Mystery Diagnosis

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

“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

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 hard lives open to the rain of grace and let joy penetrate our cracked and dry places, let joy soak into our broken skin and deep crevices, life grows. How can this not be the best thing for the world? For us? The clouds open when we mouth 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 fill the empty places. And when I give thanks for the seemingly microscopic, I make a place for God to grow within me. This, this, makes me full, and I "magnify him with thanksgiving" (Psalm 69:30).

What will a life magnify? The world's stress cracks, the grubbiness of a day, all that is wholly wrong and terribly busted? Or God? Never is God's omnipotence and omniscience diminutive. 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 thanks we decrease and the world returns right. I say thanks and I swell with him, and I swell the world and He stirs me, joy all afoot.

This, I think, this is the other side of prayer.

This act of naming grace moments, this list of God's gifts, moves beyond the shopping list variety of prayer and into the other side. The other side of prayer, the interior of His 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

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

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

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

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

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

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

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"

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

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.