lovable son. stovetop espresso with warm milk. time by myself. a wonderful husband who totally gets me. jammy eggs on weekends. good nights' sleep. seizure-free days. mild weather. justice. white birch overlooking a green lagoon. cooking with fire. smellie, our most beloved dog, and the levity she brings us. maine, for the most part. the ability, time and place to run. feeling ever-so-slightly lighter. walking the college trails. laughing uncontrollably (sometimes at my own jokes.) steely dan. blonde redhead. david byrne. school days. teachers, ed techs, bus drivers. gifted administrators. sunlit leaves yellow as daffodils. cozy old home despite cracking plaster and creaky floors. wood fires in the stove. ambient light, mood light, candlelight and dimmers. homemade pizza. cut flowers in glass vases. hand-me-downs. quiet drives on back roads. taking in the landscape through senses and lens. making ice cream cakes with cookie crusts in a dozen tasty flavors (come try some.) friends made from strangers. walks on pennellville road. clean sheets. long hot showers. tangerine sunsets. moving films and funny movies. crusty frost on a grassy field. ghostly mists hanging out. bourbon on the rocks (within reason.) michael's mashers. bear hugs. dry firewood. witticisms. this particular community. being able to write and draw. peanut butter and raspberry jam sandwiches. the smell of sautéed onions and garlic in olive oil. ten-buck chuck taylors in assorted colors. deep conversations. buttermilk-brined spatchcocked turkey. honey-glazed, sherry carrots. relative health. meeting michael's students. thanksgiving gatherings. pumpkin and pecan pie. finnegan and his family. friends who check in with me through the grieving. talking long distance. covid rapid tests and vaccines. côtes du rhône. sunlight glinting off of wavy windows. a gifted jar of homespun applesauce and a bag of fresh mussels delivered to our door. seussian-looking trees. kind strangers. trusted friendships. relatives. devoted readers. love. music. blue jeans.
a better place
this page had been half-filled. one quote jotted down. a few thoughts tacked on. an anecdote. one metaphor. a rare triumph. a common grumbling. a millionth banal account of traipsing around the house with calvin—my agitated, nonverbal, legally-blind, seizure-racked boy, so limited and afflicted. so often unreachable. in short, nothing i had written really mattered.
hours later—our son tucked into bed and mostly calm, though ramping up—we got some tragic news. the kind no parent wants to get about beloved parents and their precious kids. practically—perhaps wholly—unfathomable. the questions whirl. what? how? why? where? when? i ask myself, why not my child? his present is so limiting. his future so bleak and uncertain. but there are no answers. all we know is bad things happen to everyone. no reprisals. no need for extra angels. no divine neglect or intervention. no mysterious plan to someday be revealed. only this: mother nature rules. unlike other people's gods, she doesn't discriminate, judge or choose. she evolves. but in harrowing times, despite her glorious days of sunshine and mist, autumn colors, raindrops, clouds, stars and sparkling waters, it's hard to say she's beautiful.
the next day, i came across and read aloud some words written by a friend i've known and loved since my early years of swimming. as usual, lidia's kindred musings resonate to the bone. i see and feel our connection:
meditating on tributaries, streams, rivers as a way of being connected to larger waters. my imagination one tiny thread leading to others, making a braid.
i delete my half-filled page of stuff that doesn't matter. instead, i think about braids and connections. about what makes this earth a better place: friends who gift their neighbors homemade food; those who show up bearing flowers; folks who donate clothes and meals and time and cash when they have little; strangers who stop to greet a disabled kid and his weary mother; friends who mix cocktails and build picnics for each other; teachers who give students extra of themselves; friends who call to catch up despite months of silence; folks who give generous embraces whether or not they've been invited; friends who note the tender bones of other's struggles and the beauty and strength borne from the burden; peculiar and pure kids like calvin, their hugs and unconditional love; certain mothers, fathers, sisters, brothers; humble, loving, gifted boys who kayak, sew, strum and fiddle.
Yesterday, the tenth day since Calvin's last seizure, he had a grand mal at three-thirty in the morning. This morning at four-thirty, after I had just drifted off since having been wide awake (for whatever reason) from midnight on, he suffered another grand mal. And while a ten-day seizure-free stint isn't that remarkable, it's better than seven days, or four days, or consecutive ones, and/or larger clusters of his brain's electric storms.
I'm glad I went for a run this morning, because the wind is high and the rain has begun falling hard, making it as good a day as any to be camped out indoors. Maybe I'll build a fire, or put Calvin in bed and take a long hot shower, have an afternoon stovetop espresso, write a little. As for Calvin, he is pretty out of it, barely able to get on and off my lap and the couch. With his head covered by his baby blanket (he loves that) it's easy to mistake him for the piles of clean laundry which seem to have taken up residence there. In-between my lap and the couch, he naps on the rug, cross-legged and folded over, his head in his hands, forehead on the floor. It's a sorry sight and reminds me of what a zombie Depakote—one of his first few drugs—made him into when he was just a tot.
Last night, having sensed the second seizure coming, I doubled Calvin's minuscule Xcopri dose with the hope of dodging the bullet (thankfully, Calvin's neurologist and his team are quick to respond to my questions, concerns and requests for help regarding bad spates and new medications.) But a single night of an increase wasn't enough to stop the oncoming storm. I hope today's major lethargy is simply his body recovering from the grand mals rather than a side effect of the new drug. But fatigue is common with most if not all antiepileptic medications, and I've read it's especially true with Xcopri, even at relatively small doses in adults far bigger than Calvin. Sigh.
Tonight, we had planned on having a few covid-negative (rapid-tested) new colleagues of Michael's join us for some of his tasty slow-cooker lasagna, my go-to spinach salad, and the remainder of my chocolate-malt-marshmallow-cookie ice cream cake, but we decided we should cancel since Calvin isn't doing too well. So instead, we'll spend the rest of this dark day camped out on the couch listening to raindrops hitting the widows, cars swishing by through the puddles, and the tick-tock and gong of the wall clock. Around five, we'll get Calvin his meds and tuck him in, make dinner and eat it in front of a movie or fire, and retire early to bed, all the while hoping the storms in his brain will ebb. Otherwise, tomorrow we might find ourselves camped out again on the couch.
the impossibility of it all
From six years ago
In a twisted sort of way, Saturday morning’s seizure brought a morsel of relief, albeit fleeting, to my child who was batshit crazy for two solid days. Like the mounting tension between wrestling tectonic plates, the pressure in Calvin's brain seems to build until it quakes, and in the temblor's wake we often find relative calm.The previous morning, we’d tested the waters of our favorite cafe in the next town over. We’ve been weekend regulars there since Calvin was a tot, ducking in and clumsily weaving our way between clusters of small, round tables and wooden chairs, overstuffed sofas and flocks of coffee lovers, many who recognize us and we them, mostly because of Calvin.
“I’ll have an iced coffee,” I said to a familiar smiling barista.
At the table behind me, Calvin spilled his cup of salted cucumber bites, then pierced the calm with his sonic siren shriek, not once, but twice.
“Okay Kid, one more time and we’re outta here,” Michael quietly warned our flailing child, who at times has little control over himself in the grip of benzodiazepine addiction and withdrawal, especially in the path of an imminent seizure.
Seconds later, we were packing up only minutes after we’d arrived, a scene we’ve played far too many times before. Michael whisked our manic kid outside. Flustered, I gathered Calvin’s containers of diced fruit and sandwich, his sippy cup, backpack, bib and rag, plus Michael’s coffee and my half-eaten cinnamon roll.
“Christy,” the cafe's owner, Tonnie, said as she approached, “don’t ever feel like you have to leave because of Calvin.” She went on to say that it’s not like he’s some kid who is simply misbehaving. “He’s part of our community.”
We hugged each other and I thanked her and told her how much her words meant to me. As I turned to go, I began to weep. Outside, I struggled one-handed to untie Smellie from a sidewalk tree when Maria, a fellow patron, came out after having seen me crying.
“Can I give you a hug?” she offered, before wrapping her thin arms around me, her delicate frame belying her soundness.
She, too, told me that Calvin was part of the Cafe Creme community and that we didn’t need to worry about his behavior.
“It must be so hard,” said Maria, once a stranger, who has watched Calvin grow up amid the crowded cafe, no doubt having seen him on days leading up to seizures and on days in the thralls of benzodiazepine withdrawal. “Relentless,” I added, mentioning his recent string of manic outbursts and the seizure no doubt on its way.
Maria helped me clip Smellie to the leash and we said our goodbyes. While crossing the street, I spotted Michael and Calvin strolling along the brick sidewalk beside a neat row of shops. I stopped, sat on a bench, tipped my head back and closed my eyes for a spell, wishing we lived a different reality.
Saturday morning's seizure didn't yield the usual long-term calm, and that night Calvin had several brief, focal seizures every hour after midnight until Sunday afternoon. An extra dose of THCA cannabis oil plus a dose of rectal Valium did nothing the quell his brain's storms.
As I write this, Michael and I are holding vigil in Calvin's darkened room, Michael in bed beside him while I perch on the changing table in what feels like Calvin's mini hospital. Inside, the air is still and close. Outside, the day is gloriously warm and sunny, not too humid. I think to myself that on a day like today, which is headed into the nineties, we should be taking our eleven-year-old son to Pleasant Pond to go swimming, or for a walk with Smellie in the cool of the woods, and perhaps to Cote's red shack for an ice cream cone. But that is the life which one must give up when parenting a chronically ill, severely disabled child who, most regrettably, is in withdrawal from a drug he probably never should have been prescribed and whose dose never should have gone as high as it did—habituation and eventual loss of seizure control one of its many heinous downsides.
Instead, as I watch my son sleep between fits of seizures, retching, and painful tears and, with the shade drawn against the sun, I dream through the impossibility of it all of what—one day—might be mine again, but without really knowing how.
it's a glorious morning when calvin wakes up on his seventh day without seizures, eats all of his breakfast, then gets on the bus heading to school. it's a glorious morning when a field sparkling with frost crunches underfoot, when trees have turned neon and the sky is blue. it's a glorious morning when it's thirty degrees and the sun is warming my face and shoulders. it's a glorious morning when i see people i like and love on the roads and fields and trails.
this morning, smellie and i went on a stroll with lauren and her dog, hola. we caught up on all things newsworthy and personal. we took a detour to an open space i rarely go. there, the marathon runner i used to see quite often on my pandemic car rides glided by and said hello. later, on the second part of an extra-long walk, i ran into a smiling tahnthawan, gave her a hug and talked with her about dogs, sparkly things, and trying something new. back at home, i marveled at the morning light splashing on the acidy, autumn foliage in my garden. any one of my few encounters were enough to make my day a good one.
after a late-morning bowl of steel-cut oatmeal with spoonfuls of honey and flaxseed meal, i drove along the back roads to michelle's house. she gave me a tour of her gardens, which are magnificent and ruggedly lovely, even as the perennials have gone to seed. then, we set out for a little jaunt, at first walking along the sleepy street that runs in front of her home. from there, we dipped into a quiet neighborhood and, at the dead end, ducked into the woods. the path, which was blanketed with fallen leaves, spilled onto a salt marsh offering a wide-open view of maquoit bay. we were surrounded by maine's astonishing beauty. warmed by the sun and standing on mats of soggy reeds and wooden planks stuck in the mud, we talked about caring for our disabled and chronically ill kids. as a hospital nurse, she shared some of her nightmarish emergency room covid stories, and we agreed that now is not the time to give up on measures meant to combat the pandemic, save lives, and suppress the emergence of more virulent strains, by getting vaccinated and wearing masks indoors. we also agreed that places like the one we were immersed in have saved us during the pandemic—that if we didn't have easy access to roam in and around wild, beautiful landscapes, our lives as caretakers during the pandemic would be much harder. i told her that the pandemic—most notably because of my daily drives along back roads with calvin when he wasn't in school—had made me more grateful for maine, its space, beauty, and its people. in essence, familiarity has endeared me to it.
i drove home with the windows rolled down. a sunny, sixty degrees feels balmy in a maine november. the breeze blowing through my hair felt exhilarating, like riding my bike as a girl. heading down the hill toward the bay, i could see forever—a rare thing in this place of few soaring vistas. i felt a sense of freedom i don't often feel anymore. i still had two hours to kill before calvin's return from school. i had time for a long, hot shower, and a chance to do some writing. having worked up an appetite, i dreamed about all the delicious leftovers we might eat for dinner—black beans and salmon, chicken curry, turkey-ricotta meatballs in puttanesca over homemade noodles—and the chocolate-malt-marshmallow-oreo ice cream cake i just made but have yet to taste. i was filled with gratitude. and i wondered, after such a glorious morning, if anything else (besides my amazing husband) might just jump right out and delight me. right then, calvin's bus pulled up to the curb, and my drooly, smiling turkey stepped off and almost hugged me.
cross your fingers, knock on wood
yesterday, calvin cried. i cried hard, too. his furrowed brow and pouty mouth are enough to slay me. it was the first time in a long while for both of us. what was the source of his misery? was it yesterday's three seizures? the rectal valium's side effects? did he have a headache? was he nauseous or crampy? i wondered if there were more seizures coming despite my best efforts to stop them. i wish i knew. living with epilepsy is hell on earth—the only hades i believe exists. i'm certain there is no merciful deity. no god pondering whether or not to save my kid from his suffering and afflictions. as calvin's mother, it's obvious. nature is simply going about its business. but i'm not offended by its indifference. the offense is in dogma which insists calvin's suffering is part of some divine blueprint. that would be sadistic.
after years of various seizure treatments—trileptal, keppra, depakote, klonopin, lamictal, zonegran, ketogenic diet, neurontin, banzel, clobazam, cbd, epidiolex, a second try of keppra—we're left with few options. but with mounting seizures, we feel compelled to try another drug, lest his fits run amok more than they already do. he's had so many these past few weeks. and he hasn't seemed very happy for years. his smiles are fleeting. a lot of the time he doesn't really seem to enjoy himself or feel good. for years he has been suffering a handful of grand mal seizures every month, plus some focal ones. he misses too much school. instead, he camps out on my lap, in his bed or on the couch. it isn't much of a life for either of us.
so, after months of research and consideration, we're going to try a novel drug. its generic name is cenobamate, its brand name, xcopri. it hasn't been around for long, but it reportedly surpasses other drugs with regard to seizure freedom. of course, like all the other drugs, the side effects are scary. so, with an abundance of caution, i'm putting calvin on half the recommended starting dose; his neurologist—who knows i'm in charge—is with me. i'm both frightened and hopeful. so many drugs have failed my child and caused a number of miserable and enduring afflictions, worst of all his wicked restlessness, which is a barrier to most everything.
yesterday, when i began writing this, i set out to craft a more poetic post. one with gorgeous, lyrical imagery, the kind that helps me escape my grief and stress. the kind that can maybe take you away to somewhere else. a dreamy post, describing back road travels, with painterly landscapes, sky and water, and the lovely friends and strangers you and i might meet there. instead, i feel it's just another entry about our hardship, worry and despair. and so at least i'll leave you with this photograph of yesterday's sunrise on a field skirted by trees bright as wildfire. from afar, i saw a ghostly mist shrouding the lawn. i meant to capture it. but the nearer i got, the more it dissolved, until finally it was gone. i'm hoping that can happen with calvin's seizures. cross your fingers, knock on wood.