Saturday, June 18, 2016

On Ladybug's 2nd Cranioversary

Two years.

Two years since I handed my wailing 2 year old to an anesthesiologist in Texas.  

Two years since I watched her carried towards an operating room staffed with a minimum of 4 doctors.

Two years since I took a Dallas city bus, wearing my 8 week old baby boy, to a Waffle House, while my oldest daughter's scalp was being cut in a zig zag, her never-cut baby hair pulled in many tiny ponytails away from the incision. 

Two years since I ate two eggs scrambled, hashbrowns scattered smothered, and the best coffee on earth, while my little girl's skull was marked, cracking apart at the first incision from the pressure inside, removed, and laid on a sterile field. 

Two years since I sat in the shade of a bus station waiting to return to the hospital, while my little girl's skull was examined for the parts thick enough to be broken in half, so that the pieces could be overlapped to completely cover her brain. Parts weren't thick enough.  They'd been worn thin by the pressure from her brain.

Two years since I rode a city bus back, while my little girl's brain was covered by remodeled pieces of her skull, this time, with plenty of room for her growing brain.

Two years since I sat in that surgery waiting room, watching the screen, waiting, waiting, waiting, waiting... thinking it was much later than they'd said they'd be done.

Two years since I walked to the PICU waiting area and met her two primary surgeons.  I'll never forget asking them, "Did I do the right thing?"  


Two years ago, I was filled with such hope.  Hope that my child would be normal, pain free, that we could put all this cranio and Chiari nonsense behind us.  Hope that she'd no longer need early intervention, hope that she'd have absolutely no need of special ed, hope that she would be... normal. 

One year ago, I didn't celebrate inwardly as I thought I would on that day two years ago.  Some things had improved, but there were still things that I thought would magically go away... and they hadn't.  I sat staring at another MRI, wondering if another surgery would cure my child.  Fix her.  Make her normal.  And I dreaded the evaluation that was coming just 7 days later. Dreaded what they would say about my child that I'd moved heaven and earth for...

Today, I celebrate.  Today, I am again filled with hope.  Not a hope that my child will be normal.  She's not normal.  And I wouldn't change that for anything.  It's what makes her special.  She thinks differently than I do... than most people do... but in all honestly, she thinks better than most people do.

No, today, I am filled with hope, because hope is a gift from God.  It's not something I can muster up.  But it's something I can claim.  So this is my prayer for my oldest, my broken and mended tea cup.

 do not cease to give thanks for you, remembering you in my prayers, that the God of our Lord Jesus Christ, the Father of glory, may give you the Spirit of wisdom and of revelation in the knowledge of Him, having the eyes of your hearts enlightened, that you may know what is the hope to which He has called you, what are the riches of His glorious inheritance in the saints,  and what is the immeasurable greatness of His power toward us who believe, according to the working of His great might  that He worked in Christ when He raised Him from the dead and seated Him at His right hand in the heavenly places,  far above all rule and authority and power and dominion, and above every name that is named, not only in this age but also in the one to come.