The screaming, which had improved some after a complete, prescribed evacuation of Calvin’s impacted bowels, had begun rearing its ugly head again. The not-knowing-why is nearly as bad as the screaming itself—both excruciating to the senses—particularly when it torments such a sweet little kid like Calvin who can’t tell us what is wrong.
Yesterday, Michael and I had taken the boat out to get some much-needed quiet away from what has become the house of poop and shrieks. The wind chopped up the bay as we skirted around hundreds of lobster buoys dotting the waters off of Mere Point—red and white striped corks bobbing to the clang of ships' bells. Michael fished for striped bass off the back of the boat while I soaked in the sun, a tie-died towel draped across my lap, watching several pairs of mallards shuttle their ducklings through the waves. Out there on the water I always feel close to completely relaxed, feel like my old self, my self before Calvin was born.
Once home I grabbed a quick shower, my hair matted and oily after not having washed it for three days, then skipped downstairs to relieve Calvin’s nurse. She’d put him in his high chair while she wrote her notes in the daily journal. Immediately, Calvin started to shriek. I held his hands softly to calm him. “Calvin’s palms are all clammy,” I remarked, “just like they were before his last seizure.” I glanced over my shoulder at the journal where on Thursday, in its margin, I’d written SUSPICIOUS OF SEIZURE TO COME. I’d expected one—even though the pattern of his recent seizures implied he wasn't yet due for one—because he’d been so goddamn wound up the past several days, running around like a chicken with its head cut off, screeching and flailing like an angry chimp. I pulled off his shoes and socks. His feet were damp, too. He continued to scream and writhe so I took him out of his high chair as fast as I could, hoping to help him release what I figured was probably some painful gas.
Our buddy Charlie had shown up just as the nurse was leaving and as Calvin was making his transition from raving lunatic to our little roving robot, wearing paths through the house in repetitive loops around furniture, up and down stairs. The three of us retired to the living room with our evening beers while Calvin crawled on the floor at my feet. Just after we’d toasted our gathering, Calvin silenced then made a couple of odd, bird-like chirps. I bent down to look at his face and watched all of the color drain from it. “Here it comes,” I said, and scooped him up and laid him on the couch on his side. Michael and I knelt stroking Calvin’s face and legs while Rudy came up and gave me a kiss. “Stay here,” I pleaded to Charlie, “I need you here.” And so he did, and he watched the whole three-minute ordeal while Calvin stiffened and convulsed and stopped breathing and turned blue and twitched and finally began coming out of it. At that point our buddy Macauley arrived and the nurse, who was gathering her things in the mudroom, came back, too.
I thought about how much I want those who I love the most to witness Calvin having a seizure. I want them to feel the intimacy of the moment—the heartache—so that when it happens again, and I share it, I can feel the solace in knowing that they, too, know. Later, Charlie followed us upstairs when we gave Calvin his seizure medicines in four spoonfuls of yogurt before putting him to bed. He had asked us about the pattern of Calvin’s seizures and I’d told him they’d been happening at exactly the same time of day for the past nine months, except this one. He wondered if the seizures were in some way like an earthquake, like a buildup of intense pressure followed by a powerful release. I explained that that’s how I’ve always likened his seizures and we wondered if perhaps there might be some ancient purpose for them embedded in Calvin’s DNA, some protective mechanism. Macauley added in his calm, thoughtful tone, “someday they’ll know.”
And I thought to myself, as the four of us sat closely in worn wooden patio chairs, I hope that 'someday' will get here soon.
Please share and help bring us one step closer to a cure for epilepsy.
Give to cure epilepsy: http://www.calvinscure.com
Yesterday, Michael and I had taken the boat out to get some much-needed quiet away from what has become the house of poop and shrieks. The wind chopped up the bay as we skirted around hundreds of lobster buoys dotting the waters off of Mere Point—red and white striped corks bobbing to the clang of ships' bells. Michael fished for striped bass off the back of the boat while I soaked in the sun, a tie-died towel draped across my lap, watching several pairs of mallards shuttle their ducklings through the waves. Out there on the water I always feel close to completely relaxed, feel like my old self, my self before Calvin was born.
Once home I grabbed a quick shower, my hair matted and oily after not having washed it for three days, then skipped downstairs to relieve Calvin’s nurse. She’d put him in his high chair while she wrote her notes in the daily journal. Immediately, Calvin started to shriek. I held his hands softly to calm him. “Calvin’s palms are all clammy,” I remarked, “just like they were before his last seizure.” I glanced over my shoulder at the journal where on Thursday, in its margin, I’d written SUSPICIOUS OF SEIZURE TO COME. I’d expected one—even though the pattern of his recent seizures implied he wasn't yet due for one—because he’d been so goddamn wound up the past several days, running around like a chicken with its head cut off, screeching and flailing like an angry chimp. I pulled off his shoes and socks. His feet were damp, too. He continued to scream and writhe so I took him out of his high chair as fast as I could, hoping to help him release what I figured was probably some painful gas.
Our buddy Charlie had shown up just as the nurse was leaving and as Calvin was making his transition from raving lunatic to our little roving robot, wearing paths through the house in repetitive loops around furniture, up and down stairs. The three of us retired to the living room with our evening beers while Calvin crawled on the floor at my feet. Just after we’d toasted our gathering, Calvin silenced then made a couple of odd, bird-like chirps. I bent down to look at his face and watched all of the color drain from it. “Here it comes,” I said, and scooped him up and laid him on the couch on his side. Michael and I knelt stroking Calvin’s face and legs while Rudy came up and gave me a kiss. “Stay here,” I pleaded to Charlie, “I need you here.” And so he did, and he watched the whole three-minute ordeal while Calvin stiffened and convulsed and stopped breathing and turned blue and twitched and finally began coming out of it. At that point our buddy Macauley arrived and the nurse, who was gathering her things in the mudroom, came back, too.
I thought about how much I want those who I love the most to witness Calvin having a seizure. I want them to feel the intimacy of the moment—the heartache—so that when it happens again, and I share it, I can feel the solace in knowing that they, too, know. Later, Charlie followed us upstairs when we gave Calvin his seizure medicines in four spoonfuls of yogurt before putting him to bed. He had asked us about the pattern of Calvin’s seizures and I’d told him they’d been happening at exactly the same time of day for the past nine months, except this one. He wondered if the seizures were in some way like an earthquake, like a buildup of intense pressure followed by a powerful release. I explained that that’s how I’ve always likened his seizures and we wondered if perhaps there might be some ancient purpose for them embedded in Calvin’s DNA, some protective mechanism. Macauley added in his calm, thoughtful tone, “someday they’ll know.”
And I thought to myself, as the four of us sat closely in worn wooden patio chairs, I hope that 'someday' will get here soon.
Please share and help bring us one step closer to a cure for epilepsy.
Give to cure epilepsy: http://www.calvinscure.com
 |
| photo by Michael Kolster |
I can tell you that seizures feel like earthquakes from the perspective of the person having them, as well. Or maybe a volcano: smelling the sulfurous fumes that signal imminent pain. The moments immediately preceding a seizure are some of the worst because you completely lack control but are still cognitively present enough to have that be painful. You know that it is up to the whims of mother nature (?), God (?), a higher deity of your choosing, whether you will plummet into the hellacious alternate world that are the hallucinations of seizures. There is nothing worse than the visceral fear that comes before the world falls out beneath your feet--in a personal disaster like a seizure or a natural disaster like an earthquake or a volcano. I'm sorry to hear that Calvin had another seizure. I will send good energy in your direction.
ReplyDelete~Julianna