I’ve often heard pregnant women say things like, “As long as it’s healthy,” or, “As long as it’s got ten fingers and ten toes.” I believe they're referring to their indifference about the child’s sex, but hearing their comments always made me think further ... and what if it’s not healthy? Well, mine wasn’t—isn’t.
I don’t often speak about the fact that one of Calvin’s many diagnoses is PDDNOS: Pervasive Developmental Disorder Not Otherwise Specified, which resides somewhere on the autism spectrum. As far as I understand it Calvin has several autistic traits, though not numerous enough to be labeled with full-blown autism.
Perhaps the reason I haven’t focused on this aspect of his condition is because his intractable epilepsy eclipses all of his other disorders, conditions and deficits. His epilepsy overshadows the fact that he is legally blind times five (his vision without glasses is 20/1000.) His seizures, and the drugs he must take for them, trump his gross developmental delays—in fact exacerbate them. His epilepsy dominates my thoughts far above any relentless reminders of his poor muscle tone, his lack of depth perception, his hypothyroidism, his slow gastric emptying, his wordlessness, his poor coordination, or the fact that he barely (if even) performs at the level of a budding toddler though he is eight years old. I worry about his silent death in the middle of the night like a new mother looks in on her infant to ensure he is still breathing.
Before Calvin had seizures we’d been crushed—wrecked—by a blindingly swift, unmerciful chain of events beginning with one horrific 32-week sonogram. That sonogram lead weeks later to an emergency cesarean and a two-month stint in the hospital trying to get Calvin to nurse or bottle-feed. After that we endured years of seemingly ceaseless, colicky shrieking, a miserable succession of missed milestones and a deeply embedded fear of what appeared to be a bleak future for Calvin and for our family.
And then it happened—like a jagged piece of black sky falling on top of us—Calvin had his first seizure. A second one followed six weeks later, then a string of successive ones lead to his diagnosis six years ago: EPILEPSY. Now my kid has a seizure disorder, I thought, and I simply tossed it—as if it were benign—on top of the existing mountain of worries, scrawled it down at the bottom of the long, crumpled list of his disabilities, pitched it in with a million disappointments, a thousand shattered dreams and as many smothered hopes.
But I quickly learned that this epilepsy thing was somehow different than all the rest of Calvin’s disabilities. It chewed them up and spit them out like some insatiable monster laying waste to everything in its path. It has all but erased—with a caustic, scouring veil—nearly every trace of normalcy, any confident strokes of hope, any residual film of a happy-go-lucky existence we’d been able to eek out of life since Calvin’s birth.
Seizure after seizure after seizure punches my little boy’s brain; drug after drug after drug sends him into vertiginous tailspins and drowns him in murky stupors. And as the weeks and months pass his developmental gap widens like an infinite canyon leaving no possibility of bridging the divide, no going back, no catching up, no do-overs. He remains in a sorry developmental limbo somewhere between infant and toddler.
Calvin: Legally blind; lacking significant white matter; ocular and cerebral visual impairments; PDDNOS; physically and cognitively retarded; Cerebral Palsy; non-verbal; disabled; incontinent; completely dependent. None of these descriptors compare to the misery that is epilepsy, which—along with its heinous treatments—makes all of these other conditions so much worse. But hey, at least he’s got ten fingers and ten toes.
I don’t often speak about the fact that one of Calvin’s many diagnoses is PDDNOS: Pervasive Developmental Disorder Not Otherwise Specified, which resides somewhere on the autism spectrum. As far as I understand it Calvin has several autistic traits, though not numerous enough to be labeled with full-blown autism.
Perhaps the reason I haven’t focused on this aspect of his condition is because his intractable epilepsy eclipses all of his other disorders, conditions and deficits. His epilepsy overshadows the fact that he is legally blind times five (his vision without glasses is 20/1000.) His seizures, and the drugs he must take for them, trump his gross developmental delays—in fact exacerbate them. His epilepsy dominates my thoughts far above any relentless reminders of his poor muscle tone, his lack of depth perception, his hypothyroidism, his slow gastric emptying, his wordlessness, his poor coordination, or the fact that he barely (if even) performs at the level of a budding toddler though he is eight years old. I worry about his silent death in the middle of the night like a new mother looks in on her infant to ensure he is still breathing.
Before Calvin had seizures we’d been crushed—wrecked—by a blindingly swift, unmerciful chain of events beginning with one horrific 32-week sonogram. That sonogram lead weeks later to an emergency cesarean and a two-month stint in the hospital trying to get Calvin to nurse or bottle-feed. After that we endured years of seemingly ceaseless, colicky shrieking, a miserable succession of missed milestones and a deeply embedded fear of what appeared to be a bleak future for Calvin and for our family.
And then it happened—like a jagged piece of black sky falling on top of us—Calvin had his first seizure. A second one followed six weeks later, then a string of successive ones lead to his diagnosis six years ago: EPILEPSY. Now my kid has a seizure disorder, I thought, and I simply tossed it—as if it were benign—on top of the existing mountain of worries, scrawled it down at the bottom of the long, crumpled list of his disabilities, pitched it in with a million disappointments, a thousand shattered dreams and as many smothered hopes.
But I quickly learned that this epilepsy thing was somehow different than all the rest of Calvin’s disabilities. It chewed them up and spit them out like some insatiable monster laying waste to everything in its path. It has all but erased—with a caustic, scouring veil—nearly every trace of normalcy, any confident strokes of hope, any residual film of a happy-go-lucky existence we’d been able to eek out of life since Calvin’s birth.
Seizure after seizure after seizure punches my little boy’s brain; drug after drug after drug sends him into vertiginous tailspins and drowns him in murky stupors. And as the weeks and months pass his developmental gap widens like an infinite canyon leaving no possibility of bridging the divide, no going back, no catching up, no do-overs. He remains in a sorry developmental limbo somewhere between infant and toddler.
Calvin: Legally blind; lacking significant white matter; ocular and cerebral visual impairments; PDDNOS; physically and cognitively retarded; Cerebral Palsy; non-verbal; disabled; incontinent; completely dependent. None of these descriptors compare to the misery that is epilepsy, which—along with its heinous treatments—makes all of these other conditions so much worse. But hey, at least he’s got ten fingers and ten toes.
To all of my readers, please share this post in honor of International Epilepsy Awareness Day. You alone can make a huge difference. We do the hard work. You just click a button.
Give to cure epilepsy: http://www.calvinscure.com
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| June 2005 |
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