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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