Morning Prayer

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

“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

“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 . . .

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

"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

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

"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

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 as impossible 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 are possible."  Matthew 19:26

What is calling me?

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 hotel 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

“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

“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

Make a video - it's fun, easy and free!
www.onetruemedia.com