When you live with fear long enough it becomes your new normal.
Fear can be useful, in lots of attractive ways. Fear burns in us to bring diligence, self-control, perfectionism, caretaking, people-pleasing...so many highly-performing characteristics.
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Caleb was officially diagnosed with epilepsy when he was four and a half. The relentless search for just-the-right-drug began then, and continued for years. In the early months we had to take him in for bloodwork every two weeks, to check his liver function and medication levels. Think for a minute, about taking your four-year-old in for shots or immunizations. Try to imagine an IV blood draw, every two weeks, for month after month after month. I think I cried as much as Caleb did. Probably more.
The name 'Caleb' means 'courageous, devout, faithful, loyal.' The little boy before us became the Courageous Caleb he was created to be. No parent would wish such a trial on their child, and yet, the trial itself shaped our son into something ever-so God glorifying.
In time, the precautions and blood draws and lifestyle changes and watchfulness and ER visits became normal. The fear-fuel burning in me manifested itself in a variety of attractive and revolting ways: anorexia, overprotective mothering, people-pleasing, perfectionism, isolation. And like a roller-coaster that must come plummeting down, every few months I would crash with exhaustion, sorrow, blaming.
After ten years of marriage, the strain of these and other near-intolerable circumstances left Kevin and I barely clinging to our wedding vows. In a last-ditch attempt to hold our family together, we sold half our belongings, packed into a Uhaul, and headed west. In early September 2003, we landed in Woodland Park, Colorado, stepped out in faith, utterly unaware of God's Promised Land before us.
It was here in Colorado that we stumbled into the care of neurologist Dr. Laoprasert, with Denver Children's Hospital. Despite medications, the sub-clinical, intractable, nighttime seizures continued to sandpaper-away Caleb's motor and language functions. He was deteriorating before our eyes; limping on his right side, losing right-arm function, becoming increasingly slow-to-respond. Dr. Laoprasert immediately set about weaning Caleb from his dangerously high dose of Clonazepam, and started him on a newer, safer medication. He ordered weekly therapy sessions for Caleb, where we learned all about the amazing world of vestibular processing, right-brain/left-brain communication, and ways to help Caleb's brain cope and recover. And then it was testing...and testing...and more testing. For the first time in 10 years we started finding answers, started seeing hope for healing, started believing Caleb might find freedom from epilepsy.
The surgical option before us was gruesome: remove a golfball-size portion of Caleb's brain, central to the sparking of his unremitting seizure activity. It seemed unfathomable, to have a chunk of his brain removed, with no guarantees about how his body would recover or react. Free from seizures, but at what cost? Partial paralysis on his right side? Would he have to learn how to talk and read and write all over again? And yet, the long-term prognosis, with unrelenting seizure activity, was even more reprehensible.
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Early fall, 2004. We're back at Denver Children's Hospital for another week-long seizure study. This is the third and final piece of the puzzle to prepare for surgical resectioning: pinpointing within millimeters, the portion of brain that is sparking Caleb's seizure activity. Our surprise 4th-baby grows in my belly, and yet again, I find myself focused wholly on protecting Caleb, caring for Caleb.
He sprawls little-boy-lanky on the hospital bed next to us, scalp wired with EEG leads, IV in forearm, monitors beeping steadily above his head. He is red-eyed with sleep-deprived exhaustion, going on day seven of 2-3 hours of sleep per night, sans medication, as we hope for one more seizure that can then be monitored and tracked and charted. In an ironic twist, the seizure activity we have prayed against for a decade, is now what we ask God for, to bring an end to this wearying trial.
But the seizures don't come.
Desperately we pray;
"Your will be done, Lord...God just bring us thru...please bring healing...however, whatever, just please, Jesus, heal our boy..."
And the seizures don't come.
Despite abnormal EEG's - despite medical prognosis - there are no more seizures.
I'd love to tell some miraculous story of burning-bushes that speak, flashes of light, and divine, immediate healing. But it wasn't like that. It was slow. And uncertain. And full-of-fear.
Since that week of testing in 2004, we have never seen Caleb have another seizure. His check-ups revealed gradual, consistent improvement, both medically and clinically. In 2008 we were astounded with a near-normal EEG. Dr. Laoprasert scheduled a gradual weaning from all anti-seizure meds, and for the first time in a decade, we discovered a witty, fun, astute, un-medicated, seizure-free Caleb. In 2009 I was giddy as the technician stared at the screen mid-test, questioning why Caleb was even having the EEG...because it was completely normal.
Why was Caleb healed?
I wanna toss out all those platitudes: "By the grace of God! In His mercy! By His stripes we are healed!" But why then aren't all children healed? Why do some die? Why do some continue to suffer?
I don't have any answers; I've not gleaned any great wisdom.
I'm just grateful. So grateful.
Fear is still my enemy.
Caleb's miracle-journey is not yet over.
Today, we are at Denver Children's Hospital, for yet another surgery.
We pray, we cry, we beg.
And we trust. There is no other way. Caleb is His child, and Caleb's days and moments and suffering and overcoming are all in God's Hand. So we move forward, beating back fear, praising in the midst of the cardiac waiting room, no matter the outcome.
No matter the outcome.
This I know:
Caleb has been a glory-of-God miracle.
Caleb is a glory-of-God miracle.
No matter the outcome, Caleb will be a glory-of-God miracle.
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click here for more on 'TheCalebMiracle' -
part 1, part 2, part 3, Watching Him, and A Freed Heart
If you'd like to follow Caleb's journey with us this week, click here for his 'CalebUpdates' care pages:
http://www.carepages.com/carepages/CalebUpdates
