the free feeling of traipsing down the middle of a deserted road. the sound of snow and ice crunching underfoot. standing in the the center of that field alone. the shine off its glossy surface. thinking of the pennellville meadow sheathed in ice, its grassy tufts like waves in a frozen ocean. the hollow knock of a woodpecker disturbing the quiet. the sting of frigid air in my nose. friends calling and knowing they can cry on my shoulder. long good talks with sisters and brothers. post-booster, post-fever, post-seizure child spending most of the day napping in my lap, keeping me warm. seeing in-laws in their silly glasses on zoom. making a killer coffee oreo cookie irish cream chocolate fudge brownie ice cream cake for after christmas dinner. getting lost in the rolling flames of a fire in the wood stove. the sweet richness of bourbon eggnog topped with sugar-laced whipped egg whites and nutmeg sprinkles. friends and neighbors dropping by with goodies galore. smiles, gifts, visits and messages from once-strangers. so many beloveds. dream of our dear Arnd alive and well and among us. hearing from his parents the next morning. woody's kin dropping off a holiday care package in his absence. writing at the butcher block table as my husband busies himself in the kitchen. rosemary rack of lamb about to go in the oven. the roundness of a french horn with the charm of a harp. looking forward to watching the 1951 version of dickens' a christmas carol. all dressed up, no place to go.
on pandemics, mindfulness and mother nature
too many close covid contacts compelled me to yank calvin from school. wanna get him his booster soon as possible. his immunity has dwindled over so many moons. don't want him to catch omicron or delta—or other worse versions that might yet emerge. he already has too many woes. want to avoid the hospital at all costs, too. don't want to risk infecting others. wish that were the way everyone rolled.
today is the winter solstice. i can feel it in my bones—the calm. the chill. still, these are some long-ass short days taking care of calvin alone. not much to do when it's so damn dark and cold. and now the ground is covered in snow. means we're mostly stuck indoors. means i have to practice mindfulness. focus on little things—the curve of a glass or face, the color of the sky, the smell of baking bread, the sound of creaky wood floors—and on gratitude. have to tread water a little bit longer. hold onto hope. stay upbeat. thankfully, i'm pretty good at that, though calvin's recent spate of day-long mania makes it difficult. at least at night he's sleeping.
for fourteen months i did it. at the start of this damn pandemic. same old same old—hung out with calvin at home. he can't do remote school. can't use a screen. can't watch videos. can't read books. can't play with toys. can't sit still. i feed him and dress him and bathe him and potty train him. wipe him up, too. regrettably, you've heard it all before. no teachers or aides or nurses to take up the slack. only michael and his fabulous companionship and cooking. thank goodness. something i try to forget: even when there's no pandemic, our lives are hardly different.
i turn to things that help pass the time: long car rides on back roads, baths. about all i can think of. while driving, i listen to music. note the changing light and weather and landscape. see the nuance. compare it all to last year, my memory of it. see passersby braving the cold. they sometimes smile at me and wave, make my day in doing so. i try to find delight in getting all bundled up. laugh at myself sloshing around in my oversized boots (men's treads are better.) would rather romp in sneakers, jeans and t-shirt. even in winter—perhaps especially—runs and walks in the morning and evening with smellie do me good. out where the sky is big and the sun is coming up or setting. casting long shadows. painting clouds sublime colors. out where i feel my smallness most. like the first star appearing at twilight, only tinier. and yet part of something far larger and unknown. long-ass days are good for pondering this sort of thing. it's fine there are no answers, though i'm not really looking. wonder keeps me curious and humble.
a friend shared this poem with me when she saw my photo below. and though i'm no believer in the god of organized religions, i can get behind and into mother nature. so i think of "her"—the universe and all its forces—when reading it, praising only nature. and in the spirit of mindfulness and beauty, i'll pass this morsel on to you:
back at home and on the road
i wish i knew you better. though perhaps i did without really knowing it, until now, maybe. until having been compelled to think of you more deeply since your passing last month, which was far too soon. i wish i had carved out more time to be with you. in the same way i wish i could with my own son, i wish i knew your innermost feelings, hopes and dreams. in each case, that will never be. still, i miss you, and the world misses you, too, finnegan.
i think i knew you mostly through knowing your people. like your kin, you had a special kind of pull. like gravity on tides. a vessel's longing for water. a river to open ocean. waves yearning for the shore. and, like your family, you were a poem.
like your mother, my dear friend lucretia, you were generous. blushing. earnest. nurturing. hard-working. beautiful. welcoming. creative. down to earth. maverick.
your father, michael, was in you too. you were gifted. adventuresome. athletic. artistic. handsome. industrious. clever. funny. loyal.
like your siblings, seamus, maeve and daire, you were an old soul from the beginning—wise beyond your years. genuine. kind. humble. pure. accepting. thoughtful. intelligent. insightful. tender. caring. exceptional.
and, yes, you were exacting too.
yesterday, at your memorial, hot apple cider was served in paper cups under a peaked white tent atop a slope. school buses parked aside the field having just shuttled scores of mourners eager to celebrate and remember you. men in woolen shirts and boots gently poured watery rings around the modest bonfires they'd built, the crackling timber turning satin-black and ashy white. smoke and its consoling aroma lingered before dissolving into the chill. as the ceremony got underway, hundreds of folks began streaming downhill toward the podium. from the center of the crowd, i waded crosscurrent hoping to reach the edge, slowly weaving between people as best i could to avoid disturbing the flow.
i stopped alongside a low wire fence flanking a field of windswept grasses. the crowd stood silent on three sides of me, a sea of winter jackets, and hats with fluffy pompoms. there were people of all ages. many of them dear to me, though most of them unknown. as a dozen or so of your closest friends shared stories of knowing and loving you, finnegan, i listened while sometimes gazing out over the pasture. i imagined you running its length as a child. perhaps doing cartwheels and somersaults on days like these. at that moment, the meadow—which just three weeks earlier had been shrouded by a river sky—resembled a vast channel. its tufts of windblown straw appeared as gently rippling rapids, though golden, each wave cresting in the same direction—downstream. thirty minutes on, i glanced back over the field to see the half-moon rising in the southeast. a tiny cloud or two drifted amid the liquid blue sky, the sun nearly kissing the earth as if mother and child. thinking of you, finnegan, i was moved. bowing my head, tears dropped onto soggy reeds beneath my feet as i imagined standing in a river next to you.
at your gathering, a wise, gentle woman said that grief's element is water. i don't know if that's true. but it makes sense to me, finnegan. grief and loss, like water, can knock us down like a breaker in the sea. i know. it can move us and move through us, like a drink. i know. and as tides and rivers are wont to do, grief can bring us somewhere new. i know well that truth; my own river—its headwaters born with calvin—continues. but if anyone had the ability to move others in life and in passing, clearly, finnegan, it was you.
It's not an email any parent wants to receive: its bold, underscored letters and bright yellow highlights; its list of symptoms; its advice to call 911 in case of any serious signs such as confusion, pressure or pain in the chest, blue-gray-tinged skin, lips and nail beds, inability to wake or stay awake.
Yesterday's message came from my son's high school, notifying me that Calvin was identified as a close contact to a Covid-19 case the day before. I don't know if the infected person was a classmate, a therapist, or an aide in his classroom or someone on the bus. Due to privacy concerns, the school nurse can't tell me. What I hope is that the infected person wasn't responsible for feeding Calvin or being with him for the entire day.
I forwarded the email to Michael with a one-word intro—fuck. I'm a bit worried, because while Calvin is fully vaccinated, he hasn't gotten his booster shot yet because, despite his list of comorbidities, especially epilepsy, he isn't old enough and won't be eighteen until February. His second shot was last April, so his immunity has very likely waned. I've kept questioning why he can't—shouldn't?—get a booster yet. Word remains he has to wait.
When I called my friend to cancel our long-overdue plans to bring her and her husband dinner tonight, my voice began to stammer. I was able to hold it together during our conversation, but it was hard to keep my imagination from drifting to little Charlotte Figi, my friend's daughter who was in many ways like Calvin, most notably her relentless and stubborn seizures. Her entire family got Covid-19 in the early months of the pandemic. Everyone recovered except for Charlotte. She was just a teen, a twin, so sweet, mild, innocent and beloved.
I gathered my thoughts, then began writing messages—to Calvin's teacher, to his former aide, Mary, who was going to take care of Calvin while we went to our buddies' house with dinner, to some out-of-town friends—distant relatives, really—who were going to drop in for supper on Friday after not having seen them for years, to four of our favorites who were staging a home invasion for this Sunday, complete with all the dinner fixings save the coffee-Oreo-chocolate-fudge-brownie ice cream cake I was going to make. In each case, and for Calvin's, each other's, and the larger community's sake, we were all going to do Covid-19 rapid tests before gathering. But now that Calvin has been exposed to someone with Covid, the much-needed merrymaking is off the table for at least the next week.
While I understand there's a remote chance Calvin might have been exposed to a vaccinated person with a breakthrough infection, it remains hard not to be frustrated with the maskless and unvaccinated who are inundating our emergency rooms, hospitals and staff; patients are sleeping in the hallways of our local hospital's emergency department due to lack of beds from an influx of mainly-unvaccinated Covid patients. It's hard not to be angry at the reams of Covid mis- and disinformation circulating on social media and enriching bad actors. It's hard not to be aggravated at the conspiracy theorists and anti-vaxxers helping to exacerbate and prolong this public health crisis which has killed over 792,000 Americans and orphaned tens of thousands of children. It's hard to swallow arguments about so-called natural immunity in the face of a novel coronavirus, hard to stomach casual attitudes about getting infected and pretzel logic about achieving herd immunity by means of rampant contagion—both notions which neglect to consider the grave risks posed to the community at large, our healthcare infrastructure, our economy, and the most vulnerable of us. It's hard to tolerate the unwillingness to concede that variants of the virus such as Delta and Omicron—or worse—are more likely to emerge in unvaccinated populations, and that the unvaccinated are more prone to be vectors because they tend to stay sick longer and have worse symptoms than folks who are vaccinated.
With all this vexingly top of mind, I am grateful, if not amazed, that Calvin is so dutiful at wearing a mask despite the fact that he has no concept of why he should. Despite the fact that it gets covered in drool which makes it uncomfortable to wear and extra hard to breathe. Despite the fact it rubs his little chin raw. And nearly two years into this pandemic, it's mighty worrisome and maddening that, as the virus continues to mutate and surge, there are those who still act cavalierly, only thinking of themselves and seemingly unaware that, despite perhaps feeling healthy, the unmasked and/or unvaccinated can still harbor and spread the virus to others without knowing it. It's a twisted notion of freedom when that very freedom comes at the grave expense of others. No one is infallible. We don't live in a bubble. Wear a mask. Get vaccinated. Do it for your family, your neighbors and your nation.
|Photo by Paul Barron|
The kid is often psychotic. Batshit crazy. Bonkers. Virtually impossible. The other night was a terrible one. Calvin woke before midnight and never went back to sleep again. He spent hours tossing and turning, head-banging, wall-slapping and making all sorts of other annoying and anxiety-provoking sounds. He got tangled in his bed pad and covers. He got cold from his wet, drooly thermal. He soaked two diapers. But he wasn't seizing. He didn't appear to be in great pain. And he didn't seem all together panicky—no racing heart or clammy hands. But still, he was amped up and likely feeling miserable.
His head-shaking, grousing, and head-rubbing made me wonder if he might be experiencing side effects from the new seizure medication, Xcopri. But when I researched the drug again, there is virtually no mention of psychiatric effects beyond a low incidence of irritability. So then, I wondered if his mania might be due to the extra cannabis I'd given him, but I quickly dismissed that, having not really seen that effect before. I wondered if he might have a headache (headaches hurt, but often aren't bad enough to make one cry) so I gave him acetaminophen and, later, ibuprofen. Lastly, I wondered about the Keppra, which is notorious for its behavioral side effects. I got a sick feeling in my stomach thinking about all the what ifs. What if things hadn't gone so wrong to begin with? What if Calvin had never developed epilepsy? What if he had never been given benzodiazepines? What if he had never taken any anti-seizure drugs? What if he had never been born? Our poor boy suffers so senselessly; there's no reason for it.
Keppra's list of behavioral and neurological side effects is long: aggression, agitation, anger, anxiety, apathy, depersonalization, depression, emotional lability (mood swings), hostility, hyperkinesias, irritability, nervousness, neurosis, and personality disorder, for starters. I often describe my son as "unreachable." Not infrequently, he has abrupt outbursts of laughing and shrieking. He can never sit still. To complicate matters further, like benzodiazepines, apparently Keppra's side effects can be caused by its use, its dose reduction or its discontinuation. Calvin has been on Keppra for years and, until more recently, on a very high dose. I say to myself, we're fucked, wondering—if he's lucky enough to come off of the drug—if the side effects will be permanent, meaning he'll never, ever be a calm and happy child who feels good. Can you imagine being that person or the parent of a child who feels like that? It's called hell on earth.
I think back to when Calvin was first prescribed Keppra. He was only two and had been newly diagnosed with epilepsy. I remember how amped up he was then, often hyperventilating as if extremely excited. Years later, after ten failed anti-seizure medications and dwindling options for a new one that might work (when the first drug fails to control seizures, the chance a subsequent one will work shrinks to less than five percent and decreases with each successive failed drug) we decided to try Keppra again (a friend's daughter had retried it, and the second time around it worked for her, albeit with the help of two others.) I try to recall if that is when Calvin's agitation and mania began, his mood swings and restlessness. I had always blamed the benzodiazepines. Maybe I've been blaming the wrong drugs all along. Or maybe (probably) they're all culprits. In any case, they've made my kid psychotic, and I fear he'll never be the same again, fear his brain has been forever changed, fear he will be plagued by this miserable restlessness in perpetuity.
Inside this two-and-a-half bedroom home on this small patch of land, there's so much suffering—seizures, sleep deprivation, headaches, anxiety, anger, resentment, tedium, frustration, despair, envy, fatigue, panic, psychosis. Still, I try to hold on to hope. Keep my head above water. Thankfully, I've become deft at that. Rather than sink, I watch from my writing desk as diaphanous clouds drift amid a cornflower blue sky. I see and hear the wind finger through the pines outside my window, see the tops of trees swaying in the breeze. I think of my good ole friends and the ones I've made more recently. I listen to orchestral music which often moves me to tears. I'm grateful for warmth, beauty, comfort, love, light, space, nourishment, seasons, family, friends, strangers, forgiveness and walks in the woods and on back roads. I'm even grateful for my sweet, adorable, affectionate, impossible psychotic child. After all, it's not his fault.
|On one such day two years ago.|
thanksgivings (in no particular order)
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.
he fell asleep easily, cuddled up in my lap on the green couch. although he is still tiny for his age, it's impossible not to notice how big he's getting. i wonder if he's outgrowing his thca cannabis oil dose. no doubt his hormones are raging. half an hour later, he woke suddenly, and by the distressed look on his face—a look that seemed to say, save me, mama!—i knew he was going to seize. i got out from under him so i could more easily keep him on his side to prevent him from aspirating. the grand mal was like all the others—ninety seconds of rigid, crippling convulsions, his fingers, ears and lips tinged grayish-blue from not breathing—except that this one occurred midday, like the last one that happened in the car. i hope daytime grand mals are not becoming his new normal. it's a troubling couple of events to say the least. still, i can be grateful he went ten days without any at all.
sitting here keeping vigil, i study his features: his noble nose, striking eyebrows, high cheek bones, full lips, smooth, thick hair. he's a handsome boy—strong, square shoulders, a broad back, narrow waist, good abs and pecs—and would have been more so had his brain filled out before he was born. but for whatever reason, it didn't, which accounts for the fact he is nonverbal, legally blind, uncoordinated, developmentally delayed, and racked with seizures.
of late, i've been feeling a bit more envious than usual; i guess that can happen when one pays attention to the rest of the world. i see photos of this year's seniors in high school; calvin should have been one of them. many are sons of my friends. they're good looking and fit. some of them are quite tall. all of them are athletic. i see them in photos on social media wearing their team jerseys, draping their arms around their friends' necks. i see snapshots of some of them running. i see other pictures of them hanging out with their families on trips to visit colleges, at sporting events, camping with their dads. and although i love seeing these pics, which are fascinating and never fail to swell my heart and bring a smile to my face, it's impossible not to feel cheated. parenthood's most precious moments, which are many, at every turn and milestone and in most every way, continue to escape us.
my son is sleeping on the couch now, his eyes half open at times, his brain likely still vibrating (did i tell you that one night after a seizure, i slept with my head against his and could feel his brain humming? most disturbing!) i've just now dripped some extra cannabis oil into his mouth, hoping to avoid another cluster of seizures like we had a couple of weeks ago. it's softly raining, which has a soothing effect on me, and a way of not making me feel like i'm missing out entirely. i glance outside and see a kid walking down the sidewalk with his mother and their dog. i feel a jealous pang. envy is a strange thing. they call it the green-eyed monster. and if you've ever gazed at me up close, you'd see i fit that description to a t.
already, i sense another seizure coming on. my son is restless, dropping down, agitated, putting his fingers in his mouth, staring at the sun. and so, to get my mind off the dread, i turn to gratitude. it helps me forget the worry, at least for a moment or two. i think about all that i'm thankful for ...
long walks with smellie the dog. a body that works well and is healthy. stovetop espresso with warm milk on a cold morning. well-seasoned cast iron skillets. weekend eggs fried in olive oil to jammy perfection. sunny days with winds which almost feel warm. blue jeans and hoodies. new neighbors who give my boy their first hug. the smell of homemade cheese bread fresh from a hot oven. the sweet and powerful voice of kate bush. catching up with an old friend on the telephone. clear view to the backyard shrubs, having cut down the perennials. my husband, who cooks ridiculously delicious food. blue skies so crisp it's as if they've been starched, stretching to forever and back again. quotes by albert einstein on the meaning of life. deep conversations with a new friend. understanding that being a martyr is not attractive. converse ten-buck chuck taylor all-stars in two new colors, which somehow brighten my mood. clean windows looking out on a green garden. fresh coat of gray-green paint on the house trim. watching leaves and limbs shiver and sway in the wind. big fat blue jay in the bird bath bathing. sunlight streaming through the brunswick window, and the way it lights up a face, a wall, a room. cannabis as medicine for epilepsy. michael's margaritas sporting a kosher salt rim. smoked-chicken enchiladas. funny movies and tragedies. my adorable son.
looking back at recent posts, i realize i haven't been using capital letters much. somehow, lower-case-only promotes stream of consciousness, but it's also a way of conserving effort instead of expending it. lately, i feel the need to save all the energy i can just to deal with these seizures and this child of mine.
calvin continues to be hammered by epilepsy. yesterday, he had another grand mal—his fifth in a week. he also had about a dozen focal seizures over four days—more than he's had the entire year. he had one or more seizures every day for a week. i can't recall that ever happening. i have no idea what's causing this bad spate, especially in the wake of nineteen days of virtual seizure freedom. could it be the new strain with which i made his cannabis oil? could it be the ketoconazole cream we've been using for the rash on his neck and chest (the oral version can cause seizures)? a growth spurt? a reaction to the flu shot he got five days before the string of seizures began? some underlying illness we can't detect? a change in his hormones or metabolism? the full moon? last week's car accident? some combo of the above to create a perfect storm? who knows?
yesterday's seizure occurred just after midday, a very rare time for him to have a fit. we were in the car on our way to pick up groceries. calvin let out a blood-curdling screech in the back seat. i took a quick left onto a side road, pulled to the curb, unlatched his seatbelt and laid him down so he wouldn't aspirate. pieces of apple and bile sputtered out of his mouth. when it was over, i tried driving home while he was still laying down, but couldn't latch the seatbelt, so i had to prop him up as best i could. he sat there, kind of sideways, his head drooping as if he were drunk.
at home, i was able to lift and carry my five-foot tall, eighty-five-plus-pounds-of-mostly-dead-weight child into the house and over to the green couch. no doubt i resembled the image i've used on this blog of charlotte gainsbourg's character carrying her son in the film, melancholia. i sat next to calvin as he laid on the couch poking his eye, rubbing his fingers together, and grinding his teeth. disconcertedly, he never went to sleep.
last night, i got up sometime after midnight and gave him a syringe full of cannabis oil, this one having been made with the same strain—chemdawg—that he had decent success with for years. a few years ago, when the cannabis dispensary changed hands, chemdawg became unavailable. now, we can never seem to get the same strain twice, and i imagine strains might make a difference in the treatment of epilepsy. what to do?
thankfully, calvin didn't have a seizure last night, but i'm not certain he is out of the woods. he's nowhere near baseline—having been sleepy and spacey most of the day. i have no idea what the hell is going on. there aren't many options left in my back pocket beyond riding this thing out and/or considering adding a second drug to his regimen, which i'm loathe to do. i'm fearful he's going to get hammered again, either by more seizure or the side effects of the drugs used to treat them. most of all, i dread him having a seizure that doesn't stop. please stay tuned.
i wish it would rain again. patter on the roof. soothe my sorrows. quench and cleanse. inside, the light is warm and dim. my sister sent me a photo of an old flame. i can't quite place his face. don't know it's him. but then. but then. i note a smile that's only his. like so many, it's unfading. some things hardly change from their beginnings.
outside, winds arise and finger through the trees. pine needles shed like rain. the ground below turns solid copper. clouds begin to break as soon as they close in. again. again. leaves turn gold and crimson from one day to the next. autumn's alchemy. someday soon, a withering frost will hit. the moon is full again.
i crawl into bed with my son for the umpteenth time. he has just had a little fit ... again. his face is pale. i syringe a bit of cannabis between his lips. change his millionth diaper. in his short life, i've given him unknown numbers of pills and milliliters of medicine. still he seizes. again. again. in so many ways, he's still like an infant—drawing his knees up to his chest. wrapping his little arms around my neck. i think back to the week he was born. hooked up to leads and tubes inside a plexiglass box in the hospital. michael got no respite from work. instead, he was asked to do extra. thankfully, he declined the request. for seven weeks, calvin never left the hospital. my days and nights were spent there in the room with him. before and after work, michael provided us sustenance. so did some of our friends. it was all so uncertain and exhausting. and then. and then. seventeen years later, we're still dealing with calvin's diapers. still spoon-feeding him. still dreading the next seizure. each day the same. few changes. again. again.
the clock is off. it chimes four times at half past ten. it doesn't matter. its gong is comforting. smooth and round and soft like the box of wood that houses it. i think of the timepiece's beginning. a seed. a sprout. a sapling. a tree. a trunk. a log. a plank. a clock. i recognized my face in it when i entered the antique shop. i barely had a dime in my pocket. still, i knew i had to bring it home. it reminds me of getting through hardships. tick tock. tick tock.
as calvin rests, i see pictures of other people's kids standing straight and strong. they smile and wave and clown for the lens. i see photos of them running. playing sports with other children. watching movies with their kin. i'm fascinated. feel at once happiness and envy. i've learned to hold both emotions. it's necessary for understanding and survival. forgiveness. if only things had been different from the beginning. but then. but then.
the cast iron stove creaks with heat from a fire lit with paper and kindling. below the flames, a pile of embers glows and crumbles into chunks still reminiscent of their beginning. i hear my son up in his bed. he's rustling around in the covers. each time he moves his bed clicks. it triggers me. when i reach him, he's in the middle of another fit. those roving eyes and dusky lips. and i remember again when it all began. and how the fear and hurt and angst and stress keep happening. just like in the beginning. reliable, like the full moon and the rain and sun and wind. each week and month and year are the same. again. again.
dreamscapes and seizures
out of nowhere
call it what you want. a close call. an accident. incident. collision. crash. smash-up. main thing is we seem to have escaped unscathed. the motorcyclist got a gash on the sole of his foot. he was wearing sneakers instead of boots. seated on his machine, he must've come at us with some decent speed. he didn't slow or skid or stop, that is until he hit us. thankfully, he didn't smack us at ninety degrees. he hit at an acute angle and glanced off of our side panel. put a major dent in the back seat door. the impact rocked us. the three of us lurched sideways in our seats. i screamed.
it happened tuesday. calvin, smellie, and i had been taking an after-school drive along the same old beautiful back roads we often do. had stopped at simpson's point to take in the scenery, sun and wind, salt and choppy water. for whatever reason, calvin went bonkers. so we went back to moving. not long after, he calmed, so i decided to turn around. to go back and take a photo. that's when it happened. the crack-up.
after the accident, a kind bystander led me to the shoulder. calvin's teacher drove past and pulled over. he waited with calvin while i called and spoke with police. i asked the motorcyclist if he was hurt. i was concerned. he mentioned his foot. i asked him what had happened. asked if he was trying to pass me. he said, "don't play the blame game, lady." i assured him that was not what i was doing. just wanted to understand what had just occurred. as always, i had signaled before the turn. had more than ample space—200+ yards—between me and the oncoming car in front of him. i had taken the left turn safe and slow. the biker came out of nowhere. hit us as we were still curving around. i was still going slowly as one does in a turn, my signal still on.
in the end, he seemed to understand my questions. no reason to rewrite or malign. he wasn't a bad guy. i didn't get a ticket. didn't break any law. i was established in my lane. don't think i was at fault. but who does, after all?
in the wake of the mishap, i think about the what ifs (since calvin's birth, i've become good at it.) i shudder to imagine the outcome had he struck our side head on. what if he had been driving a truck? what if we had hit him on his cycle? the imaginations are sickening. it could have been so much worse. we're all okay. fortunate.
an outpouring of care and concern came in from folks who saw our smashed-up car on facebook. dozens of kind words and love streamed in. yesterday morning, while walking on the wooded trails with smellie, i ran into (not literally!) a runner i used to see often on my back roads travels. he paused his workout to ask if we were okay. i gave him the details. he seemed relieved. i expressed my appreciation for his kindness and concern. then, he sped away.
yesterday afternoon, i stayed home with calvin. we traipsed around the house and did circles in the garden. didn't venture onto the roads. calvin was in a good mood. no problems at school. i spoke with his teacher on the phone. thanked him for his role on the side of the road. i realized, that though the accident itself was jarring, i wasn't shaken. perhaps, since he was born, little beyond calvin can faze me.
this morning at four a.m., calvin suffered a grand mal. it had been nineteen days since the last one occurred. unlike the scene of the crash, it was grisly. calvin's little body was stiff and wracked with spasms. his face and fingertips turned ashen. after the attack, his airway was jammed. we rolled him on his side. he restarted breathing. i crawled in and cradled him while his heart was still racing. his eyes were wide open, vacant, not tracing. later, he turned to me and held my neck. pressed my head against his own, as if to lessen some hurt from his brain's wreck. i wish i had seen the thing coming. maybe i could have restrained it. but when it comes to things hurtling from out of nowhere, sometimes there's just no way of escaping.
|Calvin going berserk at simpson's point.|
getting lost and forgetting
it has been seventeen days since calvin's last grand mal. equal to a stint in early march. closing in on a longer stretch last december. i wish my worry decreased along with his seizures, but i'm always on guard waiting for the proverbial shoe to drop. spending time in the garden and out and about helps me in getting lost and forgetting. it's good to try and focus on anything but my son and his wretched condition—birdwatching, watering, pruning a little, jogging, writing. anything that takes me places besides the stress of a disabled, chronically ill son.
the weather in october and september has been glorious. days on end in the low seventies. clear blue skies and gorgeous autumn foliage. this morning, i ran another of several 5Ks since my knee pain abated (i started too hard.) these days, i take it relatively easy. it feels good. running is so much more pleasant than swimming indoors. nice to look around at the world instead of at stripes on the bottom of a pool. and, i don't smell like chlorine all day long. it's nice to see friends. greet and wave to strangers. watch the landscape changing with the seasons. i can feel my lungs and thighs, glutes and calves getting stronger. when i melt a little more of this middle i hope to feet light and lithe like i used to. shouldn't take much doing. i'm lucky my body is still responsive.
early yesterday was perfect for a drive. calvin was home from school for the indigenous people's day holiday, so we took our usual ride. we ran into the carhart dog-walker whose name is john. we slowed to a stop and visited for a bit. he told me about his job and about the gorgeous flowering plants he is tending in his front yard, which are chock full of purplish blossoms, and then we said so long.
a mile or two down the road i saw a new friend i recently met. she's one of the regulars i've seen on my back roads car rides. her name is lorel and she does a lot of walking. i pulled to the shoulder and rolled down the windows so she could meet calvin and smellie. in the back seat, calvin was going a little berserk, but she didn't seemed fazed at all. probably in her seventies, she's fit and spunky, clad in leggings, an oversized sweater or jacket, nappy hat and colorful knit gloves. she told me of her violin playing and offered me some homemade pesto; i sense she makes it in bulk from basil she grows. i may have to take her up on it!
today, thankfully, calvin went to school again. he hasn't missed much this year. i put him on the bus around seven and he comes home just after two. today, i had enough time to walk smellie, run, eat a bowl of granola, install the bird bath my new friend and neighbor gave me, mow most of the lawn with our manual mower, shower, tend to email, and write a little—all good ways of getting lost and forgetting about my little enigma ... until he comes home.
this morning, i woke up feeling grateful. calvin hasn't had a grand mal seizure in fifteen days. that's the longest stint he's gone in months and months. maybe even longer. recently, i decided to be more liberal in giving him extra thca cannabis oil. i'm convinced it is responsible for this longer stint. i figure cannabis is a better idea than adding a second pharmaceutical drug plus its side effects. they're terrible.
this morning, i woke up feeling grateful. calvin didn't soak through his diaper and wet his bed. we were able to give him his morning medicines and go back to sleep for a spell like we did yesterday. let me tell you: sleep makes all the difference.
later, while walking smellie at the fields, birds were flitting and chirping about. a friend i passed on the trails told me she had just seen some wild turkeys. mushrooms are pushing up through the earth in all kinds of sizes, shapes and colors. a partly cloudy sky turned into a low bank of fog, sharpening distant conversations like talk across water. autumn colors are emerging in fiery oranges, glowing roses, glimmering yellows and reds. this time of year is pretty damn gorgeous. i wonder if calvin appreciates the seasons.
yesterday, we got our flu vaccines at a drive-thru clinic, then went for a short car ride. the back roads were mostly quiet. in the back seat, calvin wrestled me into giving him hugs and kisses. he smiled gleefully. for the most part, the kid has been all right lately. only a few manic outbursts of yet-unknown origin. i'll take it.
today, we caravanned up the coast with the same friends with whom we recently vacationed. they're my sister and brother, and have a boy a lot like calvin. we stopped to grab some pastries in wiscasset, then made our way up to a place called sewall orchard where we watched apples being pressed into cider. we ate a sausage-ricotta pizza in a boat launch parking lot. i walked calvin to the end of the floating dock, holding him tight as it was rocking. i wonder what he made of it. wonder if he knew he was walking across water.