3.05.2017

unrelenting

At five degrees and four o’clock this morning, I woke to Calvin’s seizure scream. It was the second grand mal in nearly as many days, following fever, vomiting and two partial seizures yesterday, plus a spate of bad days in the previous week. More violent than most, Michael and I had to work to keep Calvin's feet and hands from hitting the wooden flank of the bed, and he must have bitten his cheek or tongue because blood trickled from his lips. Since the three-day string of seizures didn’t seem to be abating despite extra cannabis oil and Keppra, we opted to give him the rectal Valium. I undid his diaper and inserted the lubed-up tip of the vial’s syringe into his rectum, then depressed its plunger. Within seconds, the benzodiazepine entered his bloodstream and bathed his brain; the spasms calmed, and not long after he drifted off to sleep.

Outside, freezing winds whipped bows into a frenzy and pressed into the seams of windows. The furnace fought hard to keep up. I crawled in next to Calvin, noting how much bigger he is getting and wondering if he has outgrown current doses of his meds. We spooned for an hour or more before I finally slept. In that hour, my mind wandered, pondering recent events. I thought about the kindness of my friend and her kids who walked Nellie in a windchill of three degrees, and of Michael’s student who took Nellie the day before in similar frigid temps. I grieved for my friend who woke up to find her precious eight-year-old daughter lifeless two mornings before, and I wondered if my boy might be next. I recalled a conversation about feeling stuck in life, backed into a corner of sorts, and wondered when I'll next escape.

We're so close to getting Calvin off of his daily benzodiazepine, yet so far away. We are within days of reducing it to two milligrams per day, down from a high of thirty-five when we began weaning it three years ago. It will take a miracle to get him off of it by my birthday in October, though I suppose anything is possible. But for now we will pause the wean for a bit so that Calvin can get his bearings.

Like winter in Maine, my boy's seizures prove stubborn and unrelenting. And just when I think harsh conditions are about to let up, we're hit with extreme temps, clusters of seizures and gale force winds. From inside our cozy home, I pine for milder weather, to be able to get outside and sink my spade into the earth and work my world into a more satisfying form. I ache to be rid of this benzo once and for all with the hope that Calvin's seizures—some of them likely due to the withdrawal—might be milder and further apart. But for now, I guess, we'll have to weather these unforgiving conditions and hunker down for a bit.

3 comments:

  1. I thought I left a comment earlier today when I read this, but maybe not. I'm with you, Christy, having much the same type mornings and nights. I wish, again, that we lived closer to one another so we could at least lie together and try to get some rest with our guy and girl.

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  2. Q: Are seizures more frequent in winter? I.e. does getting out barefoot in contact with the earth reduce some imaginary electrical charge that might contribute to triggers?

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    1. not sure. if so, probably because there is more illness in winter which lowers seizure threshold. calvin goes barefoot in warm weather, in the summer. too cold here in maine, but i could try. thank you.

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