I shared dinner the other night with a new friend. We huddled up to the
bar of our local sushi joint and were pampered by the lovely young and
vivacious manager, wearing her slim peachy summer frock. We noshed on
sushi and tempura while drinking cold fizzy unfiltered sake from tiny
cobalt glasses. Some boisterous college students crowded around tables
behind us dunking over-sized straws into large hand painted bowls filled
with rum and fruit juice.
As the night wore on, and a green pile of empty edamame pods grew, we talked of reunions, old friends and family, then the conversation turned to our boys and eventually to the concept—the reality—of our grief and hardship. I asked her how having a child with a rare syndrome who might not live out his childhood years has changed her, knowing well my own constant and honed awareness of Calvin’s mortality. The one underlying thread that came through in her words, and was perhaps even invisible to her, was her amazing strength. Maybe she was born with it. Perhaps she acquired it in high school or college, but more likely much of it was newfound. I think the girl (and I don’t use the word in the pejorative sense that many men and women who I know use it) can kick some major ass, especially when it comes to her boy.
She went on to tell me how, before her son was born, she was quieter, maybe even timid. But she soon learned a few lessons that mothers and fathers of chronically sick kids learn when they go to hospitals and inevitably, somewhere along the way, receive poor, even negligent, treatment. She learned to advocate. She learned to be assertive. I knew exactly what she was saying. I’d been on the receiving side myself, or I should say, that poor Calvin has.
I recounted for her the first time Calvin was admitted to the NICU for status epilepticus, a dangerous, sometimes fatal, prolonged seizure or series of seizures. He was little, only two and small for his age, and an adult neurologist put him on his first anticonvulsant drug. Michael and I requested the drug literature and while reading through it, as Calvin wailed and writhed and screamed raving mad like we’d never heard him before, we realized he had been given twice the appropriate dose for his weight. We were beside ourselves. The dose was changed with no apology or recognition of error.
My friend listened to me describe the painful, bloody emergency intubation that my babe had to endure without anesthesia, while he was breathing. His respiration had temporarily stopped during a seizure, which is not uncommon, but had resumed and yet the intubation was deemed urgent by a hospital physician who had never met Calvin before and thus it was carried out amidst his thrashing and terrified shrieks of pain. I told her about the time it took two nurses and a doctor over thirty minutes to successfully insert an I.V., during one of Calvin’s prolonged seizures, in order to administer emergency medication to stop it. Why they didn’t jab an intramuscular drug into his thigh (which then I didn’t know was possible or I would have asked for it) to this day I do not know. Upon first arriving at the emergency room I had apprised the medical staff that Calvin was a “hard stick” so to please give us their most talented IV specialist. My request, for whatever reason (lame) was not heeded (and never has been in subsequent circumstances) and Calvin suffered—greatly—a forty-five minute seizure, far longer than he might have if the drug had been delivered in a timely manner.
So, my friend and I exchanged horror stories about our underdog kids who can’t walk by themselves and can’t talk, whose health is significantly compromised, whose lives seem to balance on a thread—from here to tomorrow—perhaps equal to our own strength (luckily we and the boys are resilient as spiders silk, the strongest fiber known to man.) These stories might have seemed completely inconceivable except for the fact that we have lived them. As I sat next to her at the bar, looking into her clear, bright eyes, her sassy drop earrings jangling to and fro as she bobbed her curly head, I realized that I was looking into a dark mirror, one that looked back at me and said, yes, I know ... I know. And as we left the restaurant, our bellies full and warm, my adrenaline pumping, all I wanted to do was to go out there into the world and kick some major ass.
As the night wore on, and a green pile of empty edamame pods grew, we talked of reunions, old friends and family, then the conversation turned to our boys and eventually to the concept—the reality—of our grief and hardship. I asked her how having a child with a rare syndrome who might not live out his childhood years has changed her, knowing well my own constant and honed awareness of Calvin’s mortality. The one underlying thread that came through in her words, and was perhaps even invisible to her, was her amazing strength. Maybe she was born with it. Perhaps she acquired it in high school or college, but more likely much of it was newfound. I think the girl (and I don’t use the word in the pejorative sense that many men and women who I know use it) can kick some major ass, especially when it comes to her boy.
She went on to tell me how, before her son was born, she was quieter, maybe even timid. But she soon learned a few lessons that mothers and fathers of chronically sick kids learn when they go to hospitals and inevitably, somewhere along the way, receive poor, even negligent, treatment. She learned to advocate. She learned to be assertive. I knew exactly what she was saying. I’d been on the receiving side myself, or I should say, that poor Calvin has.
I recounted for her the first time Calvin was admitted to the NICU for status epilepticus, a dangerous, sometimes fatal, prolonged seizure or series of seizures. He was little, only two and small for his age, and an adult neurologist put him on his first anticonvulsant drug. Michael and I requested the drug literature and while reading through it, as Calvin wailed and writhed and screamed raving mad like we’d never heard him before, we realized he had been given twice the appropriate dose for his weight. We were beside ourselves. The dose was changed with no apology or recognition of error.
My friend listened to me describe the painful, bloody emergency intubation that my babe had to endure without anesthesia, while he was breathing. His respiration had temporarily stopped during a seizure, which is not uncommon, but had resumed and yet the intubation was deemed urgent by a hospital physician who had never met Calvin before and thus it was carried out amidst his thrashing and terrified shrieks of pain. I told her about the time it took two nurses and a doctor over thirty minutes to successfully insert an I.V., during one of Calvin’s prolonged seizures, in order to administer emergency medication to stop it. Why they didn’t jab an intramuscular drug into his thigh (which then I didn’t know was possible or I would have asked for it) to this day I do not know. Upon first arriving at the emergency room I had apprised the medical staff that Calvin was a “hard stick” so to please give us their most talented IV specialist. My request, for whatever reason (lame) was not heeded (and never has been in subsequent circumstances) and Calvin suffered—greatly—a forty-five minute seizure, far longer than he might have if the drug had been delivered in a timely manner.
So, my friend and I exchanged horror stories about our underdog kids who can’t walk by themselves and can’t talk, whose health is significantly compromised, whose lives seem to balance on a thread—from here to tomorrow—perhaps equal to our own strength (luckily we and the boys are resilient as spiders silk, the strongest fiber known to man.) These stories might have seemed completely inconceivable except for the fact that we have lived them. As I sat next to her at the bar, looking into her clear, bright eyes, her sassy drop earrings jangling to and fro as she bobbed her curly head, I realized that I was looking into a dark mirror, one that looked back at me and said, yes, I know ... I know. And as we left the restaurant, our bellies full and warm, my adrenaline pumping, all I wanted to do was to go out there into the world and kick some major ass.
Originally published 09.12.11
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Give to cure epilepsy: http://www.calvinscure.com
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| photo by Michael Kolster |
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