and the voices of the world.”

My identity was slowly stripped away even before my surgery. I couldn't work in gainful employment. I couldn't care for my children without help. I couldn't be a true helpmate to my husband. I couldn't participate in corporate worship. I couldn't be a good sister or daughter or friend. When I woke up from surgery without the vice grip on the back of my neck one of my first thoughts was, "Who am I going to be if God chooses to remove this thorn in the flesh for good?" The answer is simple. I am a child of God. This identity never changed because of my ability to perform any duties. I am His beloved. There is no guilt here. There is no shame. I don't have to produce anything or be recognized by anyone else. My name is written on His hands!

The verses above are my dad's "go to" verses when he visits the sick and people headed into surgery. I only know this because too many times he has prayed with us before such an event. Dan and I have joked he needs to find some "new material" for repeat customers like us who seem to find someone in our family on a stretcher in a hospital several times a year.  The truth is I find great comfort in these words. God paints a picture we can all understand and relate to.  Tonight I kissed my fingers and touched the picture of my girls and I. Beside it is the sweetest picture my Danica Jean drew of her and I a few weeks ago. She was learning how to make hearts. I was thinking about how impossible it would be for me to ever forget my children. I breathe them no matter what else I am doing. This is how God feels about me but perfectly. I ran to get a Sharpie and wrote my name on my hand. No matter what I do it's there. He never forgets me. Not just my name but my likeness. I am never off His mind or away from His sight or out of His care.

I am in pain. The back of my neck and head hurt where my nerves were clipped, and I am constantly aware of the holes made in the top of my head. I am lonely. The reality of my recovery is not meeting my expectations, and this discourages me. I slip back into praying old prayers for the wrong things until I catch a glimpse of my hand. This is what I pray instead:

Our father, who art in Heaven,
Hallowed be thy name;
Thy kingdom come,
Thy will be done.
On earth, as it is in heaven.
Give us this day our daily bread;
And forgive us our debts
As we have forgiven our debtors;
And lead us not into temptation,
But deliver us from evil.
For thine is the kingdom,
And the power,
And the glory,
Forever.
Amen.

I trace the scars in the hands of my Savior and see my name imbeded there. Kingdom. Power. Glory. Forever.

I rest in His perfect will tonight.

Drain it

2012-01-10T16:32:00.001-05:00

"I do not believe one can settle how much we ought to give [to others and to charity]. I am afraid the only safe rule is to give more than we can spare. In other words, if our expenditures on comforts, luxuries, amusements, etc., is up to the standard common among those with the same income as our own, we are probably giving away too little. If our charities do not at all pinch or hamper us, I should say they are too small. There ought to be things we should like to do and cannot do because our charities expenditure excludes them." C.S. Lewis

It's a recurring theme over the past few years and telling the specific stories never gets any easier, because no matter how many times I try I can't seem to write about them eloquently.   But I want to tell them again and again, because they all point to God and His faithfulness. The acts of "charity" to our family have given us the very manna to stay alive and move forward each day. There are no small acts of love. Each one has been life altering. I want to show my gratitude without using the same overused words. I want to give God ALL the glory, and in my weakness I don't really know how to shine all this on Him.

If you just joined our journey please take some time to go back and read a few of these posts. There are so many. I remember the first gift like it was yesterday. It was April 2010, and we were already drowning in medical bills from the six months of Danica's diagnoses period and her first brain surgery at UH. We found out her Chiari was even worse, and we needed more opinions about how to move forward. At the time we had two vehicles and our most dependable car had bad tires. Dan's company had just cut bonuses. My dad had been given money for a missions trip to China and the trip was cancelled. He came over with an envelope and said the people who had given him the money for his trip asked that he pass it on to us. It was just ENOUGH. It didn't pay all the bills. It didn't pay any of the bills. The money combined with Dan's half bonus bought us tires so we could travel to find help for our girl. We are still driving on those tires.

This was before the "donate" button was prayerfully added to this blog or Cookies for a Cause or the Chick-fil-A fundraiser. It was before the lemonade stand that ended up as an article in The Canton Repository and before the sweet girl from Australia found our blog and began loving us regularly. The lemonade rippled into Comdoc, Sugardale Credit Union and The Foundation for Community Betterment doing a large work rallying an entire community of giving to help us survive. There are so many more stories including the recent fundraiser by our faithful friend Christina Adam at Grace Designs Photography which also prompted her friend, Alivia, to do an online fundraiser for us. There were Tastefully Simple, 31, Willow House and Premier parties whose directors and hostesses donated their profits to us. We did not have the money for me to travel in October for my initial visit to Dr. Henderson, and these directly provided for the doctor's visits in Maryland, gas, hotels and the trip to Cincinnati for Danica's scan and my second opinion and additional scans. Again, there was no money left. It was just ENOUGH.

I often say our story is less about pain and suffering and losing everything we thought was important to us and more about God's faithfulness to care for us in ways we simply could not care for ourselves. God has given us many more challenges including my bowel surgery early last year, Dan's recurrent kidney surgeries, and most recently my brain surgery and fusion. There are always the Cincinnati visits and scans for Danica in the mix and travel and copays and prescriptions. There is no real digging out of this mess in our minds. I used to try to make a spreadsheet and assign dates or goals for contacting certain companies our medical debt has been "sold" to, but I quickly came to realize you can't promise people to pay what isn't there. We keep the most important doctors paid so we can continue to be seen and let the rest slip to collections. We keep hoping and praying I will be well enough to go to work again someday. Then we will set up the plans to slowly pay them off. One thing we are sure of. God will always give us what we need today. We will always have ENOUGH.

I apologize for the crazy long introduction to a new story but stay with me. The week before we headed to Maryland for surgery we had scraped together enough for a fifth of the down payment my surgeon was asking for through my parents and several other gifts. We had several hundred dollars in our checking account for gas and food while we were gone. I had this crazy peace God was going to come through for us. The week wore on, and I began to pack my bags and get a little nervous. I knew our support system was worn thin from the past couple of years and a woman who always had a headache and could barely walk but looked fine for all intents and purposes was not the most engaging fundraising idea especially compared to Danica's adorable face.

I was laying in bed in my oh so dark bedroom curled up in a ball with the weight of the world crushing my brain, head and neck. I wondered if I would even make it to my surgery date. This sounds dramatic unless you really understand how dangerous my situation was. My dad opened the door at the top of the stairs and threw down a letter. It was from a girl who lives in Virginia who I used to work with. I had only met her twice face to face because I telecommuted states away. Over the past months she had begun to faithfully pray for me and encourage me through facebook and email. I opened the card and a check folded in half fell out. I read the note first. I don't have it here to copy directly so I am going to paraphrase the best I can. She said she couldn't sleep and was praying about how she could help us. She said in the night she heard God tell her clearly to "DRAIN IT." She obeyed. I looked at the check. It was a strange number. I found out later it was every penny this family had in their checking account. It was just shy of what we needed to pay the entire deposit. I was shaking. How in the world could someone give like this? This family is not wealthy. This friend works from home with two small children just to make ends meet. I immediately knew God was completely behind this surgery. He had funded it through the most unlikely of places. Oh, I wish you could understand the way it feels to be given something like this. It is so humbling, and so completely heart changing. Once again I was back to the God of just ENOUGH.

It took me awhile before I could finally find a few words to call this friend. I was even more blessed by her backstory to the giving. She shared of her own fear of not having enough and God's work in her life to put her treasure where she said her heart belongs. She talked about how she had called her husband the morning after her prayer, and he too had to commit this huge gift to the Lord before the check she had already written could go in the mail. (Ladies, can you imagine calling your husband and telling him God told you in the night to empty your checking account?) She told me how over the last two quarters of 2011 they had paid all their credit card debt off by careful spending and holding back some tithe. When the card balances were at zero they didn't up their tithe. She later realized what they sent us was almost exactly the amount they had kept back. God already had this provision planned long before either of us knew we would be part of it.

Later that day I received an email of a paypal donation from my cousin who is a missionary in the jungles of Peru. I couldn't stop crying. She only has what God gives her in support. She knows more than anyone how money is not really a currency in the Kingdom of God. She too had been one of my most valiant encouragers through email and facebook. She too gave way more than she should. Here was the money for the plane ticket I didn't even know I was going to need to get home, the hundreds of dollars for the prescriptions Dan picked up when I went from the hospital to the hotel and the money for my dad and I's tickets back out to Maryland in a few weeks. The next day I received a letter from the mother of a childhood friend.  It was a long, handwritten letter about faith whether healing comes or not. She has lived this for the past twenty-four years. She has been sick and searching for so long and yes, continually surrendering to our God who formed our bodies perfectly and writes our stories. I put her letter in my purse. I knew I would need it to read many times over. Inside there was a check. Money I still have for my trip in two weeks and our Cincinnati trip at the end of Febraury for Danica and I. Our deductibles are at zero again. It doesn't matter who we see now, in network and out of network, we owe it all. In the hospital my dear Angie gave me an envelope with money passed on secretly from someone we do not know but who is praying. A few more paypal donations from strangers. More than ENOUGH. Christmas was given to us through gifts from friends and family and the Jr. High group at church and a "loaves and fishes" plea from a family at Delaney's school. We were able to regift money to a family we know who is in great need because of these gifts to us. (A family I hope you will pray for especially in the coming weeks as God is asking them to do more hards things too. You can read Melinda's blog here.)

I didn't want this post to be a litany of givers. He gives ENOUGH. More than ENOUGH. Isn't it amazing? It doesn't matter how many times I tell these stories I still cry. I can't begin to give enough glory to God. He says in 2 Corinthians 9:6-7, "Remember this: Whoever sows sparingly will also reap sparingly, and whoever sows generously will also reap generously. Each of you should give what you have decided in your heart to give, not reluctantly or under compulsion, for God loves a cheerful giver."

One of Dan and I's increased prayers is there will come a time when restoration will come to us financially, and we will be able to live out loud all this amazing love to others who are in need. If this never happens in this life it is okay. We have learned you can lose it all and still own the only thing that really matters in the end.  Christ has gone to prepare a home for us in Heaven even if we never own one here. He has paid all our debts to the Great creditor. He has made a way to sure healing with new bodies and no more pain. We have a spiritual retirement account that will never go bankrupt. This is the future and the plan He has for us. Until the Promised Land we will continue to go out each morning and know the manna will be there.

Soli Deo gloria.

Mission Impossible 4

2012-01-08T10:13:00.000-05:00

People keep telling me they are heading out to see this movie, and if I ever went to the movies with my husband I would like to see it. I think it's been like 10 years since we have gone to the theater just the two of us only because if we ever get a date we want to talk and be with one another instead of sit in the dark and listen to other people talk. Impossible missions seem to be our daily life anyway. Yes, without the fast cars and guns and of course, Tom Cruise, but the plot is thick and everyone is on pins and needles to see what will happen next. I think we might actually be well into at least our fifth or six mission at this point, but, who's counting, right?

One of my favorite quotes from Children's literature is about impossible things. "Alice laughed: "There's no use trying," she said; "one can't believe impossible things."
"I daresay you haven't had much practice," said the Queen. "When I was younger, I always did it for half an hour a day. Why, sometimes I've believed as many as six impossible things before breakfast." Alice in Wonderland, Lewis Carroll

We are not in a fairy tale or an action/adventure movie. This is day in and day out stuff for us and we are tired beyond words. We are discouraged. We are doubtful some days even in the light of all God has already done to carry us this far. Over the last few days I have gone from the euphoric feeling that this surgery maybe is the beginning to me experiencing full healing to understanding it is to keep me living and doing basic things. As my pressure issues increased, and I realized I was near adrenal failure I became very frightened. My friend reminded me gently I may not work again. I am a professional patient. The money Dan makes may be all we have for a very long time. In the face of this realization I am frozen. We may never pay all our medical bills because they will probably always be coming. We may never leave my parent's basement because everything Dan brings home is just enough. Enough for food, copays, prescriptions and saving up for the trips that keep coming and to pay little bills here and there so doctors will continue our care. This thought of staying in a place that was supposed to be transitional, supposed to be a resting place on our way back to being a family again, makes me sick. My stomach churns. I wanted to be the one who had a miracle too. I wanted to be the one who went back to work and saved the day. I'm not humbled enough. What else could He take from me so I finally learn this?
Wait. The real question is what else could He give? He is enough. He has always been enough.

I had a long night wrestling with God. I got up before dawn and went out into the livingroom to read my Bible and pray. For some reason once your bed is soaked with tears it feels less like praying and more like torture. As the sun peaked out over the water beginning to shine on the ice I knew this was one of the most important surrenders yet. I began to make a list of all the IMPOSSIBLE things God has done for our family. I asked for true peace with regard to the coming year and all the needs we have. He brought me to this verse.

"Don't worry about anything; instead pray about everything. Tell God what you need and thank Him for all He has done. If you do this, you will experience God's peace, which is far more wonderful than the human mind can understand. His peace will guard your hearts and minds as you live in Christ Jesus." Phil 4:6-7

I made a cup of coffee, turned on hymns and watched the sun get higher and higher and brighter and brighter. This is the fifth day in a row God has given sunshine to us in Canton, Ohio. This is a weather anomoly for this time of year. I consider it a personal gift before I am asked to head back to my catacomb bedroom in a few weeks. He is giving me as much light as He can. I consider it pure Grace. I booted up my laptop to see if there were any messages from Dan and the girls. This is how we communicate mostly these days rather than phone calls back and forth. I briefly passed a message from "Dayspring" in my inbox. I made a mental note to put it on my spam list as one of my resolutions is to unsubscribe to all these mindless distractions. As I went to delete I caught the words again. POSSIBLE. IMPOSSIBLE. This is what I have been awake most the night struggling with. This was the simple message.

Good News:

There's really no such thing asimpossible for you,
because all things are possible with God.
There's no mountain too high,
no valley too deep,
no trial too wide to stand in His way.
He's with you, for you,
working on your behalf today.
And many who care are praying with you
and standing beside you-
until we see the impossible come true.
--Holley Gerth

"With God all things arepossible." Matthew 19:26

What is calling me?

2012-01-06T18:14:00.000-05:00

I took this picture mid morning in the bedroom where I am staying to recover. This beautiful painting is by Kelly Rae Roberts, a mixed media artist I love. I first found her work at the Cincinnati Children's hospital gift shop when we were there in October, 2010 for Danica's second brain decompression and her fusion. Dan bought me a small canvas to encourage me. The girls have crooked necks just like Danica and I. The words say it all. GROW. BECOME. JOURNEY.

I tucked it away for safe keeping and a day later my mother-in-law Eleanor arrived to visit and to help. Not knowing how enamored I was with Kelly's work she bought me an angel from the gift shop and brought it to me on one of the worst days there. Danica was doing horribly and thrashing for hours and hours and no amount of medication was helping her. I was doubting all my gut decisions and God's leading to this place. I was as bone weary as I have ever been in my life. And then the angel with words arrived.

HAVE FAITH. BELIEVE IN HEALING. EMBRACE YOUR TRUTH. RELEASE YOUR FEAR. CELEBRATE THE LOVE THAT EXISTS IN YOUR LIFE. ASK FOR WHAT YOU NEED. LISTEN TO FORGIVENESS. BE YOURSELF. ALWAYS. NURTURE YOUR SOUL. HOLD ONTO YOUR HOPE.

Fast forward over a year, and I found myself in a hotal in Lanham, Maryland facing almost the exact same surgery my Danica had. I was acting brave, but very deep down inside I was the fiercest kind of afraid you can describe. I wasn't afraid of dying. I was terrified of continuing to suffer like I had been. My sister-in-law, Amy, met us there at the Marriott. She knows me well. She knows the Monica before all this began. She calls me the "Warrior Queen" when I need it most. Inside a bag full of snacks for our room, bottled water, and beautiful magazines I found another angel to hang over my bed. LEAP FEARLESSLY.

Imagine my surprise and delight when Dan and the girls showed up last Saturday afternoon with the painting from the very first picture. It was at a resale shop I adore, and when I saw it and asked the owner about it she was surprised I knew who the artist was. I had never seen Kelly's work so large and on wood. To my knowledge no one in the area even carries her smaller licensed canvas pieces or angels by Demdaco. The owner of the shop told me she got it in Tennessee at a show. I mentioned it offhandedly to Dan.

Dan's birthday is Febraury 1st. Being the planner I am I had emailed him last week asking if there was something small he was wishing for. It seems we never have money around his birthday. I always dream of doing something amazing for him. The fact is January brings all new deductibles. Big ones. Besides Dan and I don't really "want" anything anymore. We long to have a home or even the possibility we might someday have one, able to be a single family unit again and for things to seem like they are moving in a positive direction. Really, the pursuit of owning baubles of this world comes to a dead stop when you are just trying to survive. He knew around $50 was the budget I had in mind. When he and the girls brought it in to the lake house to me last week I knew instantly he had used his birthday budget to buy this for me. I was in love. With the painting, yes, but mostly with him. It's the love that carries us on days that seem too hard, too hopeless, too impossible to keep bearing.

I have been moving her around in the house I am staying in and propping her up against a chair or the couch or a stool. I like seeing her face. I love the moth in her hair. I love the words. WHAT IS CALLING YOU? I love Dan's answer to Delaney when she said, "I don't get it. What does that mean?" He explained to her I was so hopeful to get a new chance to live without pain and explore all my God given talents and gifts and most of all the call I feel to be a mom and a wife in a way I haven't been able to many times because of my pain and suffering.

Many of you know I have had a very rough yesterday with lots of pressure, head numbness and floaties returning. I felt some better this morning. I tried drinking lots to stay very hydrated, taking the fiorcet and resting. I left a message for my neurosurgeon and have spoken several times to his office today. I've been checking my blood pressure hourly. My resting BP is within the normal range, but when I stand it falls very low. Things get black for a minute and the pain in my head intensifies to a much greater level. It's scary and discouraging. My comforts today were in the sunshine dancing everywhere in this house, a breeze of high 40s air coming in the window I cracked while I bathed in my puddle of light and the picture you see first above. I walked into the room, and she had her face turned towards the light just like I would. I grabbed my camera. She gave me courage to spend two hours on the phone coordinating Danica's brain and lumbar MRI in late February with my appointment with Dr. Tinkle so we only have to make one trip to Cincinnati. I booked the hotel room for two nights. I emailed Dan he needed to request three days off. I cringed. I know they are unpaid. I know these visits mean not just a percent owed but the whole owed because it's a new year. I called financial assistance to request a new application for some help. I do this all while breathing prayer and through the film of black squiggles that float across my field of vision.

Tonight I will begin another medication called in to the pharmacy to try to help with pressure. My parent's will go get it for me once Dan is home from his long day at work after turning around from working late last night. My dad watched Danica today. He is still recovering too from lower spinal fusion. I feel guilty. I'm afraid more than anything of not healing or having some kind of debilitating pain the rest of my life and eventually everyone walking away. I've heard of it. People get tired of stories like ours. You know, the ones where the suffering maybe doesn't end, the surgeries and treatments continue just to exist and the bills really never get paid off and resentment or even worse, apathy, creeps in from the people who have already done too much for too long and are just too tired.

I feel afraid tonight. Not hopeful. It's important I can say this out loud. It's my doubt but not my truth. My truth is He will make a way. He has always made a way. And so I turn my eyes away from the girl and look up at the SON. He is calling me. He will keep me in perfect peace if my mind is stayed on Him. (My head feels like it might explode.) Refocus. He is calling my name. It is written on His hands. (My left eye is twitching and the muscles in my calves are jumping.) I hear His voice telling me our hope remains. It is an achor for our souls. (My first tear of the day slips down my cheek.) Hold on. It will not disappoint.

A bloom in the dead of winter

2012-01-04T15:45:00.004-05:00

“And the day came when the risk to remain tight in a bud was more painful than the risk it took to blossom.” Anais Nin

My dear friend Angie facebooked this quote to me today. It's not strange that her kindred heart would know this is the very quote I was thinking of this morning as we walked our Danica Jean in the doors of Lake Center Christian School for her first morning of preschool.

It's all been a risk with this child. The pregnancy was high risk for her and especially for me. Her birth was an emergency and very dangerous. The methods we tried to fix her tortocollis and find the real root of her pain and growing diabilities were risks. The many exposures to radiation were a risk. The first brain decompression was so scary. At her age we knew going in the outcomes were mostly just buying time. Just a few months later we began the fight to find answers anywhere we could because the first surgery was already failing. This led us eventually to her second surgery and fusion. It was riskiest of all. No one wanted to do this surgery although all the experts agreed it needed to be done. Every day after October 5, 2010 EVERYTHING became risk analysis. For more than a year we kept Danica from doing almost anything normal three year olds would do. We said "No", "Be careful", "Watch out", "Hold my hand" and the words "We have to keep your neck and brain safe" more times than I could ever count. Have you seen her beautiful white swan neck? Have you? Do you believe in miracles? Have you ever witnessed one? Have you ever lived one?

Danica had many dreams of her own as she patiently waited in this bud of hope all these years. Attending preschool is one that fell right under her Disney wish trip. She is exceptionally bright and more than ready for this social interaction, time away from her mommy and lots of learning and exploring. We are beyond blessed she is able to begin it at such a special place where so many of the school families have been praying for her for years, following her story and loving us well. Danica is like a hero there. Everyone knows her face and name. My mom's office is just across the hall from her room too. It's pretty amazing to have your grandma be your principal!

This cold January morning was a day we will never forget because our family got up TOGETHER. Danica excitedly got dressed and was bursting at the seams with anticipation to bloom. She had no anxiety at all. She has lived in a world of adults and scary machines and pain and limitations. This day was not tapping into courage at all. It was only joy for her.

We went in. Danica hung up her coat and bag in the little foyer area, and she signed herself in on the board. The other children were ready for her. Mrs. Barber, her teacher, was waiting with open arms. There was no look back to me for any reassurance. She was gone in a second to wash her hands and choose an activity. Dan and I stepped out of the door, and I let a few tears fall. Mrs. Pappano was just outside. She gave me a hug and reminded me how everyone there already loved Danica and would take such good care of her.

I was supposed to begin physical therapy this morning, but there was some mix up with the prescriptions getting faxed over so instead Dan and I went to breakfast. He brought me back here to the lake house, and we snuggled for a little while which is such a rare treat. I can still smell him, and it makes me feel less alone. As soon as Danica left at 11:30 Danica's teacher emailed me to share what a success today was and how Danica instantly blended in. She said they had a large motor skill activity that would be on Danica's restriction list and Danica was sweetly compliant to sit out. I loved knowing especially they were taking her safety seriously and understanding the limitations that remain. I called Danica at home to talk to her about her morning, and Dan said she got home and said, "We need to take naps!" She had gone in her room to take some down time already. This is so Danica. She takes rest when she needs it. She is in many ways so much wiser than her age. She is a rare flower.

Last night I stayed at home and tucked each of the girls in like normal since Dan is working nights for the next month on her preschool days. Danica fell asleep in five minutes as "Sleep Sound in Jesus" played, and I rubbed her back and sniffed her sweetness. I lingered. Then I made my way across the hall to my Laney. She had so much new art to show me and we talked about print making and how her designs of colors and patterns could be used in fabric or wallpaper and other ways, expanding her understanding of how art could be her career. She talked and talked to me, trying to catch me up on the weeks I've missed, and then she said, "I'm sorry I'm so chatty tonight. I just missed you." Oh, special girl of mine, me too. So much. We hugged and prayed and then I slipped out to my own bed. I cried. It's going to be okay. There are so many more blossomings in our coming year. I know it. Thank you, God.

I've been working on my "vision board" for 2012. It's like the quarterly collages I make only on a much larger scale. I found a picture of bulbs coming up through a late spring snow. I have this quote beside it, "Underneath the drifts, seeds are waiting. There courage is incomparable. Their patience unequaled. Hunkered down and hopeful, they sit out the frozen tundra, knowing and trusting that spring eventually will arrive. If ever you feel unsteady in the face of life's winters, consider seeds and their faith." Tovah Martin

Spring always comes. Today was a little taste of how seeds of faith and patient waiting on God always bloom into something beautiful.

"Those who sow with tears will reap with songs of joy. Those who go out weeping, carrying seed to sow, will return with songs of joy, carrying sheaves with them." Psalm 126:5-6

All the Grace things

2012-01-01T23:58:00.001-05:00

“When God gives you a redemptive story, He’ll ask you to live it’s truth out over again, in a thousand different ways, even when you think you learned this way already. God intends to write His story deep into us and there is always more grace to experience." Ann Voskamp

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Plans . . . A Dan Post

2011-12-30T19:08:00.004-05:00

“For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hopeand a future.” Jeremiah 29:11

I guess this entry is me taking a stab at writing our familyChristmas letter wrapping up 2011. Thisyear many of you received a special holiday card picturing Delaney's awardwinning artwork of a Christmas tree. Wealso included a picture of our beautiful girls from our "Wishes CanHappen" Disney trip in April. Usually my wife writes a summary of our year and includes it with ourcards. She always chooses a beautifulquote, and it’s full of little details about our family and what we have beenup to. I know she tried a few times tobegin one in the last month, but she really didn’t have the heart.

Christmastime for me begins when one hears Christmas musicon the radio all day. For some reason,the carols and the music surrounding the holiday begin to soften me to thespirit of the season. If I could I wouldlisten to Christmas music 24/7. OuriTunes library has so much Christmas music you would think it almost strange. Why someone needs twelve versions of “TheLittle Drummer Boy” I’m not sure, but we have them. My all time favorite has to be Nat KingCole's "The Christmas Song." Itdescribes a picture perfect, storybook Christmas.

Our family has a tradition of decorating our home for theseason on Thanksgiving Day. Personally,I love the way our space looks with the Christmas tree, all the smaller Christmastrees scattered about, and the seasonal knick-knacks on the tables andshelves. I especially love the WillowTree Nativity displayed in a place of honor. Since our first Christmas together in 1999, before we were even married,my wife has slowly added a few beautiful things to our collection eachyear. Our tree is full of meaningfulornaments that tell a story of who we are. It gives the house an even more cozy, comforting appeal, especially thisyear since we live in a lower level (basement) setting. The decor usually lasts until the firstweekend in January when it's time to begin a fresh new twelve months oflife. We are always a little sad to takeeverything down and store it away. Thehouse always seems a little “blah” until Monica begins to introduce some subtledécor changes for spring in March or so.

Our holiday season started off on the wrong foot. I recall sitting in a hospital room inMaryland on Thanksgiving Day when the nurse came in stating everyone would geta "turkey dinner" that day. They skipped me because only patients getfed. Neither Monica nor I had an appetite that dayanyway. Besides, there is no substitutefor a huge oven-roasted turkey set on the table surrounded by your family. We were stuck in a hospital room, again, awayfrom our children, again, counting down the days until we could get home.

Christmas fared a little better. Knowing we would not be home forThanksgiving, we managed to get our heirloom ornaments up on the tree a littleearly without breaking a single one. Even with Monica secluded in her recovery house alone, the kids and Imanaged to wrap a few gifts and set them under the tree. "Wrapping" a present sunk to newlevels without Monica there to organize and supervise. Monica always says, “God is in the details.”   Sheapplies this to gift giving in a special way. For the girls and I it was tape and wrapping paper only; no ribbons orbows and no nametags. I think it was myfather who first broke out the black Sharpie as a suitable substitute fornametags. I had flash backs to the yearmy mom died on December 29^th, 1984. My dad left a blank check on the counter for my sister and I to go buy atree those sad weeks before Christmas as she slipped away. I am not sure who bought us gifts thatyear. I guarantee you they didn’t havebows or tags.

I began to try to settle into my role of “Mr. mom” and keepthings as light and cheerful as I could for Delaney and Danica. Presents began to arrive in boxes from familyand friends who so dearly remembered our children. The week before Christmas two huge totes ofgifts all selected and wrapped arrived from our church’s Jr. High group. The girls were sure this was going to be thebest Christmas ever.   Even though thepresents under the tree were satiating my children’s Christmas hopes, I stillremained alone without my best friend and wife. Monica was spending her days at the vacant house on the lake twentyminutes away. She would try to call and"check in" but usually I was busy with chores and upkeep and the kidswere usually off playing or deep into a movie. Her calls left her feeling like we had in a short time moved on withouther. They just reminded me how hard thiswas for all of us. It helps a little to have fellow adults justupstairs but after the kids go to bed the evenings are lonely as are the earlymornings. The days leading up to and thedays following Christmas just didn't seem festive. The heart of our home is gone.

Monica spent Christmas Eve and Christmas Day with us at ourhome, but she was in no condition to play her part as mom and wife. In fact, it was actually nerve racking to seeher try to resume her natural instincts to control her environment. While she should have been resting in bed,she was cleaning the house and trying to organize everything the way she needsand wants it to be. This was veryfrustrating to witness, and the two days passed by quickly. When Monica’s parents are available to watchthe girls overnight I have been able to go stay with Monica a few nights. These visits at the lake house are rewarding,but I feel more like an out of town relative. We usually catch up on news or plan the next few days.

So with the Christmas gifts unwrapped we gave thanks for thebirth of our Savior and Monica returned the next day to her recoveryhouse. I began to box up all ourdecorations early. As of Wednesdayevening our basement is back to “normal”. Christmas plus two days and it's over. A Christmas solstice I call it. It seemed like a moment instead of a season. It’s come and gone just like that, and I justdon’t feel right.

Our family continues to manage adversity through God’sstrength. Our two daughters arehealthier now as ever. Delaney has alifelong friend in her new puppy Twixy. She is doing really well in fourth grade at Lake Center Christian School. Danica is excited to begin pre-school there inearly January. She loves attendingSunday School and AWANA at church. Sheis hungry to experience her own world and finally be well enough to spread herwings. Danica is now the second bravestgirl I know.

Monica is recovering in peace thanks to a family I have noteven had the pleasure of meeting yet. Their lake house is perfect for Monica. So many times over the last four years I have prayed I could give her atrue period of rest and soul healing. God knew she needed this time and space. When I'm there I like to lay on the couch and look almost straight upthrough the large window panels to see a bright shining star overhead. In the daylight, the sun's reflection off thewater casts dancing shadows on the walls.

I tell people I am doing "lovely" should theyinquire, but I am extremely frustrated internally. I am grateful for food and shelter. We would have never made it through the lastyear without Monica’s parent’s generous opening of their home to us andconstant help in caring for our girls when I am working. They have made huge personal sacrifices toget us this far. I am blessed with thefamily God has given me. The company Iwork for is stable and has a "whatever it takes" attitude when helpingthose in need. I am completely out ofpaid time off but am covered with FMLA for the inevitable doctor’s appointmentsand trips that still need to be made to maintain Danica and Monica’s care.

I miss my wife in a way I cannot explain. She is part of me, and it is missing when sheis. Still, I fear that when Monicareturns to her living quarters, her soul may be dampened. I see how having her own space sparks hergreat hope for a home of our own again. Forthe past several weeks her spirit has been given plenty of gracioussunlight. She has meditated in a quiet,spacious environment. She has time tofollow her call to write and follow up with friends and family. When she returns to our dim basement environmentand especially our bedroom without any natural light or fresh air I know itwill take a toll on her physical, mental, emotional and spiritual wellbeing.   She longs to create our ownfamily rhythms again. She wants to cookdinners in her kitchen and have family meals and play our playlists as loud aswe want and just be us.

I stayed with Monica last night. We had a fight. We rarely fight, but there was somethingabout our anticipation of seeing one another and then sitting across from oneanother on the couch and talking about our open wounds that made us both sadand helpless. We made up, of course, andI wrote her loves notes to find when she woke this morning since I slipped outearly to work. God has humbled me. Much of the “shame” I have wrestled with hasturned into the realization that I am doing the best I can and the most I canright now. My income is steady but not alot compared to what life has handed us.  $7000 is taken annually from mypay for benefits. But, I have ajob. For almost four years I have beenable to provide health coverage for my family who lives and breathes by accessto medical care from some of the best specialists. I have always looked to Monica to help. She always has. When she resigned from her job last Octoberto care for Danica and her recovery we knew it would be very tight. After we moved into her parent’s home herhealth declined so greatly, and I began to wonder if she would ever be able tohelp again. I wonder how will we evermove forward from this seemingly impossible situation back to our own home, theone thing I know we all really need to fully heal.

Monica dreams of working again. She is always amazing at anything shedoes. Her hopes are to somehow be ableto do some kind of work by at least this fall when Danica could go to preschoolfulltime. I dream of living in the smallhome for sale across the street where we live. It is a modest home all on one floor with plenty of sun-filled windowsand just big enough for our family. We would still remain close by to Monica's amazingparents and her grandmother and great aunt, Anna Mae, to help care for them. It is the dream I dream over and over againevery night almost as if wishing and praying hard enough will somehow make ithappen. I want Monica to come home fromher follow up visit to Dr. Henderson in late January and take her there andunlock the door. As the new year approachesI have no resolutions. I read this quotethe other day by Harvey MacKay. "A dream is just a dream. A goal is a dream with a plan and a deadline." There is no way I can make any kind of plan to make this dream come true. There is no way I can set some kind of deadline for our family to return to our own space, fling open the doors and windows and shout, "Praise God, we finally made it!" I have to continue to believe God has a plan. He has never left us. He has cared for us in unimaginable ways. He has accomplished impossible things. I will continue to hope.

A Secret Gift

2011-12-25T16:47:00.000-05:00

By His Grace. Through His Strength. Dan. Delaney. Danica.

I wanted to write this post as a Christmas letter and physically include it with our cards and email it to our cyber friends, but I have wrestled with it in a strange way. I have started and deleted several "drafts" with words that almost express the feelings but never really seem to do them justice. This morning I am inspired to try again by a gift that was waiting for me under our tree. No one knew who it was from. It was wrapped in the most beautiful red polka dot paper, tied with a "Tiffany" blue ribbon and one simple pearl. The stunningly simple hand stamped necklace reads my life mantra and the names of my husband and girls.The note which is photographed above as well reads:

"A very merry Christmas to you from The Vintage Pearl.

WE LOVE TO BLESS PEOPLE,

AND WE LOVE SURPRISES,

SO THIS CHRISTMAS WE WANTED TO SHARE SOME

UNEXPECTED LOVE AND JOY WITH OTHERS!

We asked our blog followers to nominate someone special for our

giveaway . . . and . . .

You have been nominated by someone special for our "Share a Blessing" give away!!!"

I cried. It is the perfect SECRET gift.

I came home from my "rehab" lake house yesterday morning to rejoin my family for a few days to celebrate Christmas. By last evening I was in so much pain and every part of my brain was haywire. There was a new puppy in the house and clearly the routine we have lived by for years has been put out to pasture since I have been away. In the month I've been gone my family has managed and in the process my space is very different. Every single one of Danica's toys was disorganized. You only understand this if you have seen my VERY particular way of keeping my girl's things in marked Sterlite containers with a hard and fast rule. "If you get something out you put it away. Then AND ONLY THEN can another toy or activity be introduced." I often scratch my head when I read people's facebook posts always remarking how messy their houses are. For me it's really this simple. Apparently I am the only one who took this seriously or enforced it. I kept finding Squinkies and Barbie things and marbles and stickers and Disney Princess dress up and Strawberry Shortcake things everywhere. Her closet is like someone stuffed everything in there because they knew I was coming home. I was flipping out and just as expected began trying to remedy the situation and bending my back and neck which is totally not okay at this point in my recovery. I began to hurt very badly and also started to cry and sob. Everyone kept telling me, "Go get in bed." But who was going to coordinate the reading of the Christmas story and prayer and opening Christmas jammies and writing notes to Santa and putting out cookies and milk for him and carrots out back for the reindeer? We pushed through these traditions with Dan and my dad and my mom helping, and I collapsed into bed. The night was almost comical. Danica tried to sleep with me and kept coughing and kicking me, and I truly did not sleep a wink. Poor Delaney was spending the first night trying to figure out how to mother her new puppy, Twixie. Just like an infant she wanted to be held and attended to and Delaney came in crying, "I don't know if I can do this." Dan intervened. I think we both just prayed for morning to come, and it finally did.

I have never seen so many gifts under one tree for one family. Dan and I truly bought our girls each a couple simple gifts and did stockings with a secret monetary gift given to us for that specific purpose. You see a family like ours feels guilty when we spend money on anything except trying to pay the many medical professionals who have served us and saved our lives. The mountain of debt we have accumulated is not from mass consumption. It is from survival. God knows our hearts. He brought us here. Through wisdom we have tried to pick and choose who we can pay and when and then leave our anxiety about the rest with The Great Provider. The abundance today was completely overwhelming. How in the world can our family be this loved and blessed? Many of the gifts had a name after "to" but no name after "from". We were adopted by our church's Jr. High group, and they did an amazing job secretly shopping and wrapping and organizing the best Christmas ever when I could not do anything. Helpless to make any kind of elaborate Christmas happen financially or otherwise SO MANY stepped in and took care of the details. Even the amazing addition to our family of Delaney's long awaited heart desire, a pup, was an extravagant secret gift from my dad, playing Santa.

It's noon, and I'm back in bed and have taken a much needed a muscle relaxer and pain medication. I am exhausted, but my heart and mind are fixated on all of you, the secret givers, the ones who have watched from afar for years now as we have suffered and healed and many times taken one step forward only to fall two back. Every once in awhile someone will facebook friend me or write me an email or suddenly comment on the blog admitting they have been reading and praying and often God provides for our family in times of great need at the very last minute from the most unexpected person or place. It's beautiful and life changing. I know there is an entire book waiting in just those stories.

I am inspired to begin to document them all because of a very special book I know God did not bring into my life by accident. The title is A Secret Gift. It is a beautiful true account written by Ted Gup about a campaign his grandfather began in Canton, Ohio in 1933, during the depths of the Depression. He placed a very simple advertisement in the Canton Repository on Monday morning, December 17th, that read:

In Consideration Of The White Collar Man!

Suppose if I were confronted with an economic situation where the bread of tomorrow is the problem of today—there is a question in my mind if I would accept charity directly offered by welfare organizations. I know there are hundreds of men that are confronted with economic problems and think, feel and act the same way.

To men or families in such position the maker of this offer, who will remain unknown to the very end, will be glad if he is given an opportunity to help from 50 to 75 such families so they will be able to spend a merry and joyful Christmas.

To such men or families that will request such financial aid, the writer pledges that their identity will never be revealed. Please write:

B. Virdot, General Delivery, Canton, Ohio

In writing, please familiarize me with your true circumstances and financial aid will be promptly sent.

My book club, who I've written of many times, chose this book as our December selection. I had not purchased it or checked it out of the library when I was headed for surgery in late November. I couldn't read anymore for any length of time because of the crushing headache and black floaters in my right eye and the way my right hand would go numb when holding anything. The Saturday before we left for Maryland my parents took me to the beautiful home on Lake Cable I am recovering in. Again, this place to stay was a gift from strangers to me, children of friends of my parents. The only book lying on their console was "A Secret Gift." It was signed by the author. Ten days later I returned from a mountain top experience. I know, brain surgery and spinal fusion aren't usually described this way, but I knew I was healed to some degree already. Hurting, yes, in all the ways you would expect after such a major operation, but I could see without a single black floater. Although my incisions and nerve numbness were very painful I did not have a headache and my hands were not numb at all! I think I slept the first couple of days at the lake, but my first order of business as I came out of the fog was to dive into Ted Gup's book.

I'm not going to give much away, because I hope you will buy it or borrow it and read it. It's an amazing historical account of Canton during the Depression. Most importantly it is a story about a man, Sam Stone, who had been blessed and sheltered in some ways from the economy, made up a fictitious name and reached out to others in need at Christmas. Many of the letters he received are included in the book as people wrote for just a little something to feed their family or surprise their children with needed shoes and coats or a trinket of Christmas joy. Some of the letters were sent as "nominations" for others similar to what happened with the necklace I received today and the secret Christmas money we received as a family from a plea sent out by another stranger who has been quietly following our story. The most important theme through the entire book is how often by sharing what we can with others it is not really the gift that endures but the HOPE there is love remaining in this harsh world, and we are not alone. The families in the book were hard working and proud. When the economy plummeted and their lives spiraled out of control there was no amount of gumption that could save their jobs or the money they had saved in banks that folded. They were victims of similar circumstances that have brought our family to this humble place without a home of our own and so dependent in many ways on the care of others. Five years ago we would have been considered well to do, upwardly mobile and the ones most likely to give charity. Here we sit humbled beyond measure by God's change in plans for our life and by YOUR love.

Really, this post is a thank you note to each and every one of you who has given in big and small ways to us quietly and secretly and out loud. We can never repay you personally, but we pray fervently God would bring us back full circle to give to others as richly as we have been given to and even more abundantly so. We love you, those we know and those who have stayed hidden for years reading our story and faithfully praying for us.

Merry Christmas. May you know the HOPE we have come to live in By His Grace. Through His Strength. Dan, Monica, Delaney and Danica

What kind of God?

2011-12-22T17:18:00.004-05:00

“What comes into our minds when we think about God is the most important thing about us.” ― A.W. Tozer

In my recovery I've had the privilege of much more time than usual to spend reading and praying and searching my heart. One of the greatest struggles I have had since a child is reconciling theology taught to me from a young age, some very right but taught in a wrong spirit and some clearly wrong, with my own reason (always a minefield) and also the pull of humanism and all kinds of other religions that sell a different God than the Bible and TRUTH. Yes, a dirty word, but I'll say it. The above quote has been critical to me this past year as I have grappled with the question asked for centuries, "What kind of God could allow . . .?" You can pretty much fill in the blank. There are so many really hideous things happening in the world today. As God has enlarged our community through Danica's illness and mine we are open to even more suffering than I ever thought I could bear. When applied personally to our lives it leaves some people who don't know God watching from afar scratching their heads. How can they have endured so much pain and loss for so long and still say it comes from the hand of a LOVING God who has planned it all from the beginning? How can they bless His name and give Him praise for even all these bad things?

In my own Advent worship I've been reading the different gospel accounts of Christ's birth. Like many passages in the Bible we seem to gravitate to and focus on parts of the stories that make our hearts swell with emotion. Every one loves a choir singing of peace on earth, goodwill towards men and a baby that doesn't cry. The miracle of the birth of Christ has been read through time, embellished and romanticized, sung about in carols and celebrated by many who never really desire to understand the rest of the God who WAS the very human baby Jesus born in the manger so long ago. Mary is celebrated. Joseph was the best "baby daddy" ever. The wise men and the shepherds are heroes. Truly, there was so much more going on there that night than the nativity scene we set in our homes and altars.

As I was reading Matthew's telling of the Christmas story I faultered a little when I got to the section "Massacre of the Innocents" in chapter 2, verses 16-18. I knew it was there, but only because Herod is generally told as the "bad guy" in this epic, and He wanted Jesus dead in the off chance he really was going to become the literal "King of the Jews." I don't remember anyone ever preaching about these verses in an expository way or focusing on them at all. I think we always just kind've stop when Joseph whisks Mary and Jesus away for safe keeping in Egypt and then fast forward to Christ's "idyllic" childhood in the carpenter shop once they return. Not much else is told to us until we get into the thick of His earthly ministry leading up to the greatest sacrifice, His death on the cross for our sins.

Here's the verses so you don't have to run and look them up:

"Then Herod, when he saw that he was deceived by the wise men, was exceedingly angry; and he sent forth and put to death all the male children who were in Bethlehem and in all its districts, from two years old and under, according to the time which he had determined from the wise men. Then was fulfilled what was spoken by Jeremiah the prophet, saying: 'A voice was heard in Ramah, lamentation, weeping, and great mourning, Rachel weeping for her children, refusing to be comforted, because they are no more.'"

What kind of God needed to allow every other baby boy to be murdered to fulfill His saving plan? If Christ's death on the cross was such a great sacrifice then what was this? Every single family with a baby boy two and under in the region had their sons snatched from their homes and brutally killed. We start in Matthew and separate the Old Testament law from the New Testament and grace. There are so many beautiful truths about how the saving work of Christ changed how we access God and how we are forgiven. Praise God it is finished. There is no more need for continual shedding of blood and sacrifices on man made altars. So why this great sacrifice of all these lives as soon as the Savior finally enters the world? Is it just to fulfill a prophesy? If so, why? Do I really want my God to be a God who says, "Because I said so." If I didn't have the light and the grace of the New Testament would I believe in the Old Testament God? Here's the thing. He never changed. The person and work of Christ did not change the Alpha and Omega. He was and is and is to come. He gives and He takes away. He wrote this story from beginning to end before any of it was spoken into existence. Blessed be His name.

So what comes to mind when I think of God? What kind of God needed to allow the physical pain, emotional suffering and loss and financial ruin to our family these past four years? If He loves us so much that He sent His only Son to die for every single one of our sins why would He let us be hurt this way for so long?

If you read back to the beginning posts on this blog you see so many of these questions written and wrestled out loud by Dan and I. The doctrine of God's providence was something we knew but had never been asked to believe in like this. The answer is simple. God is God. His ways are so much higher than ours. His purposes are always about the soul. We see in a mirror dimly what will someday be shown clearly to us face to face. We will know what is already known by Him. We are so much more than flesh and blood. We are made in His image. Who are we to travel back to Eden and believe the lie we could ever be as wise as the one who made us, gave us breath and chose us to be redeemed? Every single bit of this is more than we deserve. It is all grace and we walk by faith.

In my very first post about Danica's Chiari diagnosis I ended with a quote from Oswald Chambers. I committed it to memory and have returned to it a hundred times in this walk. It is the answer to the question that still nags on days like today when my family seems so far and pain is still oh so present and the future seems unclear. What kind of God?

"Living a life of faith means never knowing where you are being led. But it does mean loving and knowing the One who is leading. It is literally a life of faith, not of understanding and reason — a life of knowing him who calls us to go."

As I sit at the manger and think and pray about a new year I am asking for God to turn my heart and mind from the uncertainty and fear of what could come next and from asking the questions about how in the world could we ever really be healed and restored to just wanting to KNOW HIM MORE, listen to His call and go where He leads. It really is that simple and beautiful.

The stone

2011-12-18T21:28:00.002-05:00

I've written about the importance of stones in my life before. I have a bowl of special ones in a place of honor in our home I sometimes choose to hold when I pray, and I have a treasure box where I keep stones I've found or my children have found and lovingly given me. It's a part of the Jewish tradition I was seemingly born knowing about and embracing.

I read this poem by Barbara Crooker in a lovely book of comfort prayers my friend Lee gifted me the week I came home from surgery. It was as if it had been written for my family and I. Like most poetry I read it many times before I could understand it. Different things would soak in as I turned the words over and over in my head and heart much like you get to know a rock or a pebble if you hold it long enough.

Tonight as I talked to Dan and the girls on the phone my heart swelled not with sadness but with the most powerful gratefulness that through God's grace we have carried our stone and polished it through tears and pain and grief into something shining and so beautiful you can scarcely look at it. I hung up and opened the book back up to the marked page.

THE STONE

The stone
was heavy.
The family carried it
with them
all day.
Not one could bear
its weight, alone.
Yet how they loved it.
No other stone had
its denseness,
its particular way
of bending the light.
They could not take
the stone
out in public,
had to keep it at home,
let it sing songs
in its own strange language,
syllables of schist and shale.
When the mother's back ached,
the father took the stone
for awhile, then passed it
from sister to sister.
The stone became
a part of them,
a bit of granite
in the spine,
a shard of calcite
in the heart.
Sometimes
its weight
pressed them thin,
transparent
as wildflowers
left in the dictionary.
Sometimes
it was
lighter
than air.
The stone
did not talk
But it shone.

2007 was the year Danica was born and our journey of living with way more than we ever needed turned into waking in the morning and looking for manna. It was the year I spent months in the hospital and sent my Laney away to Ohio and our miracle baby came to the world and then the NICU. It was the year we lost our credit and the ledger sheets turned upside down into zero. We had no money for gifts at all yet somehow Dan scraped together the money to buy me a beautiful inexpensive necklace from a little shop I loved in downtown Rockville, MD. It had a simple gold leaf pattern covering a silver rectangle with a quote engraved in the metal. It read,

"The most beautiful stones have been washed by the waters and polished to brilliance by life's strongest storms."

I have since parted with the gift. I gave it to someone I love who was going through a strong storm in her own life. It meant so much to me that gifting it seemed like the only way to really show her how much I cared and understood and so I painfully passed it on. But the sentiment stays with me and reminds me how Dan and I believed we were coming out of the storm that day he gave it to me, and we thought we had carried the heaviest things God could possibly ask us to. Little did we know He would give us so much more bear for so much longer.

I see now more clearly than ever how being polished and changed into something that shines for the glory of God is a gift beyond measure. I hope and pray a long awaited time of calm and restoration is coming soon, but my heart is ready for whatever He deems best.

While we watch and wait to see what God will do next our family will continue to collect stones as reminders of God's faithfulness. He is our Ebenezer.

"Then Samuel took a stone and set it up between Mizpah and Shen, and called its name Ebenezer, saying, "Thus far the Lord has helped us." I Samuel 7:12

Howard Hughes and things I'm missing

2011-12-14T13:50:00.004-05:00

I think I'm maybe just a little grumpy today. I figure I'm entitled to have a day or two when the barometric pressure reminds me this surgery is not a total fix for the complex medical issues I have, some of which will be a life long struggle for me, and I still just let myself go to a discouraged place for a little while. I've been trying to hard to focus on all the amazing positive gifts God has given and the healing. If I'm totally honest, I've even been playing the Pollyanna "glad game" to try and keep my mind/body connection moving in a forward direction.

I woke up this morning to cold rain and my head hurts. Thank goodness, it's nothing like before, but still really bad, especially where those crazy screws were in the top. I think I'm still miffed I just never realized they were going to screw my head to something. How could I not have known that? My joints hurt. This is my EDS. I cannot be cured of this or even have it "fixed" in some way by a surgery. I will see the geneticist in Cincinnati in February to discuss management and possible treatments to help me deal with this ongoing pain. But realistically it's just something God has asked me to do. Much of the widespread pain I had before my recent surgery has resolved, especially the neck and shoulder pain which was unbearable and crippling. I was cautiously optimistic because of all the drugs I have been taking. As I have been working on dialing back the medication this week, I still feel so much better overall than I have in years. This is good. Very good.

I think it's the annoying little things about my recovery and new "disabilities" that I'm finding hardest to cope with and maybe just a little bit of loneliness for my husband and my kids and my space. Yes, I even miss my basement home and "bomb shelter" bedroom over this gorgeous light filled space, because it's where my people are.

I thought I'd make a little list of things I miss. Maybe it will help ME to appreciate them if and when I ever get them back but maybe just maybe it will make YOU feel more sane and more grateful today and even make you laugh a little which is the best medicine, right?

1. Shaving. This is not a random choice for number one. I have not been able to shave since the morning of my surgery. I am Howard Hughes in sooo many ways and hair removal tops my list of OCD issues. I cannot in any way move my neck and head and body to shave. Last week when Dan was coming for date night I thought I would at least try to shave my armpits. To my horror I realized I cannot look over to the right and left enough to even see them. This is a problem, people. short of beginning a fund for laser hair removal or finding a stranger to come wax me periodically because a friendship would clearly be ended over this kind of interaction, I am in trouble. BIG trouble. I spend a lot of time thinking about how to solve this problem . . . SOON.

2. Tweezing. In the same vein, but also a critical part of my hygiene, I tweeze daily. I tweeze my eyebrows and any random facial hair and my one genetic chin whisker that pops out without warning. Again, I cannot move my face or head or hold a hand mirror or in any real way get this properly accomplished. It is making me crazy! At home I would climb up on our bathroom sink criss cross applesauce and tweeze. My husband and kids know if mom's in the bathroom for more than a half a minute and if the door is locked this is my "me" time. One of my requests to Dan if I ever become a "vegetable" is please, oh please, have someone come and tweeze me. Last night I even forgot I cannot look down at my own body and see my own boobs. I was worried. Don't worry, I don't have "hairy" boobs, but you know how every once in awhile there is a hair that appears and needs to immediately be taken care of. It's something women in our culture don't just do. We take it seriously. We don't speak of it even amongst ourselves, but it has to be done to keep the civilized world running. Well, I've outed us. Things are spinning out of control.

3. Caring for my feet and toenails, oh and clothes. I should have gone for a pedicure before surgery. It's not like I could really even hold my head up or felt well enough to care but now I do. I would ask someone to drive me to get one this second. I would spend money to have someone else fix these rough feet with nails too long and polish grown out except for the above mentioned issue of unshaved legs. I would be too embarrased to have anyone near my feet and legs to let them do my toes. Add on to this not wearing anything besides sweats and pajamas, ugly flat shoes and a pony tail for months and a self image problem emerges. Yes, I am so much more than clothes and hair and toenails too, but I'm the classic beauty, right? For years I have worn timeless clothes and beautiful scarves and simple jewelry which everyone wondered how I could afford when the truth is I probably bought them at least five years ago when I could afford them, but they are gorgeous still because they are classics. I haven't bought real clothes in a very long time. I really want to be pretty again, not in the vain sense but in the "her clothing is fine linen and purple" way. Oh, and I bet that virtuous women had trim feet. I'm just saying.

4. Driving. I drove very little for months before my surgery because I had passed out a few times and frankly after seeing the 3DCT of what my neck looked like when I turned to the right or the left I realized I was most likely putting my own life and the lives of others in danger by continuing to drive. Not to mention I could barely get out of bed anyway, and we only have one vehicle. I have been home bound for so long you would think this would be further down the list but I REALLY miss being able to go putz for an hour at Marshalls or go to the grocery store and pick out what I want to eat. I'm so tired of wasting so much time browsing online sites for little Christmas stocking gifts I could just get at Walgreens if I could only go there. I wish I could pick Delaney up from school or take Danica to Chic-fil-A. I've had my driver's license since the day I turned 16, and I have always associated driving with freedom and the ability to escape any situation when I need to but also make something happen when I want to. These things are gone now. I do not know when I will be allowed to drive again or how easily I will be able to with my new "range of motion." I think about it a lot. If I get special big new "old lady" mirrors don't laugh.

5. Drinking. drinking alcohol is a Christian liberty issue I'm in no way prepared to address here and certainly don't want to get private emails or facebook messages about it. If I cause you to stumble dear brother or sister, I am sorry, and we can address that in a different forum. Technically it has been months since I've had anything to drink so it's a non issue right now. That being said, oh how I miss having a glass of red wine. It makes me almost cry. Anyone who knows me well knows I always had at least a split in the fridge because at any moment something might need to be celebrated. Life and champagne are friends that must hold hands often. I really want to "Cheers!" something soon.

6. Cleaning. This is a little sick but then again if you've read this far you get the picture. I am desperate to clean something. It really hurts me to want to do this so badly and truly be physically unable. Now that I've been living here two weeks I've figured out how to swiffer the hard woods for "exercise" to avoid blood clots and yes, may empty my bathroom trashcan EVERY morning, but I want to vacuum and dust and clean my toilet, and I can't. My own family has been taunting me about how they are living the life over there. Delaney tells me, "Dad let us make a big fort of blankets and pillows and animals and then we just went to bed and LEFT IT THERE."

7. Tucking my girls in. Listen, all this other "coo coo for cocoa puffs" stuff aside, if you get to be there every night to tell your kids you love them, sing to them, read to them and tuck them in knowing they will be the first thing you'll see in the morning, thank God. Don't rush through it no matter how tired you are. In all my years of illness and pain this is the one thing I always pushed myself to do. It is the thing my girls are sure of. It's the thing I will do long past when they want me to and the thing I'll cry about every night after they leave for college or whatever else God might take them away from me to do. I snuggle in and talk to them and ask them questions about what made them happy or sad that day and we pray and we pick a sleep playlist, and I stroke their hair or rub their back, and they know, they know without a doubt, they are loved and safe and no matter what it's going to be alright.

And you thought I wasn't going to make you cry today!

21 days

2011-12-12T16:42:00.001-05:00

Seven days times three is supposed to be the all important milestone for all kinds of recovery and healing. I made it! Three weeks ago today I did the bravest thing for mysef I think I've ever done. I had brain surgery and spinal fusion. I had come to a point of pain and suffering that left me almost incapable of living any real life. I was as desperate for help as one can get. I also had a peace beyond measure God had brought me to the right surgeon, the right hospital and the right time and watched Him provide in every detail as we prepared. I was so ready.

My sister-in-law, Amy, who I've written of before, because she has walked with me some of the loneliest days and nights of my life and is always there to handle things when everyone else can be sure to fall apart. She is one who was there with me the morning of surgery. She stayed at the hotel the night before and took me over to the hospital to get the ball rolling with all the pre-op stuff including my PICC. I can't really write about how much I love this lady or how much her being there with me meant to Dan and I. She knows how to say or do the perfect thing to remind me I am a "Warrior Queen." She tells me I've got this, and I believe her.

I haven't wanted to really speak much yet about my actual surgery experience or how I'm feeling although I cry about it several times a day. So many of the risks come after you leave the hospital. I read the Caring Bridge sites and facebook posts of other ladies who had similar surgeries who are having complications. As someone reminded me this past week the kind of healing I'm doing is a marathon not a sprint. You have to stay the course. You have to endure the pain and sacrifices now for the best finish.

I know many have wondered why I am staying away from my family. All I can say is you either understand or you don't. I have had other major surgeries where I tried to recover around my children, including a hysterectomy right before Danica's brain surgery and spinal fusion last year. You cannot keep me down. If I am there and something needs done or one of my children in reality needs me or even thinks they need me I will get out of bed. I will lift something. I will bend over. I can push through any kind of pain even to my detriment to do those things I think must be done. It comes at a high price with abdominal surgeries, yes, but the price here is one we can't pay. Like Danica's recovery, this is a one shot deal. It's one of the biggest blessings and greatest specific answers to prayer that I am here in this beautiful home resting. It is also one of the things that hurts the most. To be away from my husband and children, especially this time of year, is another wound I'm watching and treating. Much like the strict obedience to doctor's orders we exercised for an ENTIRE YEAR which undoubtedly aided to Danica's healing success, we know for sure there is no gray area in the things that will help these bones fuse and make this healing a full reality for my family and I. We did not come this far to turn back or even cut a few corners for momentary relief. This has to work!

Another important component of my healing is also this space and time and quiet. My life has been hyperfocused on Danica and I's health for well over four years now. I need in many ways to sit here at the feet of Jesus in puddles of sunshine remembering who I am in Him. I need to be doing nothing. I need to pray and journal and dream about what I could possibly do with my life if He makes me well. Most of all I plead with Him daily to let me in no way squander the soul clarity He's given in this long journey. This currency is priceless. What would He have me do with such a gift?

Here I am after my surgery with a big thumbs up, something I learned from my brave Dani Jean girl. 21 days. I'm also posting the pictures below Dan took Friday night, at 19 days, of my incisions. Our hope remains!

The armor of light

2011-12-11T13:28:00.001-05:00

“I cannot cause light; the most I can do is try to put myself in the path of its beam.” Annie Dillard

My love affair with "shafts" or "puddles" of light is told over and over in journals since I was a child and even in my blog posts. I've spoken of it many times and perhaps wondered if (in addition to the crushing of my brainstem and spinal cord) I became so much more ill when I moved into the basement of my parent's home because I was buried in a way from the one thing that helped me survive and grow just a little. Since our move in late June I was so often curled up in my room, a place with literally no natural light, holding my head with the soul sapping pressure begging for relief and praying, yes, for a breeze from the outdoors or a spot of sunshine to remind me LIFE is LIGHT.

Since my surgery, for the first time in my life, I have become a night owl. I think it may be the prednisone I am on for recovery, but I am up for hours past what would be my normal bedtime. Because of this and my lack of parental responsibilities while here alone I woke very late this morning with the warmest, brightest beams shining in my room across my bed, my face and my heart. After I remembered where I was and assessed my pain level (much higher today for some reason in the top right hole in my head where the screws were) my thoughts were drawn to my Savior, the light of the world, sent in a time of great darkness and hopelessness. People had been waiting so long for their Messiah. When would He finally arrive? How would He come? Would they know Him when they saw Him? What would salvation really look like?

I understand in many ways how discouraged they had become. Since my pain became so debilitating I completely quit trying to put on the armor of light at all. Frankly, I don't think I could even lift it. Remember the Valley of Vision? It's often in the darkest places the glimmer of light is most visible and most valuable. We HAVE to walk through the darkness to appreciate the light when it comes. It will come. It always comes. He IS the light. He IS life.

"Then Jesus spoke to them saying, 'I am the light of the world. He who follows me shall not walk in darkness, but have the light of life.'" John 8:12

In this Advent season I am missing our nightly family ritual of lighting candles and reading and singing about the hoping and the waiting. I am expectant alone here in this beautiful quiet place God has given me to rest. To really celebrate and put back on the armor of light He has asked me to live in valley of the shadow of great suffering for a very long while. For years He has been gently teaching me darkness is not a place or time in history or a circumstance too heavy to bear, it is THE WAY into His glorious light.

Put on the blanket of truth. Put on the mantle of hope. Put on the armor of light. Cast off all those other things during this season that hinder you from putting yourself in His beam and resting awhile.

"But you are A CHOSEN RACE, A royal PRIESTHOOD, A HOLY NATION, A PEOPLE FOR God's OWN POSSESSION, so that you may proclaim the excellencies of Him who has called you out of darkness INTO HIS MARVELOUS LIGHT." II Peter 2:9

Silly pictures

2011-12-10T17:44:00.001-05:00

I thought I'd share the funny succession of pictures I wrote about the other day. I am missing my girls like crazy tonight and just looking at their sweet faces makes me happy.

Here's the first picture. I'm hopeful at this point. Delaney has her beautiful new dress from my sissy on. Danica is wearing a dress much too big for her and her bangs are in her face. Easy fix, right?

Somehow while Danica was being changed into her gorgeous coordinating dress and getting her hair done Delaney scouted a new strange outfit including a red polo shirt packed away in a summer clothes Rubbermaid. Look how beautiful she is no matter what she is wearing. I'm still wondering where in the world that silver scarf came from though.

And then there is this girl . . . my baby bird who has grown such strong wings the past few weeks. Look at that neck! Remember where she was a year ago? Can you picture her strapped into that storm trooper brace in her wheel chair?

Our hope has never disappointed us once. So much prayer. So much faith in our God no matter what the outcome. Taste and see the Lord is good!

If I only had today, a post for Laney

2011-12-07T13:08:00.001-05:00

This blog, although named for Danica, really has journaled our entire family's heart the past years. I have written several times specifically about my Delaney Jayne and how this life God has chosen for us hurts her perhaps the deepest of us all even though she seems to show it the least. Lately, I have been understanding more and more how I have repeatedly failed to trust God with this precious child in ways that are are easy for me to give Danica or my marriage over to Him. I have had the most control over what I wanted her life to look like and be like early on and as it has slipped away from me I have felt desperate when it comes to my love for her and my inability to really communicate to her how much I want her to be okay and grow strong and true through this stuff.

Last night was her Christmas program. I was trying to direct preparations from here over the phone. Dan sent me a picture by email with Delaney in her new holiday dress from my sister, Rochelle, and Danica wearing an old Christmas dress that is a size 8 hanging in the back of her closet for a hand-me-down someday. It was all falling off her shoulders and her too long bangs that need trimmed were falling in her eyes. So, I called and let him know Danica's new dress from Rochelle was in the closet. It looks similar to Laney's new one. Please put it on her and explain to her she can wear the other one in two or three years when it actually fits . . . oh, and please find a barrette for her hair and try taking another picture for Christmas cards. Delaney looked perfect.

I didn't hear from them for awhile and later I checked my email to find Danica looking like a perfect china doll in her new dress with ringlets and fancy shoes and tights. Horrified, I see Delaney has for some reason changed into a jean skirt, a black long sleeve t-shirt, a red polo shirt and a silver scarf. I'm aghast. I would post the succession of pictures here, but I truly am too embarrased. Although I know many of you from LCCS saw my Laney get up on stage last night and thought for sure, "That poor girl needs a mother."

I have been working on this "montage" for her for months. I usually do one each year for the girls for their birthdays. They both look forward to seeing them and since scrapbooking is a hobby I once loved but fell to the wayside years ago I like to at least see the year summed up in one place. Around Laney's birthday in September is when my health became so bad I could not sit on the computer to type for any long period of time or focus to write or work on any projects. And so this sat here half way done and kept being moved on my "to do" list.

This morning I woke and had my quiet time at the feet of Jesus. I thought of the very frantic nature of my reaction to something like clothing and what that communicates about my heart to my dear daughter. I thought about what it felt like to be nine. I was oh so strong willed and either wearing a home sewn victorian outfit (wishing it was a real Gunne Sax) with a big hat living in a dream world or dressed in all black and reading poetry by candle light trying to reconcile with a very angry God. I was oh so serious and so sure my mother could never understand me or why I needed to wear black that day or light a candle even though we weren't Catholic. I know I wanted to stand out and maybe just begin a little to have my own style or my own voice in the sea of matching Little House on the Prairie dresses we were asked to wear on Sundays.

If you know Delaney you love her. She is outspoken and opinionated and tells the truth in places we are all too civil to do so. She is wildly creative and happiest when doing anything outdoors or with art. She is already the core of who I know she will fully grow into be. I love this about girls who are nine and ten. I want to protect it from mean hearted people who might tell her to be something else, believe something else, become something else. In many ways I want to protect her from me the most because I know she listens through the yelling that has turned into a quiet whisper of late and needs me to notice her and praise her and hug her and be sure of her when no one else can or will. This is what good mothers do. They learn to edit the voice in their head and listen harder to the heart beside them.

This is what I have missed out on in my absences from my girl. I write to her. I tell her the things I wish I could whisper in her ear, but I know she cannot listen to right now. I remember, Laney, what nine is like. It's okay you wore that crazy outfit last night. It's okay to hear the beat of a different drummer. It's okay to pick something different than I would or your friends might.

In all my life the most important gifts God has given me are my dear husband and my girls. He gave to me real live souls and asked me to care for them. If you are with your children today. If you get to pick them up from school or take them to a music lesson or fuss at them to do their homework. If you get to give them a bath and snuggle and read a book or tuck them in and kiss their sweet head. You are blessed. This is a huge amazing gift. Let the other stuff fall away.

"You are more than dust and bones. You are spirit and power and image of God. And you have been given Today." — Shauna Niequist

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Lost and gained

2011-12-06T12:41:00.001-05:00

"I have lost nothing
in my life
that I could not find again
with God."
Corrine De Winter

It's so easy to feed on loss when days and weeks and months have turned into years of giving up everything we are told means so much to focus on just surviving. So many well meaning loved ones have said something pithy through our past years about this being a "season" that will pass for us. They leave on another vacation, or head out to the park to watch their children run and play in the snow or facebook about a special concert or the ballet or a simple shopping trip to the mall to visit Santa. They pick out shiny outfits with matching shoes and decide on Christmas cards and look at their December calendars full of invitations to parties and celebrations and people who are all glistening in the fullness we are supposed to feel this time of year. Real or imagined I see the parts being played out around me like I am watching a perfect winter scene in a snow globe. I want to believe I'll be let back in there soon.

I can assure you this loss is much longer than a season for us. This is our life. Wrapped in strange newspaper recycled with the stories of days of exhaustion and pain and long nights in the hospital and tied with twine borrowed from something useful or given to us in charity our celebration is no less real than yours, but I can promise you it feels different because it has to be.

I can look back over our "holidays" since 2007, and there are very few things that look or feel like I think they should. This year is no exception. My Laney will sing of our Savior tonight on a stage with her class in a special dress my sister chose for her. Someone else will curl her hair and let her use a little lip gloss. Someone else will take her picture, and I will miss it . . . again. Someone else will post on facebook my brave and beautiful girl, and I will be here losing the moment that can't be lived again. Gone.

Last evening Dan brought the girls over to have dinner and to visit. It had been raining hard all day and the pressure in my head was bad. My pain was bad. I had been so lonely for these little hearts that move on without me. I tried to set the table and pour some drinks. I tried to play the part of mom. I wanted a dinner where we sat together and talked about our days. I wanted something to feel even a little bit normal. I was hurting. I felt very strange. The girls were wound up and their laughter and silliness echoed off the high ceilings and hard wood floors. Someone had turned on "The Fresh Beat Band" on the big screen in surround sound. I slipped away to the bathroom. I knew it was too soon to try this. I was sweating all over and stripped all my clothes off and sat in the bathroom suddenly freezing. My face looking back at me in the mirror ashen white. I needed to pass out. I could hear the girls chasing one another. I worried if Danica would slip on the hardwood. I could hear Marina saying something about a groovy smoothie. Breathe in. Breath out. I prayed. I called for Dan to get the phone and bring it to me. How would 911 know how to find me? I had no idea where I was really. My sweet husband called my mom. He knew the girls had to get out of there, and he knew I couldn't be alone. He can't offer me any real care or concern. This is often lost in our lives now. We move forward like soldiers. Emotion is just a waste of time and energy we cannot afford. The next thing comes. We love so fiercely we don't need to even say it. The fact we are still here doing this is the proof.

Danica brings me in her princess nightlight and says she wants me to keep it in case I'm afraid. This is a huge sacrifice for her sweet heart. Danica doesn't want to leave me. She is crying. She is not afraid of the gaping cut on my back and neck. She doesn't wince to see the ugly that might give me the best chance to be healed. She walked this road. Delaney needs to leave as soon as she can. She can't watch this happen again. She wants to remember her mommy with beautiful suits, high heels and a Louis Vuitton purse and $500 watch. She wants to remember the mom who had professional decorated cookies made special for each friend in her Montessori and volunteered whenever she could and who took her to Whole Foods for our dinner salad and a fresh piece of fish after work most nights. She wants to remember the mommy who ordered a Venti White Mocha every morning in the Starbucks drive thru while singing with the radio at the top of our lungs because life was good. It was really good. I feel hideous to her now. Sitting on the toilet with no color in my face, glasses, a tank top showing the huge PICC line bruise on my arm and legs that haven't been shaved for two weeks, I know she can't look. She calls, "I love you mommy."

My mom shows up, and I crawl in bed and cry. She rubs my back. It hurts to be touched, but I still need my mommy. We cuddle up and watch "White Christmas". I must have moved my position over one hundred times. I can't get comfortable. We laugh at the same parts we always have since I was a little girl. Wallace and Davis doing the sister act comforts me. I fade in and out from the drugs. We ate chex for a bedtime snack in red cups with plastic spoons. Corn chex always a staple in our house since I was young. A spoon of white sugar on top. My mom tucked me in.

This morning my friend Melinda came to bring me a bagel and visit. You know her by now. The dear mom of Danica's friend, Brooke, who also has Chiari. The first friend who called when she found out about my surgery and said, "How can I help?" They have been through more loss than I can even speak of here. They recently had to move several hours away for her husband to find work, but she came here with her three children to stay with her parents and watch Danica last Friday, yesterday and tomorrow. This morning we sat across from one another soul to soul and there were no pretenses. We have been taken as low as we can as mothers, as wives, as women. We have given up everything to grasp the one thing we would give our very lives for. We can speak freely of bill collectors and repo men and shame and in the same breath praise our good God for the provision of manna day by day by day. Don't store it up. Give it away. It will be there again tomorrow. It's enough. I will give you the shirt off my back. I will give you my last drop of energy. I will love your daughter as my own.

Since Danica was born I would look into her big brown eyes and say, "I am you and you are me." Today I looked into my friend's eyes full of tears and felt the very same. Strip it all away and we are just the same. There is nothing we can lose that cannot be found in our God. He is our everything. "And what do you benefit if you gain the whole world but lose your own soul? Is anything worth more than your soul?" Matthew 16:26

Humbled and blessed because all this loss is really a beautiful trade off for the soul work He's doing here. Nothing is worth more. Nothing.

(This beautiful song, God of my Everything, sung by Bebo Norman is on repeat today.)

Do you see?

2011-12-02T11:56:00.001-05:00

I'm sitting here in bed propped on many pillows and covered with my favorite "story" quilt from home. I'm looking at the sun glistening off the peaceful lake right outside the floor to ceiling doors and windows to the left of where I rest. I watch the dancing rays on the simple colors and patterns of the soft rug covering the hardwood floor. Classic and simple furnishings comfort me and are a present wrapped in the way beautiful space has always been a gift to me. There are pictures of people I do not know smiling at me. They have a summer life here, and because they are part of this big household of faith they opened their home to me to heal. I have wanted this. I have prayed for this. I have desperately needed this time and place more than I ever could have imagined. I see.

If you have been reading this blog from the beginning you know my theology has often brought me to ask many questions to a God I believed in and trusted but still held at bay when it came to His providence and how it worked in tandem with my sin. I especially questioned Him when it came to the suffering of Danica and my family. He recently brought me to this passage from John 9:1-3.

As he walked along, he saw a man blind from birth. His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?" Jesus answered, "Neither this man nor his parents sinned; he was born blind so that God's works might be revealed in him.

Four years ago Danica was born through months of intense physical suffering and great loss on many levels. The verse I would cling to was from Job 42:5, "I have heard of You by the hearing of the ear; but now my eye sees You."

I have literally a hundred amazing stories to tell about my trip to Maryland and surgery and healing. They all speak directly of a God who is always in the details and thrives in showing His Grace through people. The morning of my surgery my sweet sister-in-law Amy took me to the hospital to get registered and get my PICC line placed. I did not feel so much nervousness as I did really dreading the process that leads up to actually being wheeled into the room and getting to the real business of surgery. If you've been through many surgeries you know that everyone comes in and meets you and chats about certain history and reminds you of the risks and complications that could arise and then has you sign a bunch of forms. There were two people during this process that blew me away. First I had to go over and register and show my id and insurance card, etc. When anyone finds out you are a patient of Dr. Henderson it seems there is a special kind of reverance and care surrounding all the dealings moving forward. This sweet woman saw a countanance on my face that she instantly recognized as being a "believer." She said, "I am already praising God with you for what will happen in that operating room today and during your healing." I see.

When Dr. Henderson came in to speak with us he had his classic blue blazer on and held my hand tightly as he prayed over Dan and I. He asked for God's guidance of each movement of his hands and each decision he would make during the surgery and then he asked specifically for my healing so I would further be able to glorify God by doing His will in His kingdom.

Stop. Read it over again. This man who would cut open my head and neck and painstakingly move around in my brain stem and spinal cord had just prayed the desire of my heart. All I have longed for is to be doing God's will and giving Him glory. I know these heavy burdens are not given lightly. With them come great responsibility to bear them into something beautiful and eternal. This is why Dr. Henderson does this work. I cannot be healed and go back into a life anything like what it once was. I've SEEN and have to tell about it.

When I came out of surgery and began to get my bearing in the recovery room all I could say over and over was, "I CAN SEE." The black floaters I had suffered from for years, particularly in my right eye, but most severely the last months as the pressure in my head had worsened were completely gone. As I type this now I have no obstruction of my vision at all. Although I am in considerable pain from the rib harvesting and my large head and neck incision I do not have the paralyzing vice grip in the back of my head. I do have quite a bit of nerve "damage" from the screws put in my upper skull to hold it in place suring surgery. I have felt like my head is numb. I know much of these post surgery pains will take patient healing and rest to make it a true success.

I am praying that all the faith being made sight will unfold in your life and mine so the power of God can and will be seen in us.

Thank you for all the continued love and prayers for us. Our family will remain separated for some time so I can best heal. Please pray for Dan as he is back to work and so very tired. He is out of paid time off so the flexibility to care for the girls are be here with me is just not there. Pray for the tender souls of the girls missing me to follow through on many holiday traditions but also being blessed by having the influence and love of others share their own while I am unable. Please pray for my parents. They have carried such a load and my mom is very sick today. A special thanks to my friend, Melinda, who travelled back into town with dear Brooke to watch Danica for a few days. I LOVE knowing they are together.

I will be writing more and more as I leave the haze of my meds. I am not controlling pain well right now, so I plan to work on that over the weekend. May you have many moments of peace as we follow the star to Bethlehem. Keep your eyes open and you will SEE.

Rough Night...Better Morning (Another Angie Post)

2011-11-23T08:56:00.001-05:00

Monica had a very rough night. She was on heavy pain medication, so she was in and out of consciousness a lot. Dan describes it as haunting, and it's a good description.

Whenever she was awake she described the pain as excruciating. In the middle of the night, she began experiencing numbness in her right arm and leg and a burning sensation in her heels, along with a lot of pressure in her skull. Miserable is an understatement.

This morning, Dr. H came in and said the numbness was symptomatic of spinal fluid build-up, so he performed a lumbar puncture to relieve her pressure. He removed 26 cc's of fluid. The norm is 15. She is feeling much better now that the pressure has been relieved, but she is concerned it could build up again and that they may have to put a shunt in. Dr. H said that barometric pressure can also impact fluid build-up, and Monica is especially sensitive to changes in weather, so that may have been a factor in the pressure.

When I came in the room after Dr. H performed the puncture, he looked over at me and said, "She is such a brave woman." It's at that point I fell apart.

She is.

So very brave.

This morning in pre-dawn darkness I read these words to her:

"For the mountains may depart and the hills be removed,
but my steadfast love shall not depart from you,
and my covenant of peace shall not be removed."
says the LORD, who has compassion on you.
(Isaiah 54:10)

Our Almighty Father, Creator has given her breath, our Savior has brought her new life, and our Holy Spirit is ministering comfort to her. I can see her peacefulness in the midst of struggle. That is evidence of your prayers interceding for her. She is so grateful.

Dan is here now, and Monica is eating her breakfast and drinking coffee and seems more chipper than she did at all yesterday. I love sitting here watching Dan and Monica interact. It is beautiful.

She is so loved.

Y'all are loving her well, too.

Would you continue to pray? She is desperately asking that this fluid build-up would not happen again. It is scary and overwhelming, but she is resting in the steadfast love of the Lord.

Thank you.

Strength for Today... A Post By Her Friend, Angie

2011-11-22T16:57:00.001-05:00

Monica had supper delivered to her, and if one can be jealous of hospital food, I might have been a bit jealous of her chicken and rice. She chewed bravely even though it was so much work.

As I sat there and watched her, I couldn't help but think of one of her favorite quotes by Eleanor Roosevelt: "Do the thing you think you cannot do." She is so courageous, doing what she must even though it is hard and painful.

I have sat by her bedside for several hours now and watched her drift in and out of sleep, listened to monitors beep while the IV nonsense drives her crazy, and chatted a bit with her during her more alert moments. Always she tells of God's great faithfulness to her and her family. She tells of how Dr. Henderson has cared for her and quotes to me his prayer before surgery. She rejoices in her "floaties" in her vision disappearing. She whispers of Dan's care for her and of speaking with her girls earlier.

At one point, she laughed. "Did you ever imagine how many surgeries we'd have between the two of us?" It's almost comical. Then we talk of how we really must be kindred souls. But it is more than that. I'm convinced God knew we needed each other to fully understand all the weight each other bears.

She bears her trials well, and I marvel at her resilience. I am so blessed to sit by her side and learn from her even here where the walls seems to close in on you and the light is so harsh and fluorescent.

The stronger meds from surgery have worn off, and she is in a lot of pain today. She struggles to find a comfortable position, but she barely mentions it, only asks for help to sit up or gritting her teeth as she pushes the button to pump more medicine in.

Dan is staying at the hotel tonight to get some much needed rest. It makes me think of Jacob in the Bible, how he worked seven years for Rachel and yet it seemed a short time because his love was so great. They have such a long week ahead of them, and he will bear much of the weight of care. Only his love for her is so deep, I know it is a weight he is willing to bear for her.

She made some progress on her supper and received a visit from another patient here who has encouraged her that it does get better. The nurse came in and got Monica up, and her pain has gotten more intense, so they've given her some valium, and she is resting comfortably now. I've read some Facebook messages and texts to her, and she is overwhelmed by all of your love and prayers and support.

We are curling up for the night, and it is quiet, or as quiet as a hospital can be with machines whirring and intercoms buzzing and loudspeakers blaring in the hallway. I am so very thankful to be here, to pray over her and ask God for strength for today and bright hope for tomorrow. And I am so very thankful to hear her speak of all of you... your prayers and support and encouragement are bolstering her spirit.

Maryland, My Maryland...A Dan Post

2011-11-22T10:11:00.001-05:00

Monica and I are comforted both in the doctor she has carefully selected and the fact that the surgery is in Maryland. Though the faces in this small hospital are unfamiliar, the surrounding environment is where I spent a few years attending the University of Maryland here at College Park and subsequent employment in the region. We met in nearby Sterling, VA, residing in the area and also rented a home in Gaithersburg, MD, where Danica was born. Though we prefer the more relaxed pace of Northeast Ohio, we still are connected to this area. I think it aids in recovery if one feels comfortable in their surroundings.

Monica is doing well post-op. This morning Dr. Henderson commented the surgery went perfect and seemed very pleased with her progress. She just finished breakfast and could still handle an Asiago bagel from Panera. With the C1/C2 fusion and decompression, the extreme pressure in her head and black "floaties" in her vision disappeared completely. The pain from harvesting a rib is very significant but she is thankful that this new pain is in a new place. Similar to Danica, she is wearing a Vista neck collar which covers the small incision in the back of her neck. She has a small but private room here in Lanham and the recovery wing seems to be mostly empty during this Thanksgiving holiday. Our short term goals are to get all these wires and tubes removed and get back to our hotel by Thursday.

There are key events in your life that help define who you are. Monica surviving multiple surgeries while still always thinking of her friends and family speaks volumes for her loving character. Finding myself alone at times in the waiting room last night made me realize how important our relationship is. Amy(sister in-law) and I were not getting any updates during the surgery and my mind began to wonder a little while reading the Steve Jobs biography. I realized that my wife and I are partners in this world and we are there for each other in good times and in bad times. Specifically, she needed me and depended on me to be there and if I ever questioned my role in life or where I was supposed to be, nothing cemented the fact that I was exactly where I was supposed to be. It was a good feeling.

Maryland seems to be the place where we happen to find ourselves during the most strenous times of our lives. I vividly recall sitting bedside next to my mom in a Southern Maryland hospital watching her one lung barely move due to cancer. This morning while Monica slept I sat bedside watching her lungs move up and down at long intervals due to her deep medically induced slumber. In Rockville we endured several months of unbearable pain during Monica's pregnancy with Danica. We do not think it mere coincidence these events transpired in our "hometown" of Maryland. We believe this is part of a plan to help us cope with our reality. Monica still has two rough days ahead of her as the pain begins to reveal itself but we are comforted in our surroundings and in our hearts. Our past experiences prepared us for this time of suffering. Monica's extremely loving and caring friends will carry us on their shoulders. "We can do all things through Christ who strengthens us."

Things planned long ago

2011-11-19T21:35:00.002-05:00

"O Lord, you are my God;
I will exalt you and praise your name,
for in perfect faithfulness you have done marvelous things,
things planned long ago." Isaiah 25:1

Tonight I am broken. I cannot breathe or move without the strength and grace of my God. The day seemed frantic and without the togetherness I had imagined but just for a few minutes tonight we sat in the dark as a family with the twinkling tree lights and Dan, who had not showed much emotion today but pushed through what needed to be done, went and got his ipod and played this song sung by Selah for us as a family. Then we listened to it again. " . . .You always give the healing and grace our hearts always hunger for . . .Here in our weakness you find us falling before Your throne . . .You are the One that we praise. You are the One we adore."

Each of us are feeling much different emotions but all have the same thread. Me, the momma bird, leaving my baby bird for the longest I ever have. I snuggled her in her little nest tonight and sniffed her hair and kissed her nose and the ache was more than any physical pain I could ever feel. I whispered in her ear, "I am you and you are me." Me, leaving my Laney who said matter of factly after I tucked her in and prayed with her and sobbed, "Mom, I'm used to this. It's my life." Me, looking into my husband's eyes and seeing how weary and frightened he is beneath the brave, strong and loving heart. We hugged. He told me he is making a commitment to me to be "up" even when he feels down because he knows I need that from him to get well.

The PERFECT faithfulness of God shown in marvelous ways this week reminds us who wrote this story. The next weeks and months are not blank pages. These things were all planned long ago. Even your love to us was decided much before He laid it on your heart to pray or give. Tonight we settle into the arms of a God who is ALL. We praise Him. We trust Him. Our hope does not disappoint.

(Thank you so much for praying for us all and especially for safety for our travel to Maryland and for my surgery Monday. I will be at the Doctors Community Hospital at 9am to get a PICC line, 11am I will go back for surgery prep and 1pm is the planned surgery start. He has the operating room scheduled until 6:40pm. Dan or my sister-in-law, Amy, will be updating here and on facebook as they can. I have a stack of thank yous here I desperately want to write and unanswered emails and messages and even un acknowledged great love. To each of you I say, your words and prayers and blessings are needed and appreciated and give comfort and encouragement. We love you.)

Nuts and bolts in layman's terms

2011-11-16T11:40:00.001-05:00

I'm trying to keep my rollercoaster of emotions private and not open a floodgate of pain and fear. I know many of you have been checking here waiting for a "nuts and bolts" explanation of my surgery happening Monday. I often speak in neurosurgery lingo now. This has been our world for so long. It just all makes sense to us. I understand it's mostly foreign to you. If you have emailed or facebooked me I am sorry to not reply. I have not had the strength to build my own "PR" campaign. And by "PR" I mean prayer and public relations. Smile. So, please pray and ask someone else to pray too. There are so many needs, and I am too broken and tired to say them out loud. God knows, and He will be faithful.

There are several other ladies who had or are having a similar surgery to mine with Dr. Henderson this week, and the explanation of one of their friends describing the condition and process was so good I am going to borrow from it.

I have been suffering for over a decade and have finally been diagnosed with Ehlers Danlos Syndrome, Chiari malformation, basilar invagination, cranio-cervical instability, a syrinx in my spinal cord and probable tethered spinal cord. The past months I have struggled to get out of bed. The pressure in my head due to low lying cerebellar tonsils has caused painful and debilitating neurological symptoms and increased wide spread pain.

The surgery will be complex and and take about 4 hours.  The hope is it will help to slow or stop the progression of symptoms from some of these conditions and improve my quality of life overall. I will have a suboccipital decompression, reduction of basilar invagination and cranio cervical fusion from the occiput to at least the c-2 using ribs which will be harvested from my back during the surgery.

In layman terms, the lower portion of the base of the skull will be cut away and the outer tissue removed so the cerebellar tonsils (brain) will now have room. A titanium plate will be put over the skull to cover what what was removed. Then titanium rods will be placed one to the left and one to the right of the vertebrae from the occipital plate to at least the c-2. Rib bone will be removed from behind the shoulder blade and will be shaped to fit between the rods to fuse the area to vertebrae permanently to give stability in the neck to hold up the head. (The instability is caused by EDS.)

Yes, I will have the back of my head shaved. Yes, I will have a long incision and scar on the back of my head and neck. I will wear a more restrictive collar/brace coming out of surgery and then hopefully be downgraded to my Aspen after while. Yes, having the ribs harvested will be one of the most painful parts of this surgery.  Yes, there are many risks and complications that can arise.  We have walked this road with our precious Danica. Her light leads my way down this dark road.

Dan and I will leave for Maryland on Sunday morning. We plan to stop in Hagerstown to get a hug from my sister Rochelle and her husband and have lunch. Sunday evening we will settle into a hotel just a few miles from Doctors Community Hospital in Lanham, MD, where my surgery will take place the next day, Monday, November 21st. Right now I am scheduled to be there at 11 am and for my surgery to begin at 1 pm.  Please pray for timing and circumstances to work towards this end. I get very low blood sugar and cannot imagine not having anything at all to eat or drink from midnight until 1 pm the next day. I know my anxiety will build and my strength will be all but gone by afternoon.

We can speculate about recovery and time in Maryland before being cleared to come home, but we know these things are all fluid and so I am not holding expectations but leaving all that to God. The soonest I would be allowed to travel is Tuesday, November 29th. I will need to return to Maryland for a 6 week followup.

Please pray for us these next few days left together as a family. Please pray for my Dan and Delaney and Danica and their individual fears about what is about to happen. Please pray for my surgeon to have health and strength and some good rest over the weekend leading up to the surgery. Please pray for my parents as my dad is still recovering from his lower spinal fusion and they will be responsible for the girls while we are away Please pray for our financial needs. We have paid a small part of the requested down payment thanks to donations from Grace Designs Photography's fundraiser in Septemeber, a donation from the dear parents of a childhood friend and my parent's help. My sister-in-law who works for Marriott has gotten us a very good rate for our at least eight night stay in the hotel there. I will most likely be released from the hospital on Thanksgiving Day or Friday and then stay in the hotel until I can see the surgeon again early the next week.

Lastly, Please pray for my physical suffering and most of all for my heart.

I read this quote by John Bunyan last night. It speaks to fusion and salvation. It comforts me. Believing that sometimes the deepest wounds create the sweetest healing bearing the most fruit.

"Conversion is not the smooth, easy-going process some men seem to think. It is wounding work, of course, this breaking of hearts, but without wounding, there is no saving . . . Where there is grafting there is a cutting, the scion must be let in with a wound; to stick it onto the outside or tie it on with a string would be of no use. Heart must be set to heart and back to back, or there will be no sap from root to branch, and this I say, must be done by a wound."

In layman's terms, this hurts in the deepest place something can, but it also has the hope of saving my life. I'm all in.

Take heart, my friend

2011-11-15T11:45:00.001-05:00

“You may not remember the time you let me go first.
Or the time you dropped back to tell me it wasn't that far to go.
Or the time you waited at the crossroads for me to catch up.
You may not remember any of those, but I do and this is what I have to say to you:

Today, no matter what it takes,
we ride home together.”
Brian Andreas, Story People

My dear friend, Angie, wrote this about the burdens we are carrying on her blog yesterday. For my birthday she sent me a "mix tape" for suffering, something she knows more about than almost anyone I love. "Take heart my friend" sung by Fernando Ortega is the first track. Tonight she told me she planning to come visit me in the hospital next week.

We'll ride home together. No matter matter what.

Getting inside the miracle

2011-11-12T07:02:00.001-05:00

Sometimes being a writer is painful. Words are constantly writing themselves in your head and your heart, and there is no way to capture them all in their time and place. Often when you come back and try to revisit they come out jumbled and wrong. I have had a flood of important things to say, but I can't. Quite simply, I cannot hold this old laptop on my lap. It is burning my legs and shutting down every fifteen minutes because it overheats. My fingers cannot hover long over the keyboard before they cramp and shooting pains move up my wrists and arms. I grieve these lost words because they continue to tell a story.

Yesterday was supposed to be a really fun evening for our family. We don't have those often, and I put more energy than I really had into preparing for it. We have a tradition in our little family to put up our Christmas tree on Thanksgiving Day. We play our Christmas playlist, and the kids lovingly unwrap each precious ornament, and we talk about where it came from and what year we first got it. When we are all done "decking the halls" we sit together with just the twinkling lights, and we begin Advent readings and singing songs and the thrill of watching and waiting. I will be in the hospital for Thanksgiving. Dan and I will be in another state far away from our dear girls. It was important for me to preserve this tradition. Knowing I would not be able to participate when I get back we had chosen last night to celebrate.

Snyder law says what can happen will happen. I pushed myself all day to the point I could barely hold my head up. Danica has been sick with fever and a strange rash the past few days and really wanted to crawl in bed, but her child excitement oozed as she peeked through the clear Rubbermaid at all the baubles. Even Delaney who seems jaded and sad more and more as my surgery approaches had so much joy in participating. Dan got home and the fiasco began. Our prelit tree that is three years old decided to only light up in certain sections. The minutes of trying to replace bulbs and fuses and everything under the sun unravelled into tears and sadness. My tenacious husband, so tired from work all day and our nights awake with Danica sick, would not give up. He eventually took Delaney to the Hardware for something called the "Zapper". They came home so hopeful it work work, but no life could be breathed into the lights. Danica passed out with disappointment and fatigue. I collapsed into bed. Delaney hid in her room with tears and my husband stayed out there trying and trying and trying.

Fast forward a few hours and Danica begins throwing up in my bed. I look to the heavens. I don't ask "Why?" any more. I wonder if this is really growth in faith or just resignation. I do beg for Grace. I ask for things to just get a little easier, if not for me, please Lord, for my family who is so tired and weak and ready for some normal, some peace and some joy.

I cannot sleep, and I keep thinking about miracles. I think about how flippant we are with the word and how blessed I am to know what it really means. I touch Danica's hot forehead and watch her restless snoozing. I think of all the times Jesus healed bodies to get to the hearts. I try to pray and get close enough to touch the hem of His garment.

One of my beloved poets, Luci Shaw, writes about getting to the root of a miracle. This morning I sneak out of bed to find her words.

No, he is too quick. We never
catch him at it. He is there
sooner than our thought or prayer.
Searching backward, we cannot discover
how, or get inside the miracle.

Even if it were here and now
how would be describe the just-born trees
swimming into place at their green
creation, flowering upward in the air
with all their thin twigs qivering
in the gusts of grace? Or the great
white whales fluking through crystalline seas like recently inflated
balloons? Who could time the beat
of the man's heart as the womans comes close enough to fill
his newly hollow side? Who will diagram
the gynecology of the Incarnation,
the trigonometry of Trinity?
Or chemically analyze wine from a well?
Or see inside joints as they loosen,
and whole limbs, and lives? Will anyone
stand beside the moving stone? And plot
the bright trajectory of Ascension?
And explain the tongues of fire
telling both heat and light?

Enough. Refrain. Observe.
a finished work. Think --
today: another miracle: the feathered
arrows of my faith may link
God's bow and target.

Miracles are always about the heart. Once again I sit at the stable in Bethlehem. I sit at the foot of the cross. It is finished. And so my feeble heart still cries about being forsaken and letting this cup pass, but I give my life and my family over to the sure thing God is doing.

Team (Mo)nica

2011-11-02T09:25:00.001-04:00

I have prayed about sharing the details of my own diagnoses and treatment with everyone in this forum. There are all kinds of privacy regulations that rightly try to protect our personal medical information. This blog flies in the face of the very good reasons behind those policies. I have not shared our journey this far without considering the risks of being so vulnerable with my daughter's information, our family struggles emotionally, spiritually and financially and now my own life altering health issues. When Danica's little head became crooked and months later was diagnosed with Chiari, a condition I had never even heard of before, it was the internet that connected me to research but most importantly people who had walked in similar places and were willing to help me fight for my daughter. Since I began documenting here so many have googled "Chiari" or "Atlas Assimilation" and through the wonders of search engines and God's providence they have landed here. If you have survived something like this you realize how unique each story is and how much it matters if only to the one next person who can be helped or given some hope.

Many of you have written asking in almost disbelief about my surgery. It is amazing to think I will be having a suboccipital brain decompression, reduction of basilar invagination and cranio cervical fusion in less than three weeks. I wish I could explain all the diagnoses I received, but I cannot really. I joke I could practically be a neurosurgeon at this point, but the truth is the combination of conditions I have is a messy melting pot spelling eventual disaster. For some reason only known to God my symptoms have snowballed the past months into some very scary times. Thankfully, I had all this knowledge from Danica's diagnoses and treatment and a lot of gut instinct and my friend, Pam, a woman who has a road right next to mine who kept whispering to me to find help.

The emotions of our family now and the raw reality of what we are racing into is for another time and post. I have not fully let myself go there quite yet, because I am laying here in bed with calendars and paperwork and lists and trying to take care of details that no one else can or would even know to. In the back of my mind I worry I don't have advance directives and a living will and wonder how anyone would know what song I want at my funeral if I don't tell them.

As I type this my shoulder pops in and out of joint. I feel so much pressure from the back of my skull into my head I want it to explode just to stop the pain for a minute. If I move my neck the bones literally make a crunching sound. This is all stemming from Ehlers-Danlos Syndrome, a genetic connective tissue disorder. For over ten years I have been told I had severe fibromyalgia. In my heart I always knew something else was wrong. It was not just widespread pain in flares. It was like my body was imploding some days. I would tell Dan over and over, "There is something REALLY wrong with me." EDS relates to almost all my other issues because our connective tissue holds EVERYTHING in place. When it's loosey goosey things get dicey especially around your brain and spinal cord.

This is a picture of my cervical spine in a lateral position. Looks pretty good right? The C1 is covering the C2 55mm.

Now I'm going to show you my cervical spine when rotated to the side. YIKES. In the most extreme turn my C2 is only covered 13mm. You can imagine what is happening to my brainstem any time I move my neck.

I do not plan to post my MRIs here, but needless to say, there are quite a few neurological results up and down my spine because of the compression of my brain stem and spinal cord. I have a syrinx in my lumbar spine. I also have imaging, symptoms and other tests that confirm I have a tethered spinal cord. Surgery for this would be next spring sometime once I heal and can access how many symptoms remain after fixing this critical issue. I also have Chiari in certain positions and will have my brain decompressed. Because my skull and cervical bones are moving around in flexion and extension and rotation an entirely new picture of my cerebellar tonsils, brain stem and spinal cord emerge. These are scans that most neurosurgeons would never order but paint the real picture. People have also been asking why I need to go to a surgeon in Maryland. There are really only a few surgeons in the Unites States that will agree to decompress and fuse EDS patients. God most decidedly led me to Dr. Henderson. He does not participate with insurance. Thankfully the hospital is considered out of state, in network, so many of the services required will be covered. The most expensive part of the surgery, the surgeon, will not. He is asking for a large down payment to perform the surgery and an agreement for monthly payments. We are moving forward. God will make a way.

Dan recycled the Team Danica shirt my friend, Kim, had made last summer to get a little laugh out of me. Thank you for sticking with us and praying to the God who is able to do exceeding, abundantly above all we could ask or think.

Breaking Through

2011-10-31T10:06:00.001-04:00

I'm sorry it took me so long to finally get this finished. This is really only a snippet of the hundreds of photos that make up the past years and tell our story. Danica LOVES this Toby Mac song and especially dancing around while singing it in her sweet voice. I dreamed and dreamed of having a big celebration party when we reached this point in healing. It turns out God has a little bit further for our family to go. We still believe what sometimes seem like curses are truly God's way of blessing us more than we could have imagined and pointing us continually to the story of REDEMPTION and forever healing in His Son.

"When you realize that the story of your life could be told a thousand different ways, that you could tell it over and over as a tragedy, but you choose to call it epic, that’s when you start to learn what celebration is. When you see in front of you is so far outside of what you dreamed, but you have the belief, the boldness, the courage to call it beautiful instead of calling it wrong, that’s celebration. When you can invest yourself deeply and unremittingly in the life that surrounds you instead of declaring yourself out of the game once and for all, because what’s happened to you is too bad, too deep, too ugly for anyone to expect you to move on from, that’s that good, rich place. That’s the place where the things that looked for all intents and purposes like curses start to stand up and shimmer and dance, and you realize with a gasp that they may have been blessings all along. Or maybe not. Maybe they were curses, in fact, but the force of your belief and your hope and your desperate love for life as it is actually unfolding, has brought a blessing from a curse, like water from a stone, like life from a tomb, like the actual story of God over and over. I would never try to tell you that every bad thing is a really good thing, just waiting to be gazed at with pretty new eyes, just waiting to be shined up and- ta-da!........there is something just past the heartbreak, just past the curse, just past the despair, and that thing is beautiful. You don’t want it to be beautiful, at first. You want to stay in the pain and blackness because it feels familiar, and because you’re not done feeling victimized and smashed up. But one day you’ll wake up surprised and humbled staring at something you thought for sure was a curse and has revealed itself to be a blessing-a beautiful, delicate blessing." Shauna Niequist, Cold Tangerines

My suboccipital decompression, reduction of basilar invagination and cranio cervical fusion will be performed by Dr. Fraser Henderson Monday, November 21st, at Doctor's Community Hospital in Lanham, Maryland. Our hope remains!

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Acceptance-with-Joy

2011-10-27T16:38:00.006-04:00

Faithful friends, a year ago I wrote this about being afraid and looking for life in a desert place. Please link to read it again. I humbly lay here today and give God all glory for the miracle in Danica's life and the change in our hearts as we have surrendered to His loving plan. Today our girl is without a brace or collar. Her fusion scan on Tuesday in Cincinnati showed better results a year later than anyone in her medical team could have hoped for. I have some beautiful photos I am putting to music and will post them here in a few days. These months and years have surely not been wasted time. Each day has been redeemed by Him. Won't you praise Him with us now?

I am not quite ready to post in depth about my diagnosis and proposed treatment. I am still processing much of it and am truly in so much pain and mental confusion and fatigue that I have trouble writing. Simply, I need surgery similar to what Danica had a year ago. I need it soon (as in the next few weeks) in Maryland. With no pride but only amazement I can tell you there is no more theater of what-ifs. Truly God has been preparing me for this for a long time. Along with my friend "Much-Afraid" I can say about this journey:

In all that great desert, there was not a single green thing growing, neither tree nor flower nor plant save here and there a patch of straggly gray cacti.

On the last morning {Much-Afraid} was walking near the tents and huts of the desert dwellers, when in a lonely corner behind a wall she came upon a little golden-yellow flower, growing all alone. An old pipe was connected with a water tank. In the pipe was one tiny hole through which came an occasional drop of water. Where the drops fell one by one, there grew the little golden flower, though where the seed had come from, Much-Afraid could not imagine, for there were no birds anywhere and no other growing things.

She stopped over the lonely, lovely little golden face, lifted up so hopefully and so bravely to the feeble drip, and cried out softly, “What is your name, little flower, for I never saw one like you before.”

The tiny plant answered at once in a tone as golden as itself, “Behold me! My name is Acceptance-with-Joy!“

Much-Afraid thought of the things which she had seen… Somehow the answer of the little golden flower which grew all alone in the waste of the desert stole into her heart and echoed there faintly and sweetly, filling her with comfort. She said to herself, “He (the Shepherd) has brought me here when I did not want to come, for His own purpose. I, too, will look up into His face and say, ‘Behold me! I am your little handmaiden, Acceptance-with-Joy.’” -Hannah Hurnard

Found words

2011-09-29T18:33:00.010-04:00

When you've written in journals most of your life you find things scratched almost everywhere. I was looking in some Rubbermaid tubs full of pictures and scrapbooks, and I found a little wire bound journal I was keeping in early 2001. Here's an entry from March 29th.

It's a rainy Thursday. Days like this I hurt the most for no real reason. I'm sitting on a heating pad. Today I met Dan at the mall (Dulles Town Center before they even had a Nordstrom) for lunch. When I saw him across the food court my heart skipped two beats. I am amazed at the way our love grows every day and endures through these hard times and strengthens because of them. . . (I go on to say more mushy stuff about Dan.)

I am seeing a fibromyalgia specialist in Bethesda on Tuesday. Her office suggested I try to write down all my symptoms and try to remember a timeline.

6-8 months ago I began to have soreness around my neck and shoulders and could not sleep. I felt like I had the flu. I was eventually diagnosed with mono. In the mornings especially the shoulder pain was unbearable. I began to miss work and stay in bed whenever I could.

Almost 2 months ago we got married. The day before our wedding I was supposed to go to a spa day. I could not lift my head or get out of bed. I had a fever during our wedding weekend and felt horrible. Since then my symptoms have ruled my life. I have missed so much work. My general practitioner did lots of blood work. It came back normal. He speculated about fibro and put me on Vioxx and Elavil and referred me to a rheumatologist. The appointment was weeks out. My symptoms began to worsen. When sitting or driving for more than 10 minutes I would experience sharp burning pain up butt, low back and thighs. When I wake in the morning my legs are stiff and sore. I feel like my heels are bruised. My feet and hands go numb. If I am putting pressure on my feet, like standing in the bathroom to get ready in the morning, my feet literally turn purplish blue. My feet are always cold. My arm and hand pain is constant. I feel like I have something pinching the nerves in my neck. It radiates pain into my skull. I have visible lumps of sore muscle in my neck, low back and hips.

Night is my worst enemy. I am so tired all the time but sleep eludes me. I wake 6-8 times a night. I can't get comfortable and even lifting the covers hurts my arms. I also have been doing very odd things like dropping things, running into things and tripping. I forget things mid sentence, can't think of words and am easily confused.

When I finally saw the rheumatologist she was not very sympathetic, and I feel she didn't hear me. She said, "Oh, you're so young, you'll be fine." She prescribed Celebrex and Flexeril. I have seen no improvement. My PCP called me in Trazadone and Valium. Those two drugs have helped me sleep a little better. I am only waking 2-3 times a night now--usually because I roll onto a shoulder and yelp out in pain. My jaw and other joints seem to pop and click so I hold myself in painful positions without even realizing it. I am crying now. I am 25 and depressed and so scared.

For over a decade I have suffered greatly. My endometriosis pain on top of the fibromyalgia created in me a survival mode. I lived with peaks of adrenaline and achievement and horrible lows of fatigue and failure. Only my husband and perhaps my sister, Rochelle, have really understood how I came over time to almost give in to the fact this was going to be my life.

I now believe God has been working through Danica's story to bring me to a real understanding of my complicated condition. Praise God for my PCP who worked to get my brain MRI at Mercy scheduled Thursday. A week from today I will have an upright flexion and extension MRI of my cervical, thoracic and lumbar spine in Lorain. These scans will then go with me to Dr. Henderson in Maryland. He will most likely do a rotational CT scan while I am there but having these done in network is a great blessing.

Yesterday we celebrated Danica's 4th birthday although today is her actual day. I took this picture of her this morning. Her long, beautiful white neck is straight and getting stronger. God has been so good to protect her and heal her and allow our family to live and love through the past year. I was snuggling with her as she fell asleep last night and thinking about how Danica's dependence on me and my suffering for her has made us connected in a way that is almost impossible to explain. It brought me to my own relationship with my God. Oh how I have needed Him these years.

After a quote posted on a friend's facebook page from Elizabeth Prentiss I asked my dad if he could find me any of her books and specifically the biography of her life by Sharon James, 'More Love To Thee'. It is hardcover and very difficult for me to hold for long because my hands hurt badly, but I have been picking it up on and off since yesterday. I am so encouraged by her life story and her faith through much personal physical suffering and loss.

Just like the journals I have written along the way and even this blog, Elizabeth wrote of her life and pain. These found words resonate in my heart as I watch and wait to see what God will continue to do. Our hope remains.

More love to Thee, O Christ, more love to Thee!
Hear Thou the prayer I make on bended knee.
This is my earnest plea: More love, O Christ, to Thee;
More love to Thee, more love to Thee!

Once earthly joy I craved, sought peace and rest;
Now Thee alone I seek, give what is best.
This all my prayer shall be: More love, O Christ to Thee;
More love to Thee, more love to Thee!

Let sorrow do its work, come grief or pain;
Sweet are Thy messengers, sweet their refrain,
When they can sing with me: More love, O Christ, to Thee;
More love to Thee, more love to Thee!

Then shall my latest breath whisper Thy praise;
This be the parting cry my heart shall raise;
This still its prayer shall be: More love, O Christ to Thee;
More love to Thee, more love to Thee!

But you don't look sick

2011-09-15T09:06:00.005-04:00

I have tried over and over to write in some meaningful way about my pain and symptoms. I am harder on myself than anyone, and so it always seems to come out sounding weak and complaining and just wrong. I feel pressure to put some kind of spin on this suffering. You see I have lived for a very long time with the eye rolls and whispers and in your face exclamations, "But you don't look sick!" Even after all the emergency room visits, the scans, the bleeding episodes and the surgeries for the hidden disease, endometriosis, I would beat myself up in secret. When my kidney was blocked those months I was pregnant with Danica I experienced nurses who would actually scold me verbally for using the pain medication I did to make it through. Even well meaning family and friends would gossip that there must be something psychological going on. Yes, the dreaded, "It's all in your head."

It was and is in my head and every where else too. Even as a young child I would complain about headaches. They would come from my neck and up the base of my skull. I would ask my mom to rub my neck and shoulders and push on my bones. As I got older I begged her to take me to a chiropractor. I would sometimes get relief from these adjustments and sometimes feel even worse. I'm not going to tell my life story of pain here, but I just want to explain this is not a sudden onset kind of thing. There were periods of trauma or illness in my life that made me much worse. In 2001 after months of widespread pain and a host of other symptoms I visited many specialists in the DC area and was finally diagnosed with fibromyalgia. Over the past decade I have tried almost everything possible including medication, trigger point injections, therapy, supplements and of course lots of prayer. I have always lived with more bad days than good. For years I have edited my life down to the basic things I must do. Any stress, even good stress, can send me to bed or make me sick.

I finally found the perfect analogy on a website to explain what my life is like. It's called The Spoon Theory and is written by Christine Miserandino.

Recently I have been recording video clips instead of blogging because my hands and arms are in so much pain and my head hurts so badly. If I were brave enough I would post one here. I actually DO look sick of late. I haven't had any hair care since April. I'm gray and have split ends and my hair is falling out all over. I only shower every three or four days because it's one of the things that definitely takes away the most spoons. Washing my hair and shaving are painful and exhausting. If I have an appointment or somewhere to go I cannot plan to get ready and do the planned activity on the same day especially if I also have to drive. I say "no" to almost everything and if I say "yes" I often end up canceling. Literally the one thing a month I am committed to is somehow making it to the book club I attend. These ladies are some of the only friends I have here in Ohio. I love to be with them. Their faithfulness to me during the past years is amazing. This is the one thing I do for me that I enjoy completely. Tuesday night was our September meeting, and I have never wanted to leave this basement and go somewhere so badly. By mid afternoon I knew there were too few spoons. Dan is still having kidney stone pain, (He will have another x-ray and consult with a new urologist on Tuesday) and I could barely hold my head up. There was just no way to even push myself.

The past two days have been even more brutal. By mid day I have to lie down. I have pressure in my skull and neurological symptoms like facial numbness, hearing loss and vision disturbances. My neck is so tight and knotted and the pain and weakness extends down into my arms and hands. I feel like I have little spiders crawling on me and my muscles twitch and jump. The spoons I have are reserved exclusively for taking care of Danica and helping Laney with her school homework and our bedtime routine. If I haven't emailed you back or responded on facebook or called you or written you a thank you note or sent a birthday card it's because I am just making it through.

Last Sunday one of my book club friends, Sarah, came to visit me. She brought me the gorgeous spoons shown above. I had never talked about the spoon theory to her, but she had seen me mention it on my facebook status and then lovingly searched for this gift to encourage me. I'm a person that likes to hold onto things when I pray. These spoons are my new prayer partners. When I have nothing left to give I pray for Faith, Hope and Love to carry me moment by moment, grace to grace, strength to strength.

Faithful Soldiers (A Dan post)

2011-09-11T11:51:00.010-04:00

In a recent sermon our pastor expressed as believers we are soldiers in the warfare of this world. If you believe God's will is being done on earth as it is in heaven then you can understand the many battles on earth are really a part of a bigger plan often unexplained to us while living here. My life seems a never ending fight from sunrise to sunset, and I have been through many skirmishes. My Mom's death, wandering aimlessly in college for many years, the many frustrating jobs I've had, my Dad's shooting and heart attack, my wife's ongoing struggles with daily pain and of course our journey with Danica have wounded and scarred my spirit. Even the peace and tranquility in the weight room finds me in a war my herniated disc, kidney stones, tendonitis and shoulder pain. I'm so often angry at the constant battles I endure everyday. Life seems way easier for most other people I know. Somehow my faith in God's will remains steadfast through it all. I pray for forgiveness when I am angry and having the mindset of a soldier gets me through the long days and nights.

On a recent evening Danica awoke with a high pitched constant shriek. It was a wail loud enough to instantly wake anyone from a deep sleep. It took me two seconds to get into her nearby bedroom to discover blood all over her face. My wife, had she entered the room first, may have passed out at this sight. Many years ago Delaney went head first into the corner of a metal filing cabinet at her Montessori school. She required thirteen stitches in her forehead and someone had to help hold her still in her straight jacket while the deep wound was closed at the hospital. Monica had to sit outside listening to her baby girl scream in agony for several minutes because she could not look at the wound without fainting, and I had to step up to the plate. It turns out Danica was screaming from a nosebleed that night, and my "soldier training" instantly kicked in. I remember calmly raising my voice to Monica alerting her to follow me, and then I pulled Danica into the bathroom grabbing a wet washcloth. Because of Danica's medical history we were imagining it was much worse and signaled something more serious than an isolated incident. Strangely, even in the middle of the night, I was ready. I was mentally prepared. The truth is I am always on alert waiting for the next fight.

Had it not been for my life struggles and recent experiences with Danica, I may have dropped unconscious as well when entering her bedroom that night. Seeing Danica get carried away in the arms of a nurse before her first brain surgery was gut wrenchingly painful. Watching her twirl her pink butterfly umbrella into the operating room for her second surgery was cataclysmic for me. I didn't think life would continue for me after that. For three days following Danica's last surgery she was out of control because of the drugs, her pain and the brace. It took three adults to hold her round the clock. I saw my wife had become much stronger too. She refused to leave her side. We have learned there is no time for fainting or crying when another soldier needs you to be strong.

Ten years ago 3,497 people lost their lives in an attack against the United States. The only sense I can possibly make of that tragedy is believing, as most Christians probably do, that every faithful departed soul is now in a much better place than here on earth. The pain of the survivors and family of those who perished is ongoing. Wives losing their husbands. Children losing their mother or father. Mothers and fathers losing sons and daughters. I cannot begin to understand their feelings on this 10th anniversary, but I am blessed to witness how many have soldiered on in this life.

My wife, girls and I have a long way to go. There is no guarantee that any of us will get our life back after all the trials we as a family have already overcome, but there are glimpses of hope. Danica is doing really well, and we hope that Dr. Crawford tells us in late October that her bones are completely healed. We pray she will begin preschool early next year. Her cheerfulness and strength of spirit carry me on days when I want to give up.

Delaney, who has faced many challenges since her sister was born, is doing very well in 4th grade and has several friends in our new neighborhood. She is turning nine tomorrow. The obstacles she has met in her life have made her a very well rounded individual and somewhat independent at such a young age. One thing that amazes me is how she gets out of bed early every morning and prepares for school all by herself. She has developed her talents in art and is thrilled to be back in the barn and riding horses again.

Monica has found some temporary relief of her pain from massage therapy once a week. The benefits last for a few days before her body becomes all knotted up again. She struggles to make it through the day until her body shuts itself down from pain and exhaustion. We travel to a Maryland specialist at end of October and pray for answers and help. I have soldiered through this pain with Monica since I met her. No one knows more than I how real this is and how much she wants to be better so she can live and love.

I am hoping I'm kidney stone free now. The tendonitis in my arm can be restrictive, but I'm getting closer and closer to being back in the shape I was in when I was younger. I need to stay in fighting form, so I'm ready for the next battle whenever it comes. What I absolutely love about this family is that we adapt and overcome. I realize that phrase is "soldier talk" but it's true of this family. We are a strong unit, and we'll carry on with whatever future challenges we face with God's help.

Due to this blog we have heard the stories of many families in similar situations to ours and many being far worse. So many people do not get to watch a miracle unfold like we are with our Danica. We long to be able to support them financially and in service, but we cannot, so we try to help, usually with sharing our story and lifting them in prayer. From a husband and father's perspective struggling with medical bills, moving your family into someone's home and accepting charity from others to make it through all can be very demoralizing.

A male survivor of the WTC attacks, who was actually near where the airplane struck, was able to escape and survive while several of his friends/coworkers did not. He struggled with guilt but soon realized that he had to live his life. My father recently echoed the same belief stating he wakes up and does his part in the world trying to make each day better than before. For me it's about my wife, of course, but mostly for my two daughters. They need me, and I need to get them prepared for living their own life and fighting their own battles. And so I pray for the grace to be a faithful soldier. I am finally beginning to realize we will always have pain and struggles in this world, but there is a bigger picture that will be revealed and victory is a sure thing in Him.

"Endure hardship with us like a good soldier of Christ Jesus." II Timothy 2:3

(Dan wrote this last night and this morning. As I'm posting now he's in a great deal of pain. He believes a stone is stuck in his ureter again. Please pray for an end to this suffering for him. Thank you.)

My God will meet all your needs

2011-09-09T11:52:00.008-04:00

"I have received full payment and even more; I am amply supplied, now that I have received from Epaphroditus the gifts you sent. They are a fragrant offering, an acceptable sacrifice, pleasing to God. And my God will meet all your needs according to his glorious riches in Christ Jesus." Phil. 4:18-19

I have quite a few posts I've worked on here and there the past couple of weeks. Danica's website has been down more than up. I have been frustrated and not able to really get it fixed or understand why. I wasn't directly involved in setting up the URL, so I am dependent on someone else. You'd think by now I would be a little better at asking for help and not being in control, but when it comes to technology I get really crazed.

In the meantime God has been answering some direct needs in amazing ways. One of the specific prayers I have had since I scheduled my three days of appointments with Dr. Henderson in Bethesda for October 19th-22nd, is clear leading. If this is where I need to go to finally get answers about my health God would provide the money. The first expensive visits must be paid up front. The travel is costly and immediately following we have another two day trip to Cincinnati for Danica.

In just a few weeks three separate events have been scheduled to help raise money for our family. Our dear photographer and friend, Christina Adam, of Grace Designs Photography planned a fundraising photoshoot for tomorrow. Within several days all 20 slots were filled. She has also set up a "chip in" account for people who would like to help but cannot attend. Her sweet event note has all the details. While I was sitting in the hospital during Dan's surgery Tuesday I got a note from Christina telling me her friend Alivia has a blog, Simply Give, and she was planning a silent auction to help us as well. My friend, Apryl, is also planning an event on Thursday night, Septmeber 22nd, at Faith Bible Church. I will make sure to link when I have more info. Here's the amazing thing, when I was trying to work through the blog issues and found all these sites pointing for one reason or another to Team Danica I stumbled across Kerri Wyatt Kent's e-newsletter on God's provision. It took me back to that first gift that God sent to show us He was indeed going to meet our needs. If you read through our story it chronicles the manna. He has always supplied enough for today and always made it clear it is from His hands.

Saturday night Dan and I had a soul wrenching heart to heart. He expressed to me how painful it has become for him to accept this help through people. I think we both thought we'd be climbing out of these circumstances by now. For a man who longs to be THE provider for his family it is particularly humbling to admit you just cannot do this alone. I am sure our family has acquired some critics of the compassion we have and continue to receive. Believe me, we torture ourselves with knowing others in similar and worse situations who have little or no support. We long to be able to finally be the ones strong enough and healthy enough to be giving back. We can only be faithful here and continue to humble ourselves and give Him the glory.

Thank you so much to each of you who continue to pray for us and love us. May God bless you as you continue to offer sacrifice for our family.

An hour in the saddle

2011-09-09T08:14:00.008-04:00

"No hour of life is wasted that is spent in a saddle." Winston Churchill

A week ago Delaney began riding lessons again. A dear friend of a friend had read our blog and noticed one of the posts about Delaney's sacrifices over the past few years. She contacted my friend and offered to give Laney horse riding lessons. With the start of school and getting back into a routine and Delaney's birthday coming up Monday we surprised her with this kind "gift" from a stranger. On a sticky hot Thursday evening my mom, Delaney and I headed out to Clinton.

To see Delaney's eyes light up as we entered the barn made my heart swell. There are things you just know your child is meant to do. Not being able to continue lessons was definitely one of the most painful things for Laney to give up. Sweet Kristina is the perfect teacher for my girl. She introduced us to Buddy, a beautiful five year old Rocky Mountain horse. One look into his eyes, and both Laney and I fell in love.

Delaney remembered many of the things about grooming the horse and also riding. When she finally got in the saddle I cried. After her lesson in the barn Kristina took her up the lane towards the setting sun. My heart ached with gratitude for this possibility. Thank you God, for my Delaney Jayne and the passions and talents you have given her. Thank you for life changing generosity with perfect timing that blesses our hearts and gives us new reasons to keep hoping and believing.

I can do all things . . .

2011-09-03T18:12:00.009-04:00

This month is bringing all kinds of "a year ago" flashbacks. I decided to read through my September, 2010 posts to remember. I was still in bed recovering from surgery and both the girls birthdays needed to be celebrated. Every day held the weight of what we were headed into with sweet Danica. The entry titled Fixated made me weep out loud.

I am struggling to even type this. My arms and hands are weak and shaky. My neck and shoulders are twitching and so painful. I had a fascia treatment this morning and like the past few weeks I come home feeling a little better and try to make up for the week I've spent in bed. I tried to do laundry, wipe the floor, clean the bathroom, and dust. I wanted to get something done before my body failed me. Then I had supper to make and Danica needed a bath. Although the lower level in my parent's home is one floor the truth is I do steep stairs more here than at our old house. I have to cook upstairs. Laundry is upstairs. There is only a shower down here so Danica has to have baths upstairs. I get to a point where I am pushing myself beyond what I really can do. I must. This is my life. I cannot quit. We cannot quit.

Neither Dan nor I have any tattoos. We've both said from time to time we really want to get one especially since our journey with Danica. The truth is we would never really spend the money for something like that with all the financial burden we have been and continue to face. Several Sundays ago Dan came home from church with a renewed intention to mark his upper arm. He designed a tattoo with the Scripture reference Phillipians 4:13, "I can do all things through Christ who strengthens me." He has always needed to be in the gym to renew himself physically and spiritually. Lately He has suffered so much that the one thing he seems to really enjoy in life has been taken from him. He has pushed himself through pain to try and continue his routine, but he is weak. Tuesday Dan will have another surgery at Mercy to try to treat a cyst on his kidney and more stones. Neither of us really feel like we can go through this again. But we will. We cannot quit.

A year later are we braver, stronger, and more resilient? I don't think so. I know we are more broken, more humbled, and definitely weaker but have more faith believing each day His strength is being perfected in this weakness. Our hope remains.

(Delaney had the most exciting gift this week. Blog post and pictures soon, I promise. Thank you for continuing to pray specifically for our girl. She is hurting.)

Dear Delaney . . .

2011-08-24T20:39:00.007-04:00

Sweet Delaney Jayne,

You began fourth grade today. You woke up before your alarm and were excited and anxious all at once. You wore the cutest jeans with a shirt that had a bunch of dog breeds on it. You wore bright pink ballet flats and a matching scarf with a floral pattern. You pick out all your clothes now and already have a particular sense of style at eight years old. You don't like to eat breakfast early, but you nibbled on some cinnamon toast and sipped some milk. My cousin Hannah is living here and doing her student teaching. She gave you a ride to and from school.

This is your fifth year at LCCS. Somehow God has always provided for you to be there. I am particularly grateful for this because so many of our days these last years have been just plain hard, and I have always felt some rest knowing there is an entire community of people loving you and praying for you. Of course having grandma there every day is a special gift.

You began kindergarten in 2007 when you were four years old. I was in the hospital in Maryland fighting for Danica's life, and it almost killed me to have you so far away doing something so important without me. Since then it seems we have had constant trial. You have kept a brave face, but I know your heart has been wounded so many times. I see it more now than ever. I know you are loving parts about living here and grandma and grandpa's, but you are also ashamed and dream about having our own home again. I know you have had trouble really connecting with girls in your class since Lauren left two years ago. She is your kindred. I know you wish I could have volunteered in class or just been more present in general. You wish I could plan more play dates or take you to more activities. You've sacrificed things that are clearly your passion, like horse riding lessons and summer vacations to the beach. You scream when you hear the words, "medical bills." You are painfully aware of our financial situation. This makes you anxious. I am so sorry I couldn't have given you more and protected you more.

It's been hard for you to watch your baby sister go through all she has. I know you wonder how life would have gone if she hadn't been born. That's okay. I know you are very angry about how sick I have been. I see your heart and understand you love me but, much like your dad, you are afraid to get too close to this kind of suffering, and you wonder if it will ever really end.

Delaney, I'm sorry. I ache to give you the normal ebb and flow of life. I am so sorry I can't get out of bed so many mornings and you always have to find me lying down. I long to be the fun and energetic mom you want. I wish I wasn't always so tired and on edge and just plain grumpy. I have felt like we are all on autopilot for so long just to get through. So many important things I want to do with you I have not. So many things I've said I wish I could take back. So many things I wished I had said, but I never did.

At the end of every day I crawl into bed with you. We read or watch old episodes of Andy Griffith or the Waltons. We pray and then snuggle and chat while "Sleep Sound in Jesus" plays. I see you cling to me, your mommy, no matter how many times we have tussled during the day. Tonight you looked right at me. I am so haggard and tired and broken. You asked, "Mom, Do you remember what you looked like before?" It hurts me, but I understand. Danica still looks at me the way you used to, like I'm the most beautiful woman in the world. I knew this would fade and you would begin to see my flaws on the inside and the out. I want you to know this is beauty too. This taking one painful step after another to care for you is love.

Jayner, I wanted this to be the year we could just breathe and be. It doesn't look like God has written that for us. Your dad is in pain with continued kidney stones and a blockage. He will have to have another surgery. You see my pain in my face. The next few months will mean more trips to doctors, more upheaval, more bills. It will be more of being stuck and not moving forward. I pray God will protect you. I pray He will keep your heart tender and let no root of bitterness grow there. I pray He will help you to understand how much I love you and how much He loves you too.

Don't ever stop believing in life and love and the possibilities.

Sweet Dreams. Mom

Candle in the dark

2011-08-17T22:49:00.009-04:00

Reading Amy Carmichael tonight.

" . . . Your prayer for perfect healing went to my heart. God knows how I long to be well and able to do more. But yesterday as I read Psalm 84:11, `No good thing will He withhold from them that live a godly life', I wondered if He would not rather the emphasis were laid on this: `Draw us so into accord with Thyself that no good thing shall be withheld', instead of: `Health is a good thing. Lord, give it.'

More than three times I have prayed Paul's prayer, but so far always the answer has been the one that came to him: `My grace is sufficient for thee' (2 Corinthians 12:9).

Any day that might change. What is any illness to Him? One touch and it would be gone. But I wonder if the Lord is saying not only to me but also to you, `See to it that you are in perfect accord with Me and then trust Me to withhold no good thing.'

If health be that good thing, oh, how joyful it will be! Every morning I waken with the hope, `Perhaps today'. But I want first to want His will, be that will mine or not. It is there that prayer can help most.

You don't need words to tell you how I am feeling about this weary pain. It seems sometimes that there is no way to God's best but through pain, and yet how earnestly one longs to save a dear one from it.

Don't be disappointed about not being fit for work just yet. `Let patience have her perfect work' has been one of the words set to me to learn by heart. I never found patience easy, being by nature a most impatient mortal; even one week in bed seemed impossible in old days. Well, I only tell you so to help you to know that I understand the ache to be well and up and out. And He understands far better than I do. I often think of those hours on the cross---helpless hours. He understands.

And the depression that follows pain He understands too. `My soul cleaveth to the dust': no truer words were ever written. Sometimes just to know one is understood helps. . ."

"CHRIST suffered in the flesh.
If those who follow Him in obedience now
are called to suffer (as they will be),
they can conquer if they arm themselves
with the same mind' (1 Peter 4:1)

He looked on to the glory which should follow.
So they."

Looking on to glory through my tears.

Be still

2011-08-14T09:23:00.013-04:00

"He says, “Be still, and know that I am God." Psalm 46:10

I'm home alone. I skipped church to be here alone. Dan took the girls to Sunday school so I could have a few hours to just be still. Living here in my parent's lower level has been a blessing but a challenge for me. There is always some kind of activity above. I have not relaxed here. I rarely read. I haven't sipped any hot tea or found a place to nestle in with thoughts and prayers and words. From early morning until late at night there are thumps and bumps and voices and a strange pull of frenetic energy that is inevitable from three families living under one roof. The girls are always wanting to go upstairs or outside and see what everyone else is up to. This week my cousin, Hannah, will also be moving here to live in my dad's study. She is coming to student teach at Lake Center and will be in Delaney's class some of the time. Delaney is thrilled. All I can think is there is no more room at the Roberts' inn. Having this place to land when we would literally be in a shelter somewhere otherwise is top of our gratitude list. To even complain for a minute about how difficult this is sometimes seems so wrong. I know God has us here for a reason. I just need some time to be quiet and search out the treasures hidden here.

I have not been well. I am not well. This suffering has made even the basic tasks of caring for my family very difficult. When people ask me how I am feeling I want to be honest, but I cannot continually launch into my symptoms and how every step these days is a fight. I know they must rolling their eyes. I mean how in the world can one family endure so much continuous trial? I don't blame them for needing to look away. The faithful (you know who you are) who have stayed and stayed and stayed are perhaps the greatest gift we have received. After the journey we have traveled for years now I am least equipped to finally face the physical pain that has ruled my life for well over a decade. I am riddled with guilt that my dear Dan and Delaney and Danica would have to go through another season of hurt to perhaps find myself healing. I do not know where the money will come from this time to travel to see the specialist and get all the imaging done and make a good treatment decision. Just like when we began the hunt for Danica's diagnoses and treatment over two years ago, I am stepping out on faith. I'm believing God will not take us where He cannot provide for us and keep us. He's in this.

This is what I know for sure. In the past few weeks God has been leading me in specific ways to understand I could find help. He has allowed my physical pain and disability to increase to a level I have never experienced before. Almost like He's shouting at me to find help. He has given me courage specifically through Danica to know healing is possible and any improvement in my pain and day to day life is worth fighting for. He's calming my heart about the new road I see stretching before me. He's provided for us through gift cards to help with school shopping and groceries and even an offer from someone to treat me with massage and fascia release free of charge. He's been faithful. He will continue to be faithful.

I need to be still and quiet and alone to reflect on how far God has brought us and rest in His promises and loving arms for this next chapter. Our hope remains!

(Today I finally was able to make my appointment with Dr. Fraser Henderson in Bethesda, MD. It is 8 weeks away. I will see him Wednesday, October 19th, have very specific imaging done on Thursday, the 20th, and then see him again on Friday the 21st. I will write later about my worsening symptoms and why this is the doctor I need to see. The Tuesday after, the 25th, at 8:30 in the morning we will need to be in Cincinnati and hope and pray Danica's scan will show complete fusion, and she will be able to begin some life without her collar. God's timing is perfect. Whatever He has written for my own healing had to wait until Danica could get to this point in her hers. Please pray I will be able to find some relief with massage and be able to function during the next two months. Please pray for Dan and I's marriage. All this is so hard and Dan admits he draws from my strength and energy. When I am this low he gets very discouraged. Dan is healing from his stones. He still has some pain on and off and sees his surgeon in two weeks to follow up and have another scan. Delaney is also struggling. She begins fourth grade next week. She is visibly angry with me for feeling so sick. Since she was four years old and had to move here to Ohio with my parents while I was hospitalized in Maryland she has had so much to understand and deal with. Every night she prays for health for her family and a "normal" life. Although blessed with much love she feels very insecure. Please pray Danica will continue to heal and progress in therapy. Her sweet spirit rescues me every day. Please pray for peace and little breaks of stillness to know God is God. Thank you.)

Providence and promises

2011-07-28T14:56:00.014-04:00

"Remember that in the providences of God the believer is passive, but with regard to the promises of God he is active. In the one case he is to “be still” and know that God reigns, and that the “Judge of all the earth must do right.” In the other, his faith, childlike, unquestioning, and unwavering, is to take hold of what God says, and of what God is, believing that what He has promised He is also able and willing to perform. This is to be “strong in faith, giving glory to God.” Octavius Winslow

It's been fifteen months since Danica has had a neck free from some kind of collar or brace. She is just now allowed to remove it for physical therapy. I took this photo today at her session. To see her delicate throat and neck so straight and so strong makes me buckle in the knees and weep. Oh how we have collectively hoped and prayed with each one of you for God to heal our girl. We have passively watched for His perfect will in Danica's young life. All the while we have actively claimed His promises of provision and grace and strength as we waited. Could we ever give Him enough glory?

As I type this I am wincing in pain from a back injury. I can truly barely function. I pulled something Sunday lifting my girl, and it has gone from bad to worse. I once again want to ask Him "Why?" in the same breath as praising Him. My soul cries, "How much is enough, Lord? What are you trying to accomplish through me in this place of constant physical hurt that breaks my spirit and grieves my heart?"

Tomorrow Dan will have surgery at Mercy Medical Center. We will be there at 7am for his pre-scans and his surgery will be at 9am. He has been suffering extreme abdominal pain and other symptoms for months. Finally last week they found three kidney stones, two on the right side and one very large 17mm one on the left. After the surgery he will have a stent in place and try to pass the pieces they will break up during his procedure. He will be off work next week and experiencing a good deal of discomfort until the stent will be removed.

I know we've asked a hundred times for prayer. Humbly, we ask you again to lift us up. And please don't forget to thank our God for Danica's continued healing. His promises are true. He is always good. Our hope remains.

One of our "theme songs". It's on repeat today.

Because I love her . . . like my own soul

2011-07-17T19:07:00.005-04:00

"And it came to pass, when he had made an end of speaking unto Saul, that the soul of Jonathan was knit with the soul of David, and Jonathan loved him as his own soul. And Saul took him that day, and would let him go no more home to his father's house. Then Jonathan and David made a covenant, because he loved him as his own soul." 1 Samuel 18:1-3

Several weeks ago we were blessed to have my dear friend Angie and her family here to visit for twenty-four hours. This picture of us and our sweet littlest girls, Audrey and Danica, was taken the morning they climbed into their van and pulled away. Part of my heart left again with her that morning. She has carried it for more than thirty years now. In a world of broken promises our covenant has remained. I love her, and she loves me.

I have written about her. She has written about me too. We are kindred in a way you can only understand if you have experienced it. She is a fighter and a survivor of cancer three times already. A week after her visit I got the call. "Moni, they found another mass. This time it's in my colon. It's cancer. . . again." This insidious disease is back and way too soon. She is weak and tired and afraid. My absolute first instinctual heart cry was to our God. "I will take her place. Please, release her from this cross and let me take it." This is not a noble thought made because it could not ever become a possibility. I would do it. In a second. I would lay down my life for this friend.

We were little girls playing beneath the dogwood trees and swinging as high as we could at Gypsy Hill Park. We were young girls trading well worn books, sitting on our beds writing in our journals and reading poetry out loud. We were teenagers dreaming of our futures, what men God might have for us to marry and the names of our children. We were young adults driving the gorgeous back roads of the Shenandoah Valley countryside singing at the top of our lungs with the cool evening air blowing in our hair. Little did we know how beautiful our lives would become and how bittersweet. We could have never imagined the pain and suffering or the amazing Grace that would carry us.

Angie is having her cancer removed surgically tomorrow. I am going through the motions of my own life because I must, but every single breath I take is in thought and prayer for her and her family. So many of you have stormed our God in prayer for Danica and our family. Won't you please pray for my friend tonight? Please pray for her physical healing. Please pray for peace of mind and strength of spirit as she recovers and faces chemotherapy again. Please pray for her husband Brian and her sweet children, Asher, Micah and Audrey.

I have seen real life miracles worked out through faith and love. I am on my knees pleading for another one tonight. I love her . . . like my own soul. I rest knowing He loves her more.

You may follow Angie's journey on her blog at www.springofjoy.org

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Living in the gaps and saying "thank you"

2011-06-27T09:11:00.016-04:00

"The answer must be, I think, that beauty and grace are performed whether or not we will sense them. The least we can do is try to be there." Annie Dillard

I wasn't going to blog this summer. I have been writing privately instead which makes me even more honest and accountable, because I'm not trying to put any best foot forward (if I even have a "best foot" anymore). So many of you have written me expressing your sadness that I would just stop in the middle of our story. Please know we are forever grateful for the time, energy, prayer and resources you have invested into our lives. I am convinced we would not be here today except for God's provision through you. It's not that I wanted to quit completely or leave you hanging. I just felt the need to rest and reflect. I have been really afraid to keep saying out loud how bad things were getting in my own heart. I have been in a very dark place and begging for God to show a glimpse of Himself to me.

All last week I would ping pong between spending hours trying to find the good in our move and living in the basement at my parent's house and deep depression and discontentment and trying to make a plan out of here.

I've been reading Annie Dillard's Pilgrim at Tinker Creek. At the very end of the book is one of my favorite passages:

Thomas Merton wrote, "There is always a temptation to diddle around in the contemplative life, making itsy-bitsy statues. " There is always an enormous temptation in all of life to diddle around making itsy-bitsy friends and meals and journeys for itsy-bitsy years on end. It is so self-conscious, so apparently moral, simply to step aside from the gaps where the creeks and winds pour down, saying, I never merited this grace, quite rightly, and then to sulk along the rest of your days on the edge of rage. I won't have it. The world is wilder than that in all directions, more dangerous and bitter, more extravagant and bright. We are making hay when we should be making whoopee; we are raising tomatoes when we should be raising Cain, or Lazarus.

Ezekiel excoriates false prophets as those who have "not gone up into the gaps." The gaps are the thing. The gaps are the spirit's one home, the altitudes and latitudes so dazzlingly spare and clean that the spirit can discover itself for the first time like a once-blind man unbound. The gaps are the clifts in the rock where you cower to see the back parts of God; they are the fissures between mountains and cells the wind lances through, the icy narrowing fjords splitting the cliffs of mystery. Go up into the gaps. If you can find them; they shift and vanish too. Stalk the gaps. Squeak into a gap in the soil, turn, and unlock-more than a maple-a universe. This is how you spend this afternoon, and tomorrow morning, and tomorrow afternoon. Spend the afternoon. You can't take it with you . . .

There is not a guarantee in the world. Oh your needs are guaranteed, your needs are absolutely guaranteed by the most stringent of warranties, in the plainest, truest words: knock; seek; ask. But you must read the fine print. "Not as the world giveth, give I unto you." That's the catch. If you can catch it it will catch you up, aloft, up to any gap at all, and you'll come back, for you will come back, transformed in a way you may not have bargained for-dribbling and crazed. The waters of separation, however lightly sprinkled, leave indelible stains. Did you think, before you were caught, that you needed, say, life? Do you think you will keep your life, or anything else you love? But no. Your needs are all met. But not as the world giveth. You see the needs of your own spirit met whenever you have asked, and you have learned that the outrageous guarantee holds.

I think that the dying pray at the last not "please," but "thank you," as a guest thanks his host at the door. Falling from airplanes the people are crying thank you, thank you, all down the air; and the cold carriages draw up for them on the rocks. Divinity is not playful. The universe was not made in jest but in solemn incomprehensible earnest. By a power that is unfathomably secret, and holy, and fleet. There is nothing to be done about it, but ignore it, or see. And then you walk fearlessly, eating what you must, growing wherever you can, like the monk on the road who knows precisely how vulnerable he is, who takes no comfort among death-forgetting men, and who carries his vision of vastness and might around in his tunic like a live coal which neither burns nor warms him, but with which he will not part.

Halfway through the day yesterday I began to quit praying "please" and start praying "thank you" again. I could ignore grace or see it. My grandma Wishart who also lives here took me to an open house at a home for sale on the corner of our street. I really didn't want to go, and I'm not sure why she thought it would be a good idea. I knew it would make me sad and covetous. The wound of not having my own home is open and raw and seeing a beautiful home I couldn't have seemed to be like salt in my bleeding heart. The family who is selling the home has suffered incredible loss. Their husband and father died from cancer. Now they are moving back to West Virginia to be near her family for support. Walking through the home made me think about the wife and mother's heart and how sad she must be feeling to leave this last place she lived and loved with him. I thought about how she would live in a tent or cave to have one more day with him. I thought about how we have come through so many fires with the most important thing surviving. We have one another. We have flesh and blood to touch and love one more day.

I went home and instead of crawling back into my dark bedroom to cry I started to look for the backside of God in this gap He's brought me to. He showed me His glory in a little found toad and the sun and my beautiful grandmother's face as she enjoyed her stained glass hobby. He gave me glimpses of His ever faithful grace. He gave me a yielded heart of submission to this place which is as holy as any other if I would only keep my eyes open and keep saying "thank you" over and over again.

Dan's CT is at Mercy this afternoon and then we head to Cincinnati for a grueling day tomorrow. Please pray for safety and strength for us. Please pray for little Danica who is so much more aware each trip of the challenges she is facing. Please pray for Delaney's heart as it longs for all this to end so we might never have to leave her again. Pray we will forever cling to the hope that does not disappoint and keep believing God's outrageous guarantee that always holds.

Keep calm and carry on

2011-06-21T14:43:00.002-04:00

Have I posted this as a subject before? I have this in a frame in my kitchen . . . well, I don't really have a kitchen any more, but it's hanging by my wet bar type kitchenette place in our new home. It reminds me every day to breathe and put one foot in front of the other.

I mentioned on facebook about a week ago that Danica has had some symptoms return. It's like you can see the Chiari in her face. She has been noticably limping and complaining her foot hurts her. Her spasticity has increased, and she has also been choking and waking every night. We had an appointment already scheduled with Dr. Crawford in Cincinnati for a week from today, June 28th, at 8:10 in the morning. This visit was about getting an x-ray to check on fusion. After talking to Dr. Crone's office today about Danica's issues he agreed we need to check the brain. Danica will be put to sleep and have an MRI immediately following her appointment with Dr. Crawford.

Will you please pray for us? It seems we cannot catch our breath for any amount of time before another wave knocks us over.

We are mostly moved and sleeping here at our new little nest. There are certainly adjustments, but I am looking and finding blessings everywhere as we settle. Even now Delaney is singing at the top of her lungs in her room with her dear neighborhood friend, Emma. They have played with their American Girl dolls and studied rocks and are kindred spirits in a gift from God kind of way. The safety of being on one level is also a blessing. I am not holding my breath every second of the day and exhausting myself going up and down the steps holding Danica's hand. Whatever God is asking us to do next I am resting in the sure provision of this place for now.

Carrying on. Our Hope remains!

Moving and taking a blog break

2011-06-12T20:39:00.007-04:00

"The word of righteousness will be peace, and the effect of righteousness, quietness and assurance forever. My people will dwell in a peaceful habitation, in secure dwellings, and in quiet resting places." Isaiah 32:17-18

Our home is pretty much packed. Friday we will move our big things and sleep at my parent's for the first time. Delaney came up to her room tonight and saw all her ceiling "flair" was gone. She got big tears in her eyes and said, "I'm getting really emotional." That's an understatement for me. I thought I was ready for this, but I'm not. I said over and over three years ago the next time we had to move it would ruin me. It takes something from me each time that I can't explain. After all we have been through I feel like this is the tipping point. I feel afraid.

The past week I have been completely manic. I have had repeated panic attacks. My attacks are usually prompted by a feeling I cannot escape somewhere. I think not having a car has added to this, but I didn't pinpoint that until later. They also have come from thoughts of living in the basement. I had my first panic attack in college in a basement apartment in an old building on South Main Street in Harrisonburg called Shenrock. I didn't know what was happening to me then, but there was a huge party in an apartment upstairs, and I couldn't get out of the door to even leave. I remember the racing thoughts and the crushing weight on my chest accompanied by the true inability to breathe.

Since my last post I have pushed myself physically more than I thought possible. I have literally packed our entire house and carried all the boxes down to our dining room. My head will not stop thinking about the things we have had to sell, the things in our garage still to get rid of, the many logistics of phone, email and mail changes for all the utilities, Danica's medical providers and bill collectors which I have not taken care of yet. My brain fixates on the few things I have left that matter so much to me. They are not valuable things but sentimental things. I want to move them all myself with kid gloves if I have to, but what I really want is to leave them in my car until I find a home again.

My parent's home is beautiful. The neighborhood is lovely. The basement although only having two windows for natural light is new and clean and homey. If someone had to move into a basement apartment this is the most ideal situation you could find. Still, I feel like I can't do it. I feel like I'm going to bail. I feel like I'm going to get everything there and make sure my family is okay and then go AWOL. What kind of wife and mother does that? What kind of wife and mother would sacrifice what I have the past four years, suffer and endure all we have as a family, write on this blog over and over again about faith and hope and then completely crack?

I'm ashamed. I wonder how I could post Big girl britches just over a week ago and then fall so far so fast? I wonder if all this stress for all this time has brought back the mental illness I once suffered from and thought I had conquered through Christ and His strength. I wonder if the chemistry of my brain is so altered I won't be able to get back to a place of safety and joy and peace. I wonder if this is sin or punishment for some sin. I wonder if I could have more faith if things would get better. I worry about how my children will remember these times. I wonder if they will ever be able to appreciate how much I love them and how much I wanted things to be different and how hard Dan and I have worked to try to change things.

I am planning to take a break from blogging here. I hope that you will continue to pray for us even though there are not frequent posts. I ask that you will please especially pray for Danica's continued fusion and healing. I ask that you will please pray for peace for Dan, Delaney, Danica and I. Certainly we do not just wrestle against flesh and blood but also principalities and powers. I go back to the truth every day. We are more than conquerers. Nothing can separate us from His love. He is able to guard our hearts and minds through Christ Jesus. This is not our home. We are heading for a place with no more pain, no more sorrow, no more tears . . . and no more moving ever. Safe.

(Thank you to dear Bethany who mailed me a note with the above verses. I have been reading them over and over and over again."

Big girl britches

2011-06-03T19:57:00.007-04:00

Friday nights are always cathartic for us. We are exhausted and ready for an even earlier bedtime than usual. We always exhale a little and say a "thank you" we made it through another week of life. Tonight we were especially grateful Dan made it home with our old JEEP. He had barely made it to work on Wednesday morning and then worked all day and through the night, only curling up for a couple hours sleep, and then worked again all day Thursday. Danica and I took him lunch after her therapy Thursday morning, and he looked as tired as I have ever seen him and discouraged. He had just written the "break through" post about his glass finally being full and then the JEEP gave out. I could see his heart wondering if maybe the other shoe really is always going to drop. Danica and I have been shuttling he and Delaney around since. Tonight he decided he should try to get the JEEP home. He let me know he was leaving in case we needed to find him on the side of 77, and the girls and I had a little prayer meeting. Imagine our joy when he pulled up in front of the house. Hallelujah!

The funny thing is I truly haven't been stressed about the car. My first response was concern for Dan's safety and then some truth, "The Lord gives and the Lord takes away. Blessed be the name of the Lord." Two years ago He gave us this vehicle free and clear. Although we have had to put money into it to keep it going. It has been reliable and a true blessing. There was something deeper than my remebering how many times God has been faithful in the past. By God's grace I really have grown into this response of peace when life happens.

Not long before our Florida trip we made the very hard but necessary decision to move into my parent's basement. I was struggling mentally and emotionally. It was the most depressed I have felt through this entire journey. I shared with you all how brutal the roller coaster was of trying to be strong and positive then rushing down into despair and worry without warning. I made an appointment with my doctor and began a new medication in addition to all the others I was taking. I can tell you without a doubt it has changed my life. I feel better than I have in a decade. I am stable. The side effects have been manageable. All except one. I have gained weight. For someone who has literally always felt comfortable with my body this has been a challenge for me. I still see the benefits as far outweighing (no pun intended) the problem for now. I saw my doctor today, and I was reminded how thin and fragile and truly unwell I was last summer. Since then I have gained 15 pounds, 7 of which have quickly accumulated since beginning this medication. I have had two very major, body changing surgeries. I have truly healed in so many ways.

Tuesday I made a trip to visit a dear friend who I made online right at the beginning of Danica's Chiari journey. Her son, Josh, had his first decompression two weeks before Danica did with Dr. Cohen. We have never met in person but walked a very similar road with our children following their first brain surgeries. She was recently diagnosed with cancer. If there are good and bad kinds of cancer this is one of the bad kinds. I had planned to drive to her oncology center in Pennsylvania and do a chemo day with her, but she became very sick and her blood counts were so bad they hospitalized her. I decided to go anyways to visit. I have been to many hospitals in my life. I have been the patient and the one sitting vigil. I am always reminded when I walk in the doors how "real life" stops and this world hangs on threads. I saw her body, so frail and fighting, unable to eat because of thrush and the burning from the radiation and nausea from chemotherapy with a stomach tube keeping her fed and IVs keeping her hydrated. She talked about her disease as frankly as I have ever heard or read. She was matter of fact and still resolved. I was completely humbled and changed by the time spent with her.

As I drove home my pants felt a little tight and I loosened the button. I felt shame alone in my own car about my growing tummy. Then I thought about how my body has carried me through my life, often betraying me, making me aware of weakness at every turn. I am stronger now than I have been in years. I am in less pain. I am able to do more. I am able to go longer and work harder. I have always had a test for my size. A pair of Ralph Lauren jeans. Not the Ralph you buy at TJ Maxx. Real ones. Timeless, beautiful and perfectly made. I have been able to comfortably fit in these jeans for 10 years. Tomorrow I think I'll yield to this new body and buy a new pair of big girl britches. I'll let myself be comfortable with the scars and stretching and the growing because a size 10 could be one of the best gifts I've been given in a very long time.

(Danica's appointment in Cincinnati with Dr. Crawford was moved from June 14th to June 28th. Although we are anxious to see the progression of the fusion we are relieved to have it pushed until we are moved and have a week to settle. She had a great therapy session this week and got to ride an adaptive bike. I am hoping Dr. Crawford will give us permission to have a trike adapated for her to ride in our new neighborhood. She was so thrilled and proud to be back on wheels.)

Glass half full (A Dan post from Saturday night)

2011-05-31T21:43:00.009-04:00

When I met my wife twelve years ago and began to understand who she was I told her even before we got married she would end up being the backbone of "us". Even at thirty-two years old I felt insecure like I was not the man for the job. I knew she was strong enough. The funny thing is if you know our family you would easily assume that I am the one who is the epitome of strength. In the weight room I out perform guys half my age, and I rarely get sick. I have an ability to keep going physically and mentally when many others would have to stop for rest. Despite her many physical and emotional challenges, Monica is simply the rock that this family stands on day in and day out. If any men are reading this blog I hope you are not afraid to admit you are not as strong as you think you are.

Tonight as my beautiful wife and I sat out on our little front porch sharing a bottle of cheap champagne we talked about life and what we want our kids to know about us should the good Lord call us up. Why is this important to me? I have always wanted to know exactly what my mom would have said to me, if she could talk, when we were alone in the hospital room the day of her death. To me, this unknown is why today I still see life as a half empty glass. I want to know what mom thought of her life those last days and hours. I never knew if she was happy before the cancer and what her hopes and dreams were for me. I never knew if she felt ready to go and if she was looking forward to Heaven.

In comparison, I know my dad has lived a full life at seventy-six. He has told me that every new day is the best day in his long, very rewarding life. He is my hero. There is also my older brother that has always listened to his inner voice and still plays the drums professionally along with his "day job" and taking care of his family. In my opinion, this is who my brother is and always has been, and he is my idol in life. He is someone who has a passion and has never sacrificed that God given talent, and he does not have to prove anything else to me for me to always look up to him.

Tonight I broke one of our four Waterford crystal champagne flutes. It fell onto a cement mold of a puppy that we placed in our mulch bed around our front porch. My wife and I were devastated as we have treasured this wedding gift for years, but I quickly came up with a reasoning for the loss. Before ships are launched to sea, they are christened with a new bottle of champagne. We are moving from this house and planning on adding a new puppy to our household soon so the broken champagne glass was to honor our old house for providing shelter and welcome the new addition to our family. But as I blog tonight I also think the broken crystal may have a greater meaning in my life. Maybe it's telling me that once the glass is broken it cannot be put back together much like my life cannot be lived over again. Tonight I had a wonderful evening with my gorgeous wife knowing my beautiful daughters were safely at Pops and Meems. I realized that my glass is not half empty no matter how many challenges we face. I can't go back and write what my mom will say to me on her last day. I am the person that God knew I always was and always will be, and He has blessed me with so much more than I deserve. Life is fragile much like the Waterford crystal. Our relationships are fragile. We should not take either one for granted nor can we have a "do-over" should either one break.

Reflecting on my life, a tattoo inscription I have dreamed of was "Endure" on the inside of my bicep. It would signify that I have made it this far regardless of my "half empty glass" outlook on life and all the adversity my family and I have faced. Tonight it dawned on me this seems to be a pessimistic way of viewing life. Instead I'm thinking a line from a Sanctus Real song may be my answer for my tattoo and my new outlook on life. I mentioned the song Lead Me in a previous blog post, and the verse from that song that sticks with me the most is "...Father give me the strength to be all that I am called to be." I feel this simple plea defines my life. I strive to become physically stronger in the weight room. I strive to be more of a rock for my wife and my girls. I pray to have faith in the Lord that He will continue to give me the strength I need to confront any obstacles that my fragile but full life has in store. I am truly blessed.

Vote for Danica!

2011-05-30T19:39:00.013-04:00

This picture of our sweet girl was one of the last ones taken of her the week before we headed to Iowa last May. During that visit with Dr. Menezes she began wearing a collar and then moved on to an Aspen and then her Minerva brace. I knew the day our friend, Christina Adam, of Grace Designs Photography took her picture it would be one of the last times I might see her small white throat and neck in pictures for a very long time.

Someone suggested I enter this picture that has been round the world thousands of times on Team Danica's blog and on hundreds of prayer cards on refrigerators and bulletin boards all over the country into the Parents Magazine cover photo contest. Could you please link here, vote for her and then share with all your friends and family asking them to vote too? I have been praying for an opportunity on a larger scale to share about Danica's story and raise Chiari awareneess. I wish I had heard of Chiari and some of the symptoms before that day they called me and said they found it on her MRI. I wish I had known NOT to believe them when the local neurosurgeon said the finding was "unrelated" to Danica's many neurological and physical manifestations of Chiari. I wish I knew the questions to ask before we rushed into Danica's first decompression when we finally found a surgeon who at least understood and believed her slumping brain was definitely partly to blame for all her pain and disability. I wish we had known that strange look in Danica's eye in some of her baby pictures was a sign of bone malformation. I wish there had been an article or a news story or something in the many childhood health books I read to clue me in. Now that we are moving past crisis I will be devoting as much time and energy as possible to raise awareness and funds for research. Please help by voting for our little miracle girl, Danica Jean!

309 Hoover Street

2011-05-29T22:31:00.004-04:00

Staunton, Virginia. The little three bedroom, one and a half bath brick house I grew up in. A little neighborhood that branched off West Beverly Street. It backed to woods with an alley that ended in the Hecks, Kroger and Family Dollar parking lot. A full front porch with white iron trellis and a porch swing. A big maple shading the yard and keeping the grass from ever growing really well. A row of peonies separated our yard from Mrs. Wiseman's little ranch. They smelled like the perfume she wore too much of and were always full of ants, but I loved them anyway. She was the first Jewish woman I ever met. My mom said she believed everything in the Bible but the the words in red. On the other side of our house lived Millie and her husband Sam. We didn't have air conditioning and the whole house fan was bring in the cool Valley air at night and the smell of the Winston cigarettes Sam smoked on the porch after dark. Those were the days I slept on the top bunk and hid books under my pillow to read with a flashlight after I thought my sister was asleep. Millie drew her eyebrows on with a pencil and my mom told me she was sad because she saw her father kill himself when she was young, and she found his eyeball later. I grew up with grass stained feet all summer and a tent over the clothesline using mom's good sheets pinned into the ground. I grew up with orange and brown mushroom wallpaper in the eat in kitchen and lots of orange Tupperware. I love orange. I grew up with dinner on the table every night at five o'clock. My mom put on lipstick right before dad got home and would put a dab of Cachet on her neck. I grew up with homemade bread and chocolate chip cookies. I grew up dressing like Anne of Green Gables dreaming of owning a real life Gunne Saxe and not one I picked the pattern from at the Piece Goods Shop and my mom sewed at night while I slept. I knew who I was very young. I read poetry up in the branches of my favorite climbable tree and shot baskets in my regulation NBA hoop my dad bought me after several seasons of amazing UVA Cavaliers basketball. (Who can forget John Crotty?) I felt old when I turned six. I wanted the wood grain of our furniture to match. I saved up money to buy Victoria magazines and checked out design books from the adult section at the Staunton Public Library. I got a paper route and saved my money for a walnut and brass daybed, Laura Ashley chintz and college. The neighborhood deteriorated around us, but it never felt unsafe. I think maybe the rent increased in the seven years we lived there from the $300 it began at in 1981. The basement we used to ride our bikes and rollerskate in became a project and was eventually finished into a study for my dad and a family room. The Iris on the side of the house multiplied. The Zinnias tucked neatly behind the railroad ties at the back grew from seeds we planted every year sprinkled in with marigolds. I could go on and on. HOME. Not like the movies. Not a colonial with a formal living room and a dining room and a window seat and Wedgewood china in a hutch like I always dreamed of. Instead, a few white milkglass hobnail vases always full of flowers and Corelle Ware with paper napkins. Mostly sheets and towels that were a little stiff and scratchy from drying out of doors while I imagined life was going to be found in thread count and Egyptian cotton. How does a girl know about these things or long for them?

Tonight Dan and I sat on the little front porch on 35th Sreet. We have lived here three years. This home was a gift from God then and now. We had lived on Pontius only three months and before we could catch our breath a bombshell. The move to Ohio almost killed me, and I had to begin the hardest job of my life, database work from home with a six month old baby. I longed for DC and Ann Taylor suits and long lunches at Clydes. I longed to be peddling the American dream--real estate, floorplans, granite and hardwood. I wanted to be meeting with designers about model homes and not visiting horrible little rentals on the south side of Canton trying to find something we could afford on our new budget. When we walked into this sweet house we said "yes" in our hearts. We had to rest. $30,720 rent later. More tears and sleepless nights and prayers and laughing and praising and fighting and yelling and holding our breath than we ever thought we'd live. More breaking and healing than we ever hoped for. NEST. Our safe place to hide. As we sat in the evening air as we have often done on date nights before, talking about our time in this place, one thing stood out. No matter how much we idealize where we would like our children to grow up and our life to take place, God will work His miracles anywhere. We will plan our ways, but He will direct our paths. Shelter is love no matter what kind of dishes you have.

We walked to Milk and Honey in the dark after hours of talking. We held hands and laughed. We came back and slow danced to our favorite playlist. Our $200 Big Lots mattress my parents bought us when we moved here (because we had to sell almost everything we owned) is the softest place to land when you are in love. In love with life. At peace with wherever God will take us. Finally breathing out a little after holding our breath for what seems like forever. I know our kids will remember home like I do our little rental in Staunton. Wherever we are together as a family, living and loving we will be okay. HOME. On this side of Heaven we will look for manna in the morning and pitch our tent in the wilderness, and we won't forget His faithfulness. It's ENOUGH. Dayenu.

A world away

2011-05-28T09:54:00.009-04:00

I will never forget the day the first email came from Paypal. A notice of a donation from someone "down under." A huge gesture from a girl a world away from our little life in Canton, Ohio. I saw the name and address and thought for sure it had to be a scam of some kind. No one, especially a stranger, would donate this much money to Team Danica. I emailed Dan. I called people I thought might be able to shed some light on who this person was and why she would make such a gift to us in our desperate need. It was over a year ago now, in the early days when we were stepping out in simple faith that somehow God would provide for us on the long journey ahead. This was before any fundraisers, any newspaper articles, any real attention to what we would need from all of you to really find help for our sweet girl. It was before we knew ourselves how much love and support would have to happen to get us through. But God knew, and He was making a way.

I don't remember my exact response. I know I emailed her with these verses from Matthew 25 in my thank you email, "For I was hungry and you gave me food, I was thirsty and you gave me something to drink, I was a stranger and you invited me in, I was naked and you gave me clothing, I was sick and you took care of me, I was in prison and you visited me.’ Then the righteous will answer him, ‘Lord, when did we see you hungry and feed you, or thirsty and give you something to drink? When did we see you a stranger and invite you in, or naked and clothe you? When did we see you sick or in prison and visit you?’ And the king will answer them, ‘I tell you the truth, just as you did it for one of the least of these brothers or sisters of mine, you did it for me.’" I asked her, "Who are you?" She humbly responded she did not need a relationship with me. She did not need praise or thanks. God had moved her to do this big thing, snd she listened. Simple. Beautiful. Life changing.

Over the past year this dear sister has commited support to our family monthly and paid Danica's deductible twice with her substantial donations. She has been a sure thing in our world where nothing could be predicted. This young woman's generosity and love became the foundation where all the other love from hundreds of you would rest. It was God's first clear message to pay attention and see what impossible things He was going to accomplish.

Around Christmas our benefactor was able to come to the United States for a few weeks. Because of her travel schedule and the fact we were still homebound and Danica was still in her wheelchair we were not able to meet her then, but she sent a package with a few books for the girls. "Swim Little Wombat, Swim!" and "Koala Lou" became instant bedtime favorites in our house, and everytime we read them we say a special prayer for our dear Australian sister. Her gift to me was a gorgeous vintage hard cover edition of Amy Carmichael's "Toward Jerusalem." It took my breath away. How could she know this beautiful book would be the best gift of all?

I have tried to write about her ongoing generosity for months. I cannot seem to articulate it or how it has changed our hearts and our lives in a way that does it any justice. Still, the omission of this amazing love leaves a gaping hole in our story. The crux of it all comes to our faithful God. If you are in need today and thinking or feeling there are limits to what He can provide or accomplish in and through you please get on your knees and look at Calvary. As my dear Amy Carmichael wrote in another book of hers, "Rose from Brier", "Love that loves like that can be trusted with all this."

My mom used to sing a song to us when we were little. I think this is how it goes,

"He owns the cattle on a thousand hills,
The wealth in every mine;
He owns the rivers and the rocks and rills,
The sun and stars that shine.
Wonderful riches, more than tongue can tell -
He is my Father so they're mine as well;
He owns the cattle on a thousand hills -
I know that He will care for me."

Stirring the heart of a sister a world away God used part of His beautiful body to care for us. Thank you, dear one on the other side of the globe for your sacrifice and being God's hands to us. Thank you, God, for doing everything You say you will do and so much more. Soli Deo Gloria!

Still leaning

2011-05-25T08:37:00.010-04:00

"Child of My love. Lean hard. Let Me feel the pressure of your care. I know your burden, child. I shaped it—I poised it in My own hand and made no proportion of its weight to your unaided strength. For even as I laid it on, I said I shall be near, and while she leans on Me, this burden shall be Mine, not hers. So shall I keep My child within the encircling arms of My own love. Here lay it down. Do not fear to impose it on a shoulder which upholds the government of worlds. Yet closer come. You are not near enough. I would embrace your burden, so I might feel My child reposing on My breast. You love Me. I know it. Doubt not, then. But, loving me, lean hard."

A year ago today I posted this poem by Octavius Winslow shared by a woman from Oregon who found our story online and became a friend and prayer warrior. We were preparing for our trip to Iowa to meet with Dr. Menezes. Danica was in so much pain, and we were desperate to find help and make a plan for treatment. If you have been following us on this journey you know what amazing things God has done in Danica's healing and in our lives. As I sit here this morning sipping my second cup of coffee, reading, praying and reflecting on God's faithfulness to us I'm tempted to become distracted by the "mess" of boxes and our looming move. Still, there is a strange peace I never would have thought possible because my heart is changed in drastic ways from so much leaning. God has orchestrated every detail of our lives. I can rest in this as surely as I can move forward confident He is holding our tomorrows.

365 days. 68,782 pageviews on Team Danica. Thousands of emails and facebook posts of encouragement. Thousands of prayers. Thousands of dollars in financial support for medical bills, travel to and from Cincinnati and for basic needs so I was able to quit work and care full time for Danica in recovery. Hundreds of handwritten letters and greeting cards. Dozens of gifts and packages. All of this love has been the ink writing our story. God also brought us through two major surgeries for me in the midst of all going on with Danica and has granted healing to my body in miraculous ways. If you would have told me what great things God was going to do for us last May I would have scarcely believed you. I still lived in a heart that sheltered impossibilities. "Now unto him that is able to do exceeding abundantly above all that we ask or think, according to the power that worketh in us." Ephesians 3:20 This is my reality now. Nothing is impossible with our God.

I had such grandiose intentions to post each day of our wish trip. I haven't given up on that, but I have slowed on posting here because it's difficult to bear my heart at such a vunerable time. Dan and I both feel some shame at becoming the ultimate cliche'. Moving back in with my parents makes us the butt of a hundred jokes. I worry about how our family will adjust. I worry about Dan and I's marriage. I worry about how long it will take to get back on our feet and have our own home again. It seems God has consistently taken away the one thing I know for sure I have idolized, my own space and things. Still, I want to tell each of you who has supported us your continued love has been the salve on our wounds. What you have done for us has not been in vain. We are still leaning hard in this next chapter. We covet your prayers as we keep our hearts open to what God would have us to do.

This past week Dan's dad got very sick and became hospitalized. We took a quick trip to Maryland to visit him and left the girls here with my parents. It was a good weekend. Curt and Eleanor are two of our favorite people in the world. They have walked closely with us since God brought our hearts and lives together. Curt was able to come home, and we spent a beautiful day on the back deck enjoying one another and feeling a particular grace that often comes when you are reminded our days are not a sure thing. The time Dan and I were able to spend with one another in the car was truly a special blessing. Every time we visit the DC area where we once lived our hearts ache a little. It feels like home in tangible and non tangible ways. This trip was no exception. We know we are meant to be here in Ohio but the dreamer in us still imagines going back to the place we feel so connected to.

As we drove up into my parent's neighborhood Sunday evening we saw our girls on the corner lot playing with the hose and water balloons and a half a dozen friends. I especially noticed Danica and the joy in her face being included in such normal childhood fun. Her new snazzy green walker sat nearby. Her knee was skinned, but I didn't panic about how or when she might have had a little fall. We pulled into the driveway covered with sidewalk chalk art and abandoned flipflops and Dan and I looked at one another and flashed heart smiles. It will be a good summer. Here is where we prayed God would carry us. There is a feeling of excitement and adventure beneath the stress of this huge change. Although there are moments of anxiety there is infinitely more peace, less fear and a true anticipation to see what God will write in the next pages. The foundation of our heart change is gratitude and remembrance of His goodness and grace to us. Yes, we are still leaning, and it's a beautiful place to rest.

(There is a long "honor roll" of pediatric Chiari heroes God has brought into our lives this past year. Won't you please pray for the Wendorff family? Their son, Brayden, will have his third brain surgery tomorrow and their son, Zachary, has also been diagnosed with Chiari and will have his first decompression on June 2nd. Please lift up Dan and Amanda, their brave parents, and the rest of the children and family who are also so greatly affected. Thank you.)

We interrupt gratitude broadcasting to bring you a note about surviving

2011-05-13T12:54:00.008-04:00

I really am going to get back to our vacation trip posts. On Mother's Day Shutterfly emailed a code for 50 free prints, and I received them today. It's so fun to see photos in print and not just digitally! It reminded me how recently we were feeling so well and having a such a great time and why vacations and rest in general are part of God's plan for us. Regular day to day life no matter what your circumstances gets tough and when you add years of extreme physical, mental, emotional and financial stress to the mix the pressure makes you want to find a permanent place to run and hide. Dan and I have said over and over since the Florida trip which was amazing and wonderful but exhausting for us, "Now WE need a vacation."

This week began with Danica waking up Sunday night with the flu bug. It involved lots and lots of throwing up and every time I said a prayer it wasn't spreading, but I knew in reality the germs were probably already doing their nasty work. Monday night we had an amazing fundraiser planned by my book club friends at The Barrel Room. All together they raised just over $800 for Team Danica. This is such a blessing as so much support has dwindled as our lives have moved on from the surgery stage, and still we have so many financial burdens. My mom came to watch the girls, and I felt super guilty for leaving Danica but also relieved to have a little breather. Danica seemed much better my mom reported when we got back late that night. At 2 am I heard the sound coming from her room every mom dreads. The vomiting began again. By Wednesday night our Laney had it, and after the intial getting sick which completely ruined her beautiful comforter and terrified us both because of the violence, she threw up every hour on the hour 6 more times. Every time I held her hair and rubbed her back and emptied the bucket and washed her face. As dawn came my fatigue spoke to me. "You're next!"

Wednesday night it came to me. I don't remember being this sick in years. It's odd to have suffered so much pain and many surgeries and lots of true physical suffering and then get the no holds barred flu. There is nothing like it. The throwing up, the fever, the aching, the way your head hurts and your eyes sting and the soles of your feet burn. Dan really had no choice but to miss work yesterday. As the only provider now in a particularly busy time at his job this was horrible timing. Classic for us, I guess. I was so sick I could barely lift my head. Last night I called my mom. Dan desperately needed to work today. I was still shivering and crying from the aching. How in the world would I care for Delaney and Danica today? Mom had a full plate. I prayed a prayer. "God, you have to get me some sleep and make me feel some better tomorrow. PLEASE."

Here it is, noon on Friday. The house is a mess. The bathroom needs scrubbed. The carpets need vacuumed. There is laundry. I am disgustingly ragged. I've yelled at the kids. I've climbed out of my stupor enough to try to deal with the week of phone messages and bills on my nightstand. Danica's therapist was out this week. I need to coordinate donating her wheelchair to a local child who needs one. Danica's walker is in at Motion Mobility. Would I like to come pick it up? Time Warner Cable called. Our service is in danger of being deactivated. (Yes, I know. I can't pay the bill online because you decided to change Xpress pay which I've used for the 3 years I've had service with you to some other log in system which doesn't recognize my old login or help me in any way get an effective new one to pay my bill. An hour later I have accomplished one thing on my list.) Cleveland Clinic has finally given me a total for what I owe. $4,225.21. This is actually less than I thought it would be, although there is over $7,000 that Summa has still not paid in the pending category. I call them. Why have I called over and over and over the past few months for a financial assistance form and cannot get this mailed to me? They are sorry. It's going out today. SIGH. I call Cincinnati Children's about a balance from last June. Why are payments being applied to later things and this account not credited so it goes to collections. This is a full time job. The kids are screaming at one another about something. Hold on. Pray. Step into peacemaker, loving mother role. I know, let's have a quiet time.

I go downstairs and for some reason my craziness kicks it up a notch, and I began taking art work off the walls. We are moving in less than a month. How in the world will I do this? The things on my walls are my treasures. I want to move them myself, in my car, and hang them up in the basement of my parent's home. They will help give me strength to do this. The words, "Keep Calm and Carry On." "Keep the Faith." "Live Well, Laugh Often, Love Much." "Love this Day." The beautiful watercolors we bought at the beach in 2006. Our gorgeous family photos taken by our friend Christina Adam at Grace Designs Photography . . . STOP. Monica. STOP. Clearly I threw up my medication. You cannot do this today. You cannot.

I came back upstairs and crawled in my bed. My muscles are still burning. My head hurts. I am still sick. Today, this is what God has for me. It doesn't look or feel like thriving, but we will survive. Dan emails. He's driving from Fairlawn to the Green office with a load of equipment. The JEEP is overheating AGAIN. This might be the end for the old car. Keep the ringer on if he gets stuck on 77 somewhere, and I have to go get him. Seriously.

I'm searching deep down for the gratitude in barely making it. I'm crying and read what I've just written. In every paragraph there is a remembrance of God's faithfulness to us. The fundraiser this week. We have not been forsaken by those around us in our continued need. The insurance we have that has covered hundreds of thousands of dollars in medical bills the past years and provided access to some of the best care in the world for Danica and I. My loving family who is willing to open their basement to us so we can try to recover from these things. A JEEP that was literally given to us two summers ago by a dear exchange student our family loved. Although we have put considerable money into keeping it going we have not had that car payment and Dan has been able to drive to work while I have had a reliable car for all the medical appointments.

Maybe this is STILL a post about gratitude. Because I am finally really grown up enough to say, "The Lord gives and the Lord takes away. Blessed be the name of the Lord." God is good. All the time. In thriving and in surviving.

Mercies in Disguise

2011-05-09T15:44:00.007-04:00

I had intended to write a post every day to catch you all up on our Disney trip but life took over a little, and I am still marinating in the joy before I reflect with words. I promise I'll get back to that soon enough. My little Danica is laying here beside me sleeping. She woke up at 5 am this morning throwing up and hasn't been able to even keep a sip of water down. I've been sitting here all day with her. After three episodes that ruined bedding I got her to control it a little more and throw up in the dreaded pink hospital basin.

My dear friends are hosting a fundraiser for Team Danica tonight beginning at 6:30 pm at the Barrel Room on Cleveland Avenue in North Canton. I have been looking forward to this for some time. I've written about these women before. They are each a gift, and I wouldn't have made it through this without God bringing them into my life when He did. I haven't washed my face or brushed my teeth or eaten. I look out at the beautiful day, and I feel no angst about God putting me here sitting vigil with my girl. Since our Florida trip I have had an overwhelming sense of God's goodness and faithfulness to Danica and our family. If you go back on this blog to a year ago. If you read through the old posts about our desperate search for help for Danica and the pain this child endured you cannot help but sing the gorgeous Laura Story song with me today. Praising God His ways are higher than ours. Praising Him that through healing our heart's eye we can see Him more clearly. Praising Him that no matter what tomorrow holds we have a greater ability to see the multitude of His mercies even when in disguise. Sing with me, won't you?

We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
What if trials of this life are Your mercies in disguise

We pray for wisdom
Your voice to hear
And we cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we'd have faith to believe

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
And what if trials of this life are Your mercies in disguise

When friends betray us
When darkness seems to win
We know the pain reminds this heart
That this is not, this is not our home
It's not our home

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You’re near
What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can’t satisfy
And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise