cross your fingers and knock on wood

After what feels like weeks, even months, we are finally getting a good soaking. It rained all night, softly drumming the roof in a way that would normally woo me to sleep if not for my restless child. I've been up since three-thirty changing wet diapers and wet pajamas, taking Calvin's temperature, wondering why he woke crying, giving him an acetaminophen suppository, crawling into bed with him, his arms clasped tightly around my neck. I'm not sure what was vexing him. My first guess was that he was primed for a seizure, today being day ten since his last grand mal.

But Calvin did not have that seizure, the one I've been expecting for the past three mornings. Perhaps he won't have it tomorrow, either; maybe he'll make it until day twelve which would be the longest grand mal-free stint he'll have had since mid March. If he goes that long I'll be willing to bet it's due to the recent dose increase in my homemade THCA cannabis oil. A week ago I increased it by twenty percent on account of the flurry of partial seizures he's been having most months and because I haven't increased it to accommodate for his weight gain in nearly a year.

Cross your fingers and knock on wood.

We continue our slow-as-cold-molasses wean of his benzodiazepine clobazam, aka Onfi. He is down to three milligrams a day from a ridiculous high of thirty-five three years ago when he was a much smaller child. With any luck Calvin will be completely off of it come this time next year. It is a scary process. I see his seizures tick up slightly in some months and I wonder if they'll continue in a worrisome trajectory. I read about new pharmaceutical drugs and wonder if we'll have to resort to them some day. I remember the crazy doses of powerful, mind-altering pharmacueticals that failed Calvin and yet impeded his development and affected his sleep, his appetite, his behavior. I recall clearly the one time Calvin said Mama, when he was eighteen months old, just before the seizures began, and I wonder, were it not for the drugs, maybe he'd have developed some language by now.

Soon, Michael will pick up the next batch of cannabis flower from our indispensable dispensary, Remedy, and sometime next week I'll begin making Calvin's next batch of THCA oil. Today, the leaden sky, though it darkens the world, sets the fall colors aglow. I'll be going up for a nap, now, and I'll fall asleep to the drumming of the rain as it comes down in sheets and squalls.

stuck inside on a rainy day

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