It’s indescribable, really. It smells akin to some sickening mixture of smoke, sweet and shit. The stench I speak of is from a gel benzodiazepine, which seems to seep out of my boy’s skin, the Diastat—rectal Valium—that I sometimes have to give to Calvin when he suffers clusters of seizures.
I loathe to use the stuff on him. Though it does a decent job of stopping the clusters, it seems to give him headaches, it disturbs his sleep and causes its own withdrawal symptoms. Experience tells me, however, that if I don’t administer it after the first or second seizure he’ll have at least one more, particularly if the first one happens well before twelve a.m. like it did the other night. Having said that, I’m still experimenting with different methods to avoid its use. Thursday night, after his first seizure, I tried giving Calvin extra doses of THCA cannabis oil, which seemed to work to delay the onset of the second seizure until almost dawn.
After we had put Calvin to bed, I took a walk in the garden at dusk, the baby monitor in place, hung from a ribbon slung around my head. When the evening light is right this time of year, when a low cloud cover brightens a twilight sky, rhododendron blossoms glow in drifts of lavender, cream, fuchsia and pink. As I strolled, birds flit from shrub to tree before retreating to their nests. And though it was hidden, I knew the full moon was on the rise somewhere in the east.
Just as a whiff of viburnum pricked my senses, I heard an awful gasp. I sprinted to the house.
“Seizure!” I cried to Michael, who was in the kitchen cleaning up.
I mounted the stairs by twos and found Calvin stiff and shaking, his arms bent into ghastly claws, his feet kicking the side of the bed, his eyes wide open as if he'd seen a ghost. Michael swooped in to hold and kiss our boy, tenderly urging him out of submission, while I buffered Calvin's feet, then reached in and held a vial of frankincense oil under his nose. The convulsions waned then stopped, and I rubbed a bit of the oil on the bottom of his big toes because I’d read somewhere this can help abate fits.
It was only eight o’clock, which meant there would no doubt be one or two more grand mal seizures before morning, perhaps when the full moon would be lurking overhead. I calmed myself so I could think. It had been only an hour or so since he’d gotten his arsenal of bedtime medicines and cannabis oils. Hesitant to dope him up too much, and before he fell back to sleep, I gradually syringed a conservative dose of cannabis oil into his mouth and watched him swallow. Michael tucked him in while I readied another milliliter for midnight plus another half to give to him four hours later.
Though well delayed, the seizure came anyway, at four a.m., just after his last dose of THCA oil, so we were forced to give Calvin the Diastat or risk a third grand mal.
Throughout the next day I smelled the Diastat exiting his body, which always nearly makes me sick, as if it were the smell of death.
Both Calvin and I took naps that day. Outside in the sun flower buds plumped, ones that weren't open just yesterday were blossoming, and jays sat on their speckled eggs. When I woke from my nap, I realized Calvin had been unusually quiet for over an hour. Gazing out at trees which had just begun to leaf, I listened for him and thought of several friends' children who died in their early teens, some in their sleep. I wondered if Calvin would wake up and, if not, how my world might be. I wondered, too, if there will come a day when he doesn't have any seizures, when he'll be off of his benzodiazepine, when he'll be less agitated, less deranged, less obstinate, smile more often and be better engaged with his world. I have my doubts; after all these years of the same old same old, the future isn't looking very good.
Then I sniffed the scent of viburnum again, which was drifting through an open window, its flowers just beginning to unfurl in the last day or so. If one attends closely, I realized, the garden looks and smells so different with each passing day. I was reminded of something I'd read earlier: you never know what's coming tomorrow. And just as I closed my eyes for another quick spell, I heard Calvin stirring in his bed.
I loathe to use the stuff on him. Though it does a decent job of stopping the clusters, it seems to give him headaches, it disturbs his sleep and causes its own withdrawal symptoms. Experience tells me, however, that if I don’t administer it after the first or second seizure he’ll have at least one more, particularly if the first one happens well before twelve a.m. like it did the other night. Having said that, I’m still experimenting with different methods to avoid its use. Thursday night, after his first seizure, I tried giving Calvin extra doses of THCA cannabis oil, which seemed to work to delay the onset of the second seizure until almost dawn.
After we had put Calvin to bed, I took a walk in the garden at dusk, the baby monitor in place, hung from a ribbon slung around my head. When the evening light is right this time of year, when a low cloud cover brightens a twilight sky, rhododendron blossoms glow in drifts of lavender, cream, fuchsia and pink. As I strolled, birds flit from shrub to tree before retreating to their nests. And though it was hidden, I knew the full moon was on the rise somewhere in the east.
Just as a whiff of viburnum pricked my senses, I heard an awful gasp. I sprinted to the house.
“Seizure!” I cried to Michael, who was in the kitchen cleaning up.
I mounted the stairs by twos and found Calvin stiff and shaking, his arms bent into ghastly claws, his feet kicking the side of the bed, his eyes wide open as if he'd seen a ghost. Michael swooped in to hold and kiss our boy, tenderly urging him out of submission, while I buffered Calvin's feet, then reached in and held a vial of frankincense oil under his nose. The convulsions waned then stopped, and I rubbed a bit of the oil on the bottom of his big toes because I’d read somewhere this can help abate fits.
It was only eight o’clock, which meant there would no doubt be one or two more grand mal seizures before morning, perhaps when the full moon would be lurking overhead. I calmed myself so I could think. It had been only an hour or so since he’d gotten his arsenal of bedtime medicines and cannabis oils. Hesitant to dope him up too much, and before he fell back to sleep, I gradually syringed a conservative dose of cannabis oil into his mouth and watched him swallow. Michael tucked him in while I readied another milliliter for midnight plus another half to give to him four hours later.
Though well delayed, the seizure came anyway, at four a.m., just after his last dose of THCA oil, so we were forced to give Calvin the Diastat or risk a third grand mal.
Throughout the next day I smelled the Diastat exiting his body, which always nearly makes me sick, as if it were the smell of death.
Both Calvin and I took naps that day. Outside in the sun flower buds plumped, ones that weren't open just yesterday were blossoming, and jays sat on their speckled eggs. When I woke from my nap, I realized Calvin had been unusually quiet for over an hour. Gazing out at trees which had just begun to leaf, I listened for him and thought of several friends' children who died in their early teens, some in their sleep. I wondered if Calvin would wake up and, if not, how my world might be. I wondered, too, if there will come a day when he doesn't have any seizures, when he'll be off of his benzodiazepine, when he'll be less agitated, less deranged, less obstinate, smile more often and be better engaged with his world. I have my doubts; after all these years of the same old same old, the future isn't looking very good.
Then I sniffed the scent of viburnum again, which was drifting through an open window, its flowers just beginning to unfurl in the last day or so. If one attends closely, I realized, the garden looks and smells so different with each passing day. I was reminded of something I'd read earlier: you never know what's coming tomorrow. And just as I closed my eyes for another quick spell, I heard Calvin stirring in his bed.
I must have failed to complete the comment process in my post, but I wanted to say you have revealed some prime value in stopping to smell the roses.
ReplyDeleteWe all need to be reminded to do that when the path gets thorny... and I am so glad you still have that capacity in you, Christy, despite the challenges you live with. Smell them, look at them, feel them, hear them in the breeze, taste them, photograph them, write poems and stories about them, Celebrate them! They keep us all grounded!