Fear is a powerful fuel.
Anger burns fast, hot, bright. Like the dry Aspen logs in our wood-burning stove, it flames quickly, consumes everything in its path, puts out alot of heat, and swiftly dies down to blackened embers. Bitterness heats up more slowly; requiring repeated efforts to spark, plenty of offense-kindling to flame. Then, like the thick, still-damp fir logs, it burns long and deeply, fueling months, maybe years of heartache and isolation.
But fear? Fear is the most enticingly powerful fuel of all. Fear is the slow-spreading oil that soaks upward, gravity-defying, embedding every fiber of the lamp-wick. Fear burns bright and warm and steady and glowing; fuel for so many light-giving acts of service and protection and control and caretaking and people-pleasing.
Caleb was finally released from the hospital, just three months old, under the watch of a daily-visiting home-care nurse. We were well-schooled on the management of his IV PICC line, the syringes of antibiotics, dressing the stitched & restitched lacerations on his head and belly. For almost two weeks our lives rotated around the vortex of his fight-for-life.
And fight he did. I know now that all babies 'come alive' at about 12 weeks...but for us, it was divinely miraculous to watch baby Caleb gain color and health and strength. There was never a more doted upon baby! My days were devoted to gaining his smile, cuddling him close every three hours for nursing, entertaining him with brain-stimulating blocks, books, and rattles. In those days and weeks my boiling fury cooled, until only the slow-burning heat of bitterness remained.
His medical prognosis was not good. The motor and language areas of the brain had been injured from the initial hemorrhage (similar to a stroke), but the damage resulting from the massive swelling of the ventricles & resulting compression of brain tissue was incomprehensible. We were warned that he may never walk, probably wouldn't talk, and would likely never read or write. But we chose not to believe those grim facts.
Fueled by slow-burning bitterness, I was determined to prove the doctors wrong, to un-do the damage I perceived their negligence had caused. Caleb sat up early; just over four months old, and my diligent coaching paid off with his strength and ever-increasing motor skills. When he was eight months, we moved legs & arms in coordinated motion, teaching him to crawl. Across the new square of carpet in the upstairs of our old farmhouse, and away he went. He started walking only days before he turned one, just after finishing his final month's dose of anti-seizure meds, toddling gleefully in the blue pinstripe overalls his Daddy had once worn. And with each accomplishment, another flame of bitterness burned out, forgotten, doused and soothed by the beautiful, laughing boy in my arms.
Surprise-pregnant with our second, I took a leap across that chasm of faith, and chose to follow Christ, chose to recognize the gift of Caleb's life as having been saved and restored, chose to go with gratitude instead of bitterness. The miracle of his life became a miracle of new life in me, and then, welcoming another life into our family, our darling little Autumn...life became typically-full and ever-so-gratefully normal.
Caleb was four, Autumn had just turned three, and we were expecting another baby. Years gone by, and we no longer thought of Caleb as anything but perfectly healthy. He'd had some speech delays, but was more than making up for it, already writing his name, learning his letters. There was no reason to worry; not even a glance at the simmering fear, waiting, waiting for a spark.
Autumn finds him.
"Daddy, Daddy! Caleb has bubbles in his mouth!"
She is our early riser, up with the sun. Going in to awaken her best playmate. But Caleb won't wake up.
Kevin drives, I hold Caleb in my arms, both of us barefoot, clad in jammies. Kevin doesn't park, just pulls right up to the ER doors, and we race in with our boy, as he seizes, rasping, possessed by a horror no parent should ever have to witness in their worst nightmares. Autumn follows, and I try to shield her from the panic. Within seconds Caleb is surrounded by a crew of medical staff, needles, tubes, wires. Like the penultimate scene from a movie, nurses are yelling out codes, calling for paddles, intubation. And the seizing won't stop.
I ride close to Caleb in the ambulance this time also. Praying, sobbing, begging. The well-fueled fear is burning hot and strong, as I lean across his comatose body. Raw terror. Disbelief. Singular thoughts: "please live, please live, please live, please..."
The neurologist at Vanderbilt Children's Hospital tells us it was tonic-clonic seizure, 'status epilepticus.' Which means a grand-mal, or full-body seizure that went on & on & on...perhaps for hours. As a seizure continues, it spreads deeper and deeper into the brain, until finally the autonomic body functions (breathing, digestion, heartbeat) begin to shut down, then death. If we hadn't found him for another five minutes, would it have been too late? Ten minutes? And what long-term damage is done to the brain from that kind of continuous seizure activity?
Caleb doesn't come back to us for several days. And even then he is slow, stumbling, slurring. We sleep little, curled up and watchful in hospital-hard, fold-out bed and window seat, day after day, praying for healing. The doctor can't give us any promises about his full recovery. He suspects that Caleb had been having seizures in his sleep for quite some time. But we didn't know.
We didn't know.
I didn't know.
The fear bubbles and boils and wicks up into my soul, inflaming every fiber of my being. When Caleb is finally released I don't want to go home, don't want to see his blue-gingham bedroom, the crumpled sheets, the place of horror, where I did not know his suffering.
Fear flames up into regret and blame and fault and shame.
Fear fuels a wildfire-blaze of guilt and diligence and watchfulness and wakefulness.
He sleeps right between us for weeks, where we sleep little; watching him breathe, cataloging every quiver. My belly grows with our third child, but my heart is wholly focused on protecting Caleb, watching Caleb, savoring Caleb. Every moment he is out of my sight is a moment of possible regret, a moment of nightmare-visions. And despite the medications, despite the diligence, despite all my fear-fueled control...the seizures come.
Life is forever changed.
There is no normal.
There is only fear.
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click here for more on 'TheCalebMiracle' -
part 1, part 2, part 4, Watching Him, and A Freed Heart
