The sound my son makes when his brain launches into a grand mal seizure is terrifying—blood-curdling really. It's a shriek and a scream and a howl and a moan all at once, and this morning's was one of the worst I've heard.
Since one-thirty a.m. I'd been responding to my boy of responding kisses, when he first woke to a partial seizure, his lips pale and dusky from minutes of the shallowest breathing. I squirted a tiny bit of homemade THC tincture under his tongue and waited, hoping, for the seizure to stop. When it was over, I crawled in bed next to him—yet again—exhausted from too many days and weeks and months and years of the chronic sleep deprivation epilepsy makes certain. When Calvin woke an hour later, I gave him his benzodiazepine early, aiming to thwart what is often the inevitability of a second, more serious fit. When he woke again at four-thirty, I gave him his morning Keppra early, plus an extra half tablet for added protection. At that point Michael switched beds with me so I might get some better rest having dealt with the sleepless nights of three grand mal seizures within the span of five days.
Despite my best efforts, Calvin woke to a grand mal seizure at six-twenty, his screech piercing the quiet as if he were being tortured. I ran to his side, grabbing the vial of rectal Valium I'd set out in preparation. Michael unfastened Calvin's diaper and, as my boy spasmed, I inserted the vial's tip into his rectum and pushed the plunger dispensing 7.5 milligrams of mind-numbing gel into his body. His convulsions began slowing until his body became limp, his eyes half-mast, dull and fading.
Back in bed with him, I listened to the birds chirping as the world around us awakened. Before drifting back to sleep, my arms around my son, I worried about the thirsty trees and shrubs in the back garden. At this hour I imagine I can hear everything—birds flitting and splashing in the stone and ceramic baths, squirrels scampering up trees, bees feasting on flowers, ants marching up rough, parched bark, pollen falling on the leaves . . . Calvin's heart beating. It's during this quality of sublime quiet, if not for angst, that I can best fall to sleep.
Today my child is pale and listless, his body having been riddled by violent spasms, his brain bathed in too many potent elixirs. Perhaps he's sick, or going through a growth spurt, or suffering a wave of benzodiazepine withdrawal symptoms, or maybe adjusting to the recent and abrupt elimination of toxic levels of vitamin B6. In any case, my non-verbal, legally blind, incontinent boy and his malady are enigmas. They leave me, in the most serene of moments—which in this advancing world seem to be retreating—to worry and wonder if we will ever enjoy liberation.
Since one-thirty a.m. I'd been responding to my boy of responding kisses, when he first woke to a partial seizure, his lips pale and dusky from minutes of the shallowest breathing. I squirted a tiny bit of homemade THC tincture under his tongue and waited, hoping, for the seizure to stop. When it was over, I crawled in bed next to him—yet again—exhausted from too many days and weeks and months and years of the chronic sleep deprivation epilepsy makes certain. When Calvin woke an hour later, I gave him his benzodiazepine early, aiming to thwart what is often the inevitability of a second, more serious fit. When he woke again at four-thirty, I gave him his morning Keppra early, plus an extra half tablet for added protection. At that point Michael switched beds with me so I might get some better rest having dealt with the sleepless nights of three grand mal seizures within the span of five days.
Despite my best efforts, Calvin woke to a grand mal seizure at six-twenty, his screech piercing the quiet as if he were being tortured. I ran to his side, grabbing the vial of rectal Valium I'd set out in preparation. Michael unfastened Calvin's diaper and, as my boy spasmed, I inserted the vial's tip into his rectum and pushed the plunger dispensing 7.5 milligrams of mind-numbing gel into his body. His convulsions began slowing until his body became limp, his eyes half-mast, dull and fading.
Back in bed with him, I listened to the birds chirping as the world around us awakened. Before drifting back to sleep, my arms around my son, I worried about the thirsty trees and shrubs in the back garden. At this hour I imagine I can hear everything—birds flitting and splashing in the stone and ceramic baths, squirrels scampering up trees, bees feasting on flowers, ants marching up rough, parched bark, pollen falling on the leaves . . . Calvin's heart beating. It's during this quality of sublime quiet, if not for angst, that I can best fall to sleep.
Today my child is pale and listless, his body having been riddled by violent spasms, his brain bathed in too many potent elixirs. Perhaps he's sick, or going through a growth spurt, or suffering a wave of benzodiazepine withdrawal symptoms, or maybe adjusting to the recent and abrupt elimination of toxic levels of vitamin B6. In any case, my non-verbal, legally blind, incontinent boy and his malady are enigmas. They leave me, in the most serene of moments—which in this advancing world seem to be retreating—to worry and wonder if we will ever enjoy liberation.
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| Calvin and his Gpa |
I am sad and angry that the medical establishment cannot do anything more than this to help those like Calvin.
ReplyDeleteI'm sorry. I feel your pain, know your pain and know, too, that you and Calvin will be ok.
ReplyDelete