Day seventy-eight. I was just starting to regain some hope ... hope for a better tomorrow, hope that the magnesium citrate was working, hope that Calvin was outgrowing his seizures, hope that we could take him off of all these goddamn anticonvulsant drugs that no doubt are chaining him to this relative developmental limbo—that of an infant-toddler drunk or high on speed.
Yesterday, I’d posted a poem I’d written that morning describing a seizure. My mother-in-law called after she’d read it concerned that Calvin had had one. “No,” I answered, “but I don’t want people to forget.”
Then all the stars conspired against my boy—against us—and culminated in the ugly, dreadful, destructive black hole called seizure. He was sick with a cold. He was constipated. He hadn’t taken his lunchtime supplements, most notably his magnesium citrate, which I’d hung my hat on as the latest silver bullet. He was refusing water and food and—I discovered later—he had a temp of 101.5.
Victoria, Calvin’s behavioral health specialist, had called me in to change Calvin’s second poopy diaper after his second suppository. I entered the room just as Calvin dropped to the floor. Sprawled out at the edge of the rug, his head on the hardwood, Calvin's face was stained red as wine, all four limbs stiff and contorted like mangled driftwood. I turned his face to the side and cupped it in my palm. Victoria watched the clock and called out to me as each minute passed, my boy going breathless and blue at the tips. He felt hot, so I untied his kerchief then clamped his fleece collar between my teeth and, with my free hand, yanked down the zipper. “Victoria, will you take off his shoes?”
Time is elastic during these episodes. A minute can feel like five, especially when your child isn’t breathing. I told Victoria where the rectal Valium was and asked her to bring it to me. I remained on elbows and knees hugging my boy, kissing his hot flesh and coaching him out from the abyss. “C’mon, Calvin, you can do it!” as if he were swimming his final lap of the mile, head down to the finish, arms and legs pumping rhythmically, burning and hungry for oxygen but getting none.
His catatonia seemed to last forever, seemed different than recent seizures, all drawn out and blurry—frozen, really—which scared me even more. I worried it might never end. This could be the one, I thought. Leaning over him I placed my ear to his smooth, pale chest just above where his ribs visibly meet his sternum’s tiny thimble. “Thump ... thump,” went his heart. It felt—sounded—big and slow like an elephant’s inside his little bird body. Nearing four minutes his lips began to rouge and his thumb tried its best to meet with them. These are the signs that tell me it is ending. The rectal Valium remained in its plastic box as I peeled Calvin off of the floor and readied him for bed, his body so limp it nearly sifted through my hands.
An hour later Calvin roused from his twitching slumber, so we brought him downstairs and spooned nine anticonvulsant pills into his mouth. So dutiful, that boy, I thought. He wrapped his twiggy arms around my neck, mine nearly wrapping twice around his delicate frame, still hot. Upstairs he was restless so I climbed into bed with him and warmed his frigid feet with my hands. He fell fast asleep to Baby Mozart and the homey sounds and smells of Michael’s chicken soup in the making.
Victoria wrote to me last night. After some very kind and concerned sentiments she added, “This is a day I will never forget.” Neither will I, I thought.
And today—most regrettably—we've sprung back to day one ... again.
Please share.
Give to cure epilepsy: http://www.calvinscure.com
Yesterday, I’d posted a poem I’d written that morning describing a seizure. My mother-in-law called after she’d read it concerned that Calvin had had one. “No,” I answered, “but I don’t want people to forget.”
Then all the stars conspired against my boy—against us—and culminated in the ugly, dreadful, destructive black hole called seizure. He was sick with a cold. He was constipated. He hadn’t taken his lunchtime supplements, most notably his magnesium citrate, which I’d hung my hat on as the latest silver bullet. He was refusing water and food and—I discovered later—he had a temp of 101.5.
Victoria, Calvin’s behavioral health specialist, had called me in to change Calvin’s second poopy diaper after his second suppository. I entered the room just as Calvin dropped to the floor. Sprawled out at the edge of the rug, his head on the hardwood, Calvin's face was stained red as wine, all four limbs stiff and contorted like mangled driftwood. I turned his face to the side and cupped it in my palm. Victoria watched the clock and called out to me as each minute passed, my boy going breathless and blue at the tips. He felt hot, so I untied his kerchief then clamped his fleece collar between my teeth and, with my free hand, yanked down the zipper. “Victoria, will you take off his shoes?”
Time is elastic during these episodes. A minute can feel like five, especially when your child isn’t breathing. I told Victoria where the rectal Valium was and asked her to bring it to me. I remained on elbows and knees hugging my boy, kissing his hot flesh and coaching him out from the abyss. “C’mon, Calvin, you can do it!” as if he were swimming his final lap of the mile, head down to the finish, arms and legs pumping rhythmically, burning and hungry for oxygen but getting none.
His catatonia seemed to last forever, seemed different than recent seizures, all drawn out and blurry—frozen, really—which scared me even more. I worried it might never end. This could be the one, I thought. Leaning over him I placed my ear to his smooth, pale chest just above where his ribs visibly meet his sternum’s tiny thimble. “Thump ... thump,” went his heart. It felt—sounded—big and slow like an elephant’s inside his little bird body. Nearing four minutes his lips began to rouge and his thumb tried its best to meet with them. These are the signs that tell me it is ending. The rectal Valium remained in its plastic box as I peeled Calvin off of the floor and readied him for bed, his body so limp it nearly sifted through my hands.
An hour later Calvin roused from his twitching slumber, so we brought him downstairs and spooned nine anticonvulsant pills into his mouth. So dutiful, that boy, I thought. He wrapped his twiggy arms around my neck, mine nearly wrapping twice around his delicate frame, still hot. Upstairs he was restless so I climbed into bed with him and warmed his frigid feet with my hands. He fell fast asleep to Baby Mozart and the homey sounds and smells of Michael’s chicken soup in the making.
Victoria wrote to me last night. After some very kind and concerned sentiments she added, “This is a day I will never forget.” Neither will I, I thought.
And today—most regrettably—we've sprung back to day one ... again.
Please share.
Give to cure epilepsy: http://www.calvinscure.com
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| Soft Watch at the Moment of First Explosion, Salvador Dalí, c.1954 |
I am so sorry. So, so, sorry.
ReplyDeleteme too, E (eee) can i call you "E"? for some reason it feels endearing to me. xo
ReplyDeleteOf course you can -- I always sign emails "E."
ReplyDeleteHow's the boy doing tonight?
he's doing alright though still sick.
ReplyDeletexo
Cristy - I am so sorry I haven't responded to your thoughtful inquiries about Luella (we're still getting test results and trying to wrap our heads around everything), but i still read your post every day, and this one shattered me. I am so, so very sorry, and I wish with all my might that I could something to make it all better, I want to take it all away and never let another seizure ever happen ever, ever again. I am so, so, so sorry.
ReplyDeleteshattered me too, renee. i have been thinking of you a lot. are your ears burning? please do keep in touch. and call me ... any time, or email me which is an easy way for me to respond, too. much love to you and your family. as a friend once said after hearing some dour news, "put me in your pocket."
ReplyDelete