Sunday, June 26, 2016

Finding Yourself In The Real Deep End: On Epilepsy & God

If you follow me anywhere, facebook or real life, you know that our little family has been in more hospitals and doctor appointments than I’d like to admit.  What you might not know is that our lives today feel drastically different than they did just three weeks ago.  Over the course of four months, a series of increasingly frightening episodes, several ambulance rides, two neurologists, a mis-diagnosis, and one neurosurgeon, this chronicle of events finally culminated in a four-day stay at Covenant Women’s and Children’s pediatric ICU.

Immediately, I found myself in the deep end…

Our sweet 16-month old little girl, with her bright eyes and precious dimples was experiencing generalized clonic-tonic (or grand mal) seizures. 

“Epilepsy…” I heard him say.

Disbelieving, I questioned, “epilepsy?”

Nodding, he said,  “Epilepsy.” 

And just like that, our life was altered.  This wasn’t part of the plan…not a destination we had mapped out.  But here we were.  Here we are.

We had recorded one of the episodes that had led to this particular trip to Lubbock.  That video proved to be of great help to the physicians who subsequently cared for her. 

During her episodes, as in the one depicted in the video, she stops breathing, visibly quivers, and turns various shades of purple and blue. 
    
All of the screenings and tests she endured to this point including her first three days in PICU (hours upon hours of continuous EEG monitoring with wires glued to her head, multiple CT scans, bloodwork, EKGs, etc.) had come back negative.  But that video…it solidified for the neurologists, pediatricians, and doctors that this was in fact a seizure disorder, just one without an etiology—epilepsy.  Our last day there, they did the only thing no one else had done: an extended MRI.  That MRI showed two  small spots on her brain in two different regions of her brain.  This MRI came after the diagnosis of epilepsy and its results didn’t change that diagnosis.  Naturally, we had questions; they just didn’t have any answers.  They couldn’t say what caused the spots in her brain…if they were a result, a cause, or simply an incidental finding.
 
And just like that, our life was altered ~again.

We’ve been in the deep end before. We’ve been broken.  Torn to an unrecognizable state with burdens too heavy for anyone to bear.  We’ve felt dispersed and the deep grief of loss.  We’ve “joined the club” in other areas of this life.  We’ve walked weathered and withered days.  Lost and strewn.  When our first child was born without life, our hearts were scourged and our souls bruised.  The dark days that followed were horrible and hard and awful and necessary.  There seemed to be an endless amount of pain and searching, trying to seek an answer. 

Three years out, one truth has emerged over and over and over and over again.  And it is this: Our God is sovereign.  His ways are not our ways.  So, while I may never understand or obtain answers in this life, this I do know: He is God.  He is sovereign.  He knows, He sees, He cares.  He gives and takes away…He knits us together and holds us in His hand…He alone is God.

So when the word ‘epilepsy’ was spoken, it gave way to one of the biggest silences my heart has ever known.  Scanning quickly, I find myself abruptly in the deep end.  “You Are Here” my mind’s eye reads the map. Shattered?  A little.  Taking on water?  You betcha.  Held in the Creator’s hand, knowing He knows every molecule in her tiny little body? Absolutely.  Because it’s in the moments of the broken and the burdened that we grieve how plans change, but it’s all part of His plan changing us.  

In this walk of the redeemed, submission is hard but He is ever sovereign.  When you find yourself in the real deep end and you can’t touch the bottom; when you’re drawn ever nearer, thanks be to God, because sometimes, the greatest gifts are the hardest things. 


[Please pray for us as we will be meeting with her neurologist and neurosurgeon this coming Wednesday…]

From the fullness of His Grace,
Lacey

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