11.13.2022

seize, grieve, repeat

The night's torrent had begun to wane. Its pummeling on our red metal roof had dissolved into a soft patter. The happy, excited voices of college partygoers passing by our house had trailed off just before two a.m. I had gotten up to use the bathroom and had checked on Calvin to make sure he was positioned well and covered. It seemed he hadn't moved for hours.

Not long after I closed my eyes again, my son's seizure scream cracked the silence. Despite the stormy weather, I hadn't really seen the seizure coming; it was day forty-five in a seizure-free stint, one of his longest in years.

After nearly two minutes, when the grand mal was over, I dripped two milliliters of my homemade THCA cannabis oil into the side of Calvin mouth in an effort to stave off a subsequent attack. Then I crawled into the small space next to my boy-man whose soft childlike cheeks are now regularly peppered with stubble. I held him close so I could monitor his breathing; SUDEP—Sudden Unexpected Death in Epilepsy—is a menace for young people like Calvin who have intractable epilepsy, and is thought to occur because of disruptions in cardiac and/or respiratory activity in the wake of grand mal seizures.

Regrettably, this morning Calvin suffered a repeat of yesterday's 2:00 a.m. seizure, but this time the extra cannabis oil I gave him did not thwart an ensuing one. I wish I had thought to give him an emergency dose of nasal Valium, but in my sleepy stupor it slipped my mind until the seizure was already over, when I was loathe to give it. But during his third grand mal in just over twenty-four hours, I gave him the nasal Valium to stop the cluster from evolving further.

Today, my sweet boy is a bit better than yesterday. I still don't know what caused the cluster after forty-five days of seizure freedom. Was it the storm and its low barometric pressure? Does he have an underlying illness? Was it the sucrulose (which I hadn't initially noticed) in the different brand of Greek yogurt I gave him? Is it that his body is habituating to the newest epilepsy medication, Xcopri? I will likely never know. I'll just sit here and hope, at least for now, that he doesn't have any more.

1 comment:

  1. Seizures after a period of quiet ( Calvin’s 45 days) seem even harder for me, just when I think they won’t return… I am sorry Christy. I hope he gets at least 46 days this next go round.

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