When I got up last night to check on Calvin around eleven, I looked out the window and saw Orion low in the sky, his toe touching the tops of the trees in my friend Woody's yard. I used to toy with envisioning Orion, a mythological Greek hunter with a shield and sword, as a protector of children like Calvin. But those kinds of imaginations are inventions with no agency. Now I see Orion for what it is: a beautiful and familiar constellation in a vast, enigmatic, indifferent yet magnificent universe.
Shortly after I fell back to sleep I heard Calvin shriek. I got to him quickly as I could and held him as he seized. When it was over, I gave him some extra homemade THCA cannabis oil, syringing it bit by bit into the inside pocket of his cheek so he wouldn't choke. Then, I crawled into bed with him. His heart was pounding so hard it felt like it was bulging between his ribs. Thankfully, within twenty minutes it had calmed, and he slept peacefully.
I laid awake for awhile, feeling him breathing. I thought about all that has changed in the past year or so. Calvin doesn't rouse in a panic in the wake of his grand mals anymore. He used to regularly spring up about thirty minutes after his fits and spend the next several hours perseverating—hyperventilating, finger snapping, humming, pressing his eyes and incessantly patting his bed—all the while his heart racing. Now, he rarely, if ever, does any of it.
And there are other visible differences in my kid. He hasn't had a focal seizure since the end of November, but he's had more back-to-back grand mals of late. His behavior—on less Keppra, and two-plus years having passed since his last dose of benzodiazepine—is way better. He's calmer, more focused, cuddlier, more compliant. He goes to bed a bit faster on most nights and sleeps better, generally. He can get into the car nearly by himself now. He's staying at the table more patiently when fed. More often, he sits in our laps longer, and sometimes lets us read to him.
After awhile, I got back into my own bed and fell asleep again. A few hours later, however, and despite the extra THCA oil that I'd given him, Calvin had a second grand mal. Again, I held him as he seized and slept with him when it was over. At four o'clock he arose, sat up and wouldn't settle. Non-verbal, my kid is as enigmatic as the universe. So as an experiment, I asked him if he had a wet diaper. He was silent, but rubbed the side of his head. I asked him a second time and waited for a response. Again, he rubbed his head. Then I asked him if his head hurt, and he went, "Unn," so I gave him an ibuprofen and a few gulps of water from his sippy-cup, plus his morning Keppra, with the hope of preventing a third seizure. From then on he slept.
I used the bathroom one more time before retiring to my bed. When I looked out the window the sky was visibly different. Orion appeared much smaller and had sunk halfway into the horizon. In its place was another constellation, unfamiliar to me, though bright and bold and beautiful, and just as magnificent and indifferent.
Shortly after I fell back to sleep I heard Calvin shriek. I got to him quickly as I could and held him as he seized. When it was over, I gave him some extra homemade THCA cannabis oil, syringing it bit by bit into the inside pocket of his cheek so he wouldn't choke. Then, I crawled into bed with him. His heart was pounding so hard it felt like it was bulging between his ribs. Thankfully, within twenty minutes it had calmed, and he slept peacefully.
I laid awake for awhile, feeling him breathing. I thought about all that has changed in the past year or so. Calvin doesn't rouse in a panic in the wake of his grand mals anymore. He used to regularly spring up about thirty minutes after his fits and spend the next several hours perseverating—hyperventilating, finger snapping, humming, pressing his eyes and incessantly patting his bed—all the while his heart racing. Now, he rarely, if ever, does any of it.
And there are other visible differences in my kid. He hasn't had a focal seizure since the end of November, but he's had more back-to-back grand mals of late. His behavior—on less Keppra, and two-plus years having passed since his last dose of benzodiazepine—is way better. He's calmer, more focused, cuddlier, more compliant. He goes to bed a bit faster on most nights and sleeps better, generally. He can get into the car nearly by himself now. He's staying at the table more patiently when fed. More often, he sits in our laps longer, and sometimes lets us read to him.
After awhile, I got back into my own bed and fell asleep again. A few hours later, however, and despite the extra THCA oil that I'd given him, Calvin had a second grand mal. Again, I held him as he seized and slept with him when it was over. At four o'clock he arose, sat up and wouldn't settle. Non-verbal, my kid is as enigmatic as the universe. So as an experiment, I asked him if he had a wet diaper. He was silent, but rubbed the side of his head. I asked him a second time and waited for a response. Again, he rubbed his head. Then I asked him if his head hurt, and he went, "Unn," so I gave him an ibuprofen and a few gulps of water from his sippy-cup, plus his morning Keppra, with the hope of preventing a third seizure. From then on he slept.
I used the bathroom one more time before retiring to my bed. When I looked out the window the sky was visibly different. Orion appeared much smaller and had sunk halfway into the horizon. In its place was another constellation, unfamiliar to me, though bright and bold and beautiful, and just as magnificent and indifferent.
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| Photo by P-M Heden |
Thanks Christy.
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