in the space of two days

wish i could sleep standing up. wish i could sleep while awake. wish i could sleep through the nightmare that is my son's epilepsy. a friend recently expressed regret over calvin's seizures. i said i never get used to them. perhaps i understated.

the other day i tweaked my back while stretching. stupid thing. happens only rarely. i was mostly fine until i tried to shave my legs. then i crumbled. two short car rides seemed to exacerbate the ache. last night, the pain was crippling. it froze me in place. if i can get into standing, the pain mostly goes away. again, i wish i could sleep that way.

calvin has had three grand mals in the space of two days. two of them this morning between four and six. my condition meant that michael had to do last night's heavy lifting, getting up every thirty to sixty minutes to pacify our restless kid. we gave him extra medicine. still he seized. i'm not one to exaggerate; i thought i might have to crawl on hands and knees to get to him. eventually, i got my head and shoulders above my legs. since then i've stayed that way.

i managed a morning stroll with smellie. easy slipping into rubber boots for rain. we skirted the fields—gingerly; grass is more forgiving than pavement. as long as i keep moving, my back mostly feels okay.

though weary, i haven't sat or laid down yet. afraid i won't be able to get back up again. i'm writing standing up, my laptop on calvin's dresser. my boy in bed is humming and staring at his frantic fingers. the house is trembling from nearby construction. traffic swishes by in the rain.

no car ride in store today. i'll have to imagine past ones—the gradual rise and bend above a sweeping salt marsh reaching to its sea, the sleepy backroad curves and dips, the stately oaks and pines, the little tree which drinks from tiny lake biette, the familiar and friendly and adorably grumpy faces. instead, i'll pass the time indoors peering out the windows, hoping for the seizures and the pain to go away.

Lake Biette

where i roam (and don't)

As other kids head back to school, mine is staying home. During a pandemic, sending Calvin back into the classroom is too much of a risk for us. He can’t keep a mask on his face, can’t maintain a safe physical distance. Everything he touches—railings, tables, people’s hands and faces—become part of his microbiome. Because of his condition, if he gets the virus he likely won’t fare very well. If either Michael or I were to fall quite ill, it could prove disastrous for our family.

In mid March, we let the nurses go. Since then, we’ve been going it alone. Calvin has seen virtually no one but me and Michael the entire time. Regrettably, we no longer take him to the grocery store, one of a very few places he liked to go. I’ve been within mere feet of my son nearly twenty-four hours seven days a week since his last day of school six months ago. My only respite is my morning walk with Smellie. We traipse the fields and their surrounding wooded trails. It's the only place I roam alone.

Our days are mundane. Each begins with waking too early. Sleeping in is not a luxury we enjoy, even in a pandemic, because I have to give Calvin his time-sensitive, anti-seizure medicine. On most days, Michael helps me at least until mid morning and at night. The rest of the day I go it alone. I change Calvin's diaper, feed him, bathe him, clothe him, toilet him, wipe him, hug him, kiss him, fend him off, hold him close. We tread endless circles around the house and yard. I take him and Smellie for long car rides and sometimes, though not nearly enough, for strolls. In between, I listen to music or news. Lately, I hear stories of wildfires causing smoke and ocher skies, choking states in which were my beloved former homes. I read of Covid outbreaks, massive layoffs, healthcare nightmares, betrayals and lies leading to unnecessary deaths from the virus. Despair and fatigue set into my already weary eyes.

When six o'clock arrives and we put Calvin to bed, I can relax a little bit, have a glass of wine. Once a week, or so, we visit with another couple for a limited time at a safe distance outside; I get energized. At night, Michael and I hunker down with a good movie or to read, then hope to get a decent sleep. Too often, we're rattled by the sound of Calvin's seizure scream; he has them once or twice a week. Like the pandemic, they're unsettling. I dread them. I lose much-needed sleep.

Like last night, lying next to Calvin in the seizure's wake, in my mind I try to roam to faraway places. I go to where the haze in the air is mist. I visit familiar cities which are gleaming. I go to where vistas are myriad, waters are calm and azure, fields are vast and green. I go to where there's no pandemic and where Calvin doesn't seize. I dream of times when leaders are virtuous, and the future isn't bleak. 

advice and intuition

She cried the cry I've cried so many times. Helpless, hopeless, sleep deprived. Racked by seeing her child repeatedly seize. Pummeled by too many drugs to manage and consider, enduring their countless impossible side effects. Exhausted by too many hospitals and doctors, days on end of spoon-feeding and changing wet and poopy diapers, all compounded by stresses of the coronavirus. I know the feeling, that sense of drowning. I picked up the phone and tried my best to throw her a life ring.

This mother had previously connected with me on a social media page about epilepsy. She was reaching out again for advice about Onfi, which was the second of two stubborn benzodiazepines (think Xanax, Valium) that Calvin was on for more than half his life. It took us four years to get him off it. Onfi had been prescribed to help Calvin wean from the first benzo, Klonopin, which he regrettably started taking when he was just three years old. His neurologist at the time, who I'll refer to as Dr. Rx, added Klonopin to Calvin's regimen as a bridge drug while we titrated another, Lamictal, to a therapeutic level. The move was totally unnecessary considering a second drug, Zonegran, had already been prescribed to serve that purpose. I felt it was a cover-your-ass maneuver. I questioned Dr. Rx's logic, asked why he prescribed Klonopin when benzodiazepines aren't meant for long-term use, but at the time I wasn't confident enough in my own research or assertive enough to press further. I was so green then. Everything was scary, new and confusing. And Calvin, even at three, was so tiny. But I should have known since I had questioned Dr. Rx's prescribing of the previous drug, Depakote, which risked causing liver damage especially in someone like Calvin; after six months, it appeared to be doing just that. When it came to the Klonopin, I was told Calvin would be on it for just a few weeks, but despite my repeated pressure to take him off of it, he remained on it for over a year, making it more difficult to take him off of it without experiencing a doubling of his seizures and the introduction of another benzodiazepine, aka Onfi.

During the course of my conversation with this mother, I tried to lessen some of her worry over having re-dosed the Onfi after her child had vomited. I hope I disabused her of any guilt or fear. I described how, years ago, neurologists never really knew how to council me in identical situations. Each neuro had a different suggestion for me, which were clearly best guesses, and in the end I always relied on my intuition. This mother and I talked through her situation. I told her what I knew about Onfi's long half-life. I asked her some questions about her son's behavior and seizure activity during the wean. Together, we strategized, deciding it might be best to skip his bedtime dose, then to give her child his morning dose a little early.

"Above all," I told her, "trust your gut," suggesting that if in the middle of the night things didn't seem right with her child, she shouldn't worry about giving him his next dose; she could get back on his regular schedule gradually. (In the end, our plan worked.)

I went to sleep remembering those awful moments of doubt, guilt, self-pity and angst, all exacerbated by days, months, years of too little sleep. I tried to recall what Calvin was like before his epilepsy diagnosis and before starting a battery of antiepileptic drugs—sometimes four at once. I imagined what he might be like if he'd never taken so many mind-altering medicines, especially at a crucial time of brain development. I drifted off wishing this mother strength, wishing her baby peace and healing, wishing epilepsy didn't exist.

A photo of Calvin just before his 2nd birthday, before he was taking any anti epileptic drugs.

game changers good and bad

coming of age in san francisco and all i left behind there. michael. maine. marriage. devastating sonograms. hospitals. emergency cesarean. calvin. essential and unnecessary intubations. grief. relentless seizures, including this morning's, the forty-five- and twenty-minute ones. antiepileptic drugs and their side effects. benzodiazepines and their heinous withdrawal (calvin). loss. acute and chronic sleep deprivation (mine). diapers that fit (calvin). honesty. turning off the bed-stand baby monitor. tenure. finding a voice. partner doctors. conceited ones. despair. writing daily. palmetto harmony CBD oil. mothers and fathers of other kids like ours. curaleaf bud and homemade THCA cannabis oil. kick-ass nurses. washable bed pads. angst. the love of a child. onesies. attentive, understanding, open, reliable, responsible school staff. sabbatical. smellie the wackadoodle. the kindness of strangers. gratitude. less medicine rather than more. tenderness. slow cookers. slow-cooker chef-hubby. every single dinner he fixes. state medicaid. the ease of small towns. patience. good cries. walks on the beach on days like the autumnal equinox.

again i ask

again i ask, is it the barometric pressure? the oppressive humidity? some kind of virus? the unrelenting heat? is it the new thca cannabis oil, the one i made with indica? is it a post-ictal state that is causing his lethargy?

today my sweet boy is much improved, and so i can feel more sure it's not the cannabis oil that was causing his malaise. he catnapped on and off from morning till eve. woke to a focal seizure at four-thirty today. now is splashing in a tub not unlike pond water quite happily.

as i write, my achy eyes are begging me to get more sleep.

curses

For the past two days I've been channelling my inner Joan Rivers, my best Samuel L. Jackson, my George Carlin, cursing worse, even, than Andrew Dice Clay. With paper-thin patience, I've been struggling to not let my kid drive me crazy with his constant grousing. Needless to say, I'm failing. To make matters worse, Michael has been out of town for three days at his solo photo show at the Telfair Museum in Savannah, thankfully to return any minute, so I've been flying solo since Thursday evening.

I haven't been counting, but I'm certain I've spat—at least once—most of the words on George Carlin's list of things you can't say on TV (think of the worst swear words possible) plus a peppering of other foul curses. I'm exasperated, sleep deprived and irked. Calvin has been intense the past two days, at times devolving into sudden manic tantrums, the source of which, since he can't tell me, I can only guess are either gas pains or a side effect of his Keppra, namely emotional lability.

I'm so fed up with listening to him shriek and whine and grouse all day for two days, and I'm sick of listening to myself at times respond with such ugliness. The scowl on my face feels etched in so deeply I wonder if it will ever fade.

Photo by Michael Kolster

on sovereignty

the breakthrough from gray skies to blue doesn't always bring me pleasure. sometimes the shadows cast by an unfettered sun are far too hard-edged for me. i must squint and scowl, avert my gaze. glowing colors which are saturated on dewy mornings appear washed-out and tired at midday, as if an antique snapshot made them that way.

on days like this the events of the world, the nation, feel crushing: weak and deceitful leaders, starving, neglected children, abused and oppressed women, desperate, fearful migrants, mass shootings, suicides, overdoses, executions. i overheard the grocer's cashier say, "she had on a dress she had no business wearing." her words stung as if they were meant for me. i wanted to say something like, people can wear whatever the fuck they want, or, as my dad used to say jokingly, what's it to ya, cabbagehead?

weariness and worry weave themselves into my body and brain. i know it's the consequence of stress and sleep deprivation. almost nightly, i catch myself clenching my jaw or grinding my teeth. perhaps it's loneliness i feel in my bones, strolling around in the garden somewhat aimlessly. what am i searching for? i bend, crouch and stretch, snapping errant twigs, clipping others, forcing growth into otherwise gangly, rambling, branches. i thirst for this control of nature; i have none when it comes to my boy and the seizures he suffers so endlessly. i wish so much for freedom from this malady.

recent talk of a merciful god bugs me. i recall a friend thanking god for protecting her non-verbal, disabled child from nearly choking on a chunk of celery that had been lodged in the back of her mouth for hours. why hadn't god simply protected the girl from gagging on the celery in the first place? why hadn't god saved the child from suffering scores of seizures that rack her brain? no doubt countless pleas have been made to god—concerning war, famine, disease, blight, disaster, injustice. they go unanswered regularly. though the existence of a certain kind of sovereign universal force (Nature?) seems reasonable, it's the belief in a merciful god—and one who condemns and punishes—in this messed-up world that is so astonishing to me.

in gazing through the shrubs and trees, I consider calvin, my little guinea pig, who is surviving on one pharmaceutical drug and two cannabis oils for his epilepsy. one oil i make, the other i send for in the mail. every good month is flanked by awful ones. his seizures are reliable and often come in clusters, of late, at the very least weekly. i hear of others afflicted with this disease, some too poor to afford their therapies.

folks go on about their freedoms while being hamstrung by healthcare premiums, copays, costs and deductibles so excessive they risk bankruptcy. some must choose between food and insulin. greedy corporate bastards and their political pawns feed on people's fear and ignorance, twisting the notion of what it means to be free, keeping people sick and shackled, widening the divide between those who have (money, power, control) and those who don't and never will. no one should profit off of ailing bodies. that's not freedom. that's tyranny.

near the end of my musings, i glance outside again and then at a spoon that hours before had peanut butter on it. it sits on a mysteriously-gotten susan sontag book, patiently awaiting to be picked up. it could sit there forever, until it becomes part of the room's wallpaper—an antique snapshot. i sit here wondering, though not concerned, what life is all about, my motions and emotions so crisscrossed in my body's sovereign continent. yes, sovereign.

a birdsong sailing through the screen door breaks my melancholy. i hear the bus pull up with calvin. bathed in late-afternoon dappled shadows, the garden has softened. the breeze is cool and exhilarating. the sun on my back feels good.

hell is an ambulatory eeg

i really don't feel like going into it. suffice to say, this happened today and is still happening. #ineedfourmorehands #fuckthisshit #webetterlearnsomething #colossalpainintheass #impossiblekid #tomorrowcannotcomesoonenough

gratitude and sorrow

At Niles' request, I had brought Calvin downstairs Saturday to greet Michael's documentary photography students who had gathered here for dinner—something Michael has been doing for eighteen years at the close of every college semester. Poor Calvin, having had a good day despite some seizure harbingers (sour breath, warm hands, rashy butt) had spiraled into his "ooh-oohing," seemingly oblivious to anything but his fingers mad-snapping mere inches from his face. The students watched our son in relative silence, seemingly not knowing how to respond to an uber-awkward child so remote and unresponsive.

Just before they arrived, I'd been upstairs changing that hour's third, foul, poopy diaper which Calvin had gotten his hands into and within minutes proceeded to spread shit onto his pants, sheet and the toys that he mouths. Multiple wipes and four applications of hand sanitizer did not remove the reek from his fingertips. Thankfully, shortly after Calvin met the students, he went to sleep without too much trouble, and I was able to join the crew.

The young men and women, students of all races and backgrounds, sat around the coffee table gabbing and eating pizza before doing a Yankee swap with their photos. I stood from the dining room, sipping wine, looking on, making jokes and commenting on their photos. I talked too briefly with Octavio, whose brother Daniel, a Fulbright scholar, had also been a student of Michael's. I spoke with Brennan about a photo book he is publishing, and we talked about his love—and my curiosity—of Russian literature. At the end of the evening one of the students—I think it was Nate—asked how Michael and I had first met. I blushed telling them that when I was unemployed, before I began my design career at Levi Strauss in San Francisco, I'd been one of his photography students in a community college adult education class when we were both thirty-four. They laughed when I told them that Michael gave me an A- in my intro class, prompting me to take a second class to get the A. It was at the very end of that second semester when he and I began hanging out.

As students of an advanced class, I'd met all of them previously when they had come over as beginning photography students. After the photo swap and some brownies and ice cream, the group lingered a while before all but five of them left. For the next couple of hours, I sat amongst the beloved stragglers—J.P., Niles, Cirque, Nate and Brennan—as we discussed religion, photography, English as a major, parents, Rumspringa, and college professors. Even at ten o'clock I was still alert, energized by the lively conversation and feeling comfortable—like I did as a child with four brothers—amongst a bunch of guys.

It was impossible for me to sit there on the floor of our living room and not wish that any of the boys—young men, really—were my son, all of them witty, talented, kind, college undergrads, the kind I once dreamt a son of mine might be.

Eventually, sleep deprivation got its grip on me and I had to say goodnight. I hugged them all, hoping I'd see them again sometime. I went to sleep feeling gratitude and sorrow—gratitude for our ability to know, laugh and engage with these bright, curious, open individuals, and sorrow because we'll never experience any of that with our own boy.

Then, at three-thirty on Mother's Day morning, my sweet, vulnerable child did what I thought he might do: he seized in his bed for ninety seconds. I dabbed lavender on his pillow, then crawled in next to him and held him like the baby he once was, and still is.

Me and Octavio

primal scream

Last night at around eleven-thirty I let out a primal scream. I couldn't help myself, having gotten up every half hour or less since nine o'clock—each time within minutes of falling back to sleep—to resettle my son in his bed and cover him back up. My shriek began as a question: What is wrong (with you, Calvin)?! It ended in an animalistic howl so loud I felt it must have woken the neighbors and shaken the house. Thankfully, both Nellie our wackadoodle and my child seemed totally unfazed. I crawled back into bed with a slightly hoarse and irritated throat, and deep feelings of remorse for my behavior.

Chronic sleep deprivation is torture. It can make me impatient and ugly. My son's all-too frequent awakenings (which, by the way, are far fewer since starting him on a newish CBD oil) sometimes lead to insomnia. Despite being exhausted, I can lie awake for hours worrying about silly things like unfinished chores and calls that need to be made. Often, I fret over the miserable state of things—my son's medicines and seizures, our earth's man-made ills, this administration's vile and pathetic behavior, the ongoing and oppressive patriarchy, the greed of oligarchs, the contempt for the poor, the apparent surge of racism, misogyny and bigotry in the world. Eventually, I get my mind to calm down by imagining forests and oceans, and by counting backwards from one hundred.

This morning, while hugging Calvin in my lap, I apologized to him. I'm fairly certain he doesn't know the meaning of forgiveness, and yet I've no doubt he is forgiving. I recognize my various stresses and limitations in taking care of my infant-toddler-teen these past fifteen years, especially during Michael's absences, and so I try to forgive myself. Thankfully, my husband is coming home tonight after a two-week stint in Europe having taken photographs for a future book of Paris parks, and been on press for his second publication, LA River.

While on a walk with Nellie this morning, I recounted last night's primal scream, and last year's documentary, RBG, which I had watched before I'd gone to bed. In it, badass Chief Justice Ruth Bader Ginsberg quotes Sarah Grimke (1792 - 1893) the American abolitionist, writer, attorney, judge and suffragette:

I ask no favors for my sex. All I ask of our brethren is, that they will take their feet from off our necks.

Recounting the quote made me wonder if my primal scream was more than mere sleep deprivation exacerbated by personal frustration over my son, but rather somehow collective. I imagined other mothers, wives, sisters and daughters shouting various objections about their burdens, their neglect, their abuse, their oppression. Perhaps, as Mary Oliver says in her exquisite poem, Wild Geese, they are out there wildly announcing their "place in the family of things." I don't know the answer, but I feel it when I talk with my beloved soul sisters.

Tonight, I'll be celebrating Michael's return. Tomorrow, he'll be back to cooking us fabulous dinners. As soon as the snow melts we'll be back to grilling outdoors and Calvin will again get to traipse circles around the yard touching his favorite mugo pine, rhododendrons and Alberta spruce. When the ground thaws, I'll be back to digging in the garden. With twilight coming later and later, I'll be staying up a bit longer, but I'll try to catch up on sleep when I can. I'll likely continue having meltdowns every now and then, but my husband, dog and child will, as always, listen without judgment, offer me love, support and forgiveness, and perhaps even understand my need to let out personal and collective primal screams into the world.

St. Cloud, Paris by Michael Kolster

nocturnal hours

It's hard to believe that five years have passed since I began making a THCA cannabis oil to treat my son's epilepsy. Shortly thereafter, I started the difficult and protracted effort of weaning his benzodiazepine, Onfi, aka clobazam. The endeavor took us four years, but we succeeded. What I find most noteworthy since starting Calvin on cannabis oil is that his daytime grand mal seizures—despite the benzo withdrawal—have virtually disappeared. The seizures, which were common in late afternoon, have been largely limited to nocturnal hours; he has suffered only a handful of them during the day in those five years. Calvin's partial seizures, on the other hand, often come in clusters and often occur in the wake of grand mals, usually presenting in the wee morning hours, yet still nocturnal, as they did today and on most if not all of the past six days.

This spate of complex partial seizures is disheartening. For the past few months, the Palmetto Harmony CBD oil seemed to have reduced their monthly numbers from double digits down to three or four. Regrettably, however, as I have been increasing its dose, we have not yet seen them disappear as I had hoped. I might now know why.

Yesterday, after Calvin received a meningitis vaccination, I weighed and measured him. I've sensed he has been going through a growth spurt, but I was surprised to see he has gained nearly seven pounds and has grown over an inch since October. This rapid and substantial weight gain prompted me to slightly increase his bedtime Keppra to equal a previous level, effectively zeroing out one variable as I continue to titrate his CBD oil. My hope is that it will lead to better seizure control. I'll let you know.

This past week's nocturnal seizures have meant that I've been waking up between two and three-thirty and getting little if any sleep from then on. Sleep deprivation is a form of torture, spiking my despair, anger, impatience and resentment. And yet, when I pull myself from its grip, get some rest, take a shower, I can see my way out of its shadow and am heartened when I remind myself of Calvin's seizure-free afternoons. I am pleased with how quickly he now (usually) bounces back from grand mals. I'm consoled by the notion he is finally growing, is taking a fraction of the drugs he used to, is walking tall, standing steady, having fewer mood swings and tantrums, and is more often going to sleep when his head hits the pillow. And though I still have to get up in the middle of the night, watch him seize, deal with the aftereffects of grand mals, change poopy diapers, dress, bathe and feed a fifteen-year-old, I can say with confidence that my boy is easier to take care of these days.

Photo by Phoebe Parker

pent up, awaiting escape

In so many ways Maine was not made for someone like me, for a fair-weather chick with a disabled, chronically-ill teenager who can't manage to walk all by himself, let alone in snow or on frozen tundra. And so every long, Maine winter we stay pent up at home when outside it's five or twelve or twenty or thirty-eight degrees. Frozen seas form in the wake of torrential sleet and rain, sheathing the earth in ice and crusting up pathways. Time outside is impossible for my child in conditions like these.

Yesterday, I wept in Michael's arms, lamenting this feeling of imprisonment, stuck in this place with a kid like Calvin who too often has seizures. I wished I were in California. If we lived in San Francisco—home for Michael and me in our late twenties and thirties—we could take Calvin anywhere quite easily on streetcars, on Muni trains, on buses, on the subway. In minutes we could be padding in the sand aside the Pacific, eating pizza in North Beach cafes, searching storefronts for the best dim sum in Chinatown. Year round there, days are mild and glorious. Parks, cafes and museums are numerous and bustling. Art is everywhere. Vistas abound, begging possibilities.

Here in Maine, January began well; Calvin had only two grand mal seizures by the sixteenth. However, the past two weeks have not been so good. Calvin has had at least five days with seizures in that span. He has stayed at home from school too often. His nurse called in sick. Monotony and melancholy set in. Worry knit its way into my brow. Sleep escaped me, though not from insomnia.

Understanding my despair, Michael came to the rescue as if for a wake, bearing extra attention, tenderness and understanding, and by delivering from "his" kitchen, multiple delicious dinners.

Today, as I look out over the back yard I see a veritable glacier in sun and shade. The rhododendrons have curled up, some tight as toothpicks, amid the frigid temps. All I can think about is spring and making escapes. Maybe I'll take a train south to see my sister. Hopefully I can get back to New York in May. In fall, I hope to make another a trip to San Francisco; too many things I missed while there last spring. All these journey's I'll do solo while Michael stays home taking care of Calvin. We can't easily travel as a family and still manage to enjoy ourselves, the places, our friends and each other, restricted as we are by our difficult boy and his needs.

On the phone yesterday with my dear friend Heather from California, she reminded me that every single day I take care of a sick child. Although I know this to be true, sometimes I forget, probably because Calvin has become my new normal. And though I love him to pieces, he's in great part why I often feel lost, stuck, hopeless.

Despite the fact it's windy and twenty-three degrees outside, I sit here on our green couch soaking up sun rays while trying to remember we're headed toward spring. Maybe it will arrive early. Perhaps we won't get much more snow. Hopefully, with more CBD oil, Calvin's seizures will continue slowly trending further downward. Perhaps I'll get more sleep.

And maybe, just maybe, come spring I'll escape.

Photo by Michael Kolster

sleepless dreams, stardust and carbon

another sleepless night without real dreams. my son, every half hour sitting up in bed and banging. sometimes cackling. tonight doesn't look too good for us or him. hours later, about to drift to sleep. that's when the squirrels begin gnawing and scratching in the eaves. the sound is unsettling. michael pounds the walls hoping to disturb them. i pray calvin stays asleep. at three a.m., just after finally going under, i hear the scream. this time it's muffled and brief. still, i know its meaning: our son is seizing. we rush into his room. unhook his bed's netted canopy. let down the safety panel. protect his spasming head and wrists and feet. call his name trying to reach him in his seizure-dream. blood and saliva begin trickling from between his lips. when it's over, i gently nudge his mouth open to find the wound. a bitten tongue or cheek. a pool of blood lets loose a scarlet stream. i think of rivers rushing to the sea. i stroke his moonlike face with love and sorrow. then i slowly syringe cbd oil inside his opposite cheek.

before i crawl in with him, i drink a glass of water and pee. outside, it's crisp and black and in the teens. pinned in the sky behind the glass i see orion. i think of emily's little ronan, gone now for how long i don't remember. i used to see orion as his guard. perhaps he's out there in the stardust.

in bed with calvin. michael tucks in a pair of curled-up bodies. in my arms calvin goes to sleep. for me, shut-eye remains elusive. in darkness, i think of little charlotte who has influenza and is fighting off pneumonia—a grave danger for our fragile children. i send a little mojo off to colorado.

my thoughts tumble to our mate who died last august. in our care, he left behind stacks of plastic bins and cardboard boxes. clothes and tools, gloves and socks and shoes. in my sleepless dreams i'm back to sifting through them. a wide-brimmed hat with snaps attracts me. my head is swimming in its blackness. in search of him, i sink my nose into a dress shirt. it smells of soap and plastic. i find him nowhere in its cool soft fabric. it hurts to miss him. he was like a brother-son to me. he has returned to stardust. never again to feel pain or be sleepless. now he is beautiful carbon. he wore that color often. he chose it.

it's not long before my boy awakens. just as my sleepless mind is dreaming of our new year stroll beside the ocean. we were three, not counting calvin. in a perfect world he would have been there with us, skipping, running, tempting white waves crashing at his feet. sprinting up then boomeranging with some precious found thing. a rock. a shell. driftwood. a reed. i picture him making long shadows and sandcastles and scraping his name into the beach—as many grains of sand as stars and planets. but he cannot do those things. instead again he stayed at home, his brain planning its next assault on him. i can smell impending seizures on his breath and fingers, on his drool-soaked shirts and robe. still, we can't escape their orbit. my billion-year-old carbon child, though reeling through his life half-blind with seizures, is not yet stardust. he's there at home to greet us. i hold him closely. i dream of calvin even when i'm sleepless.

glimpses

Before he came into the world, I used to have glimpses of myself with him as a baby at the beach, the two of us plopped on a blue and yellow sunflower blanket, his blond curls caught by the wind. Imagining him older, I'd see us walking silently through a pine forest, looking up through the trees, watching for woodpeckers, hearing the creak and squawk of rubbing branches in the canopy. At some point I thought perhaps we'd fly with him to New York, to France, to Italy.

Now I walk alone with my dog Nellie across a vast field, tears trickling down my cheeks. I call her and she runs to me. Half-heartedly, I play hide-and-seek. She understands and can do so much more than her human brother. I get glimpses, but mostly I feel so little semblance of what I think parenthood must be. My fitful grief gets all balled-up with loss of hope, expectation, ambition, dreams.

It was hard enough knowing much of his brain's white matter was missing. Worry. Then my planned cesarean turned into an emergency. Fear. Then he needed help breathing and eating. Anxiety. Then he failed to thrive and barely develop. Guilt. Then we learned he could hardly see. Despair. It took him years to crawl and walk, and he has spoken just a single word—Mama—once. Misery.

Then he started to seize.

We keep him alive. Keep him fed, keep him warm, dry and clean. Try to control his seizures. Like any parent, we love him immeasurably, but beyond occasional smiles and giggles, there are very few glimpses of normalcy or happiness in our infant-toddler-teen.

In my lowest moments I think of good, productive and exciting lives wasted on years of soiled bibs, dirty diapers, sopping garments, sleepless nights, hopeless futures, monotony. Had our son been born healthy, I consider the freedom we'd be moving into with a child old enough to be alone. I juxtapose that glimpse of liberty with a heavy one of wondering how long my body and spirit can withstand the burden—my child's weight, his restlessness, his seizures, his behaviors, his need. I glimpse that burden in the mirror. I feel his trouble settling inside of me.

rough patch

Throughout the film Tully, watching her I saw myself in a thick, frumpy Charlize Theron screaming at her unhinged kids from behind the wheel of a car. I saw a slice of my life in nearly every one of her scenes—moaning in pain from engorged breasts, wincing at cracked nipples, slouching hopeless in a robe with a frowning mouth and sleep-deprived eyes. I watched her chop food into bite-sized bits, neglect housework for days, advocate for her "quirky" child at an ill-equipped school, field scowls from disapproving strangers, surrender what had been an exciting life to be a devotee of family and home.

In any given month our son suffers more than a handful of seizures, countless manic outbursts, tantrums, restless days and nights, the occasional night terror, and—for me—incessant monotony. As Calvin's mom I likely suffer from what other mothers of disabled epileptic children sometimes call Persistent Traumatic Stress Disorder—stress resulting from the accumulation of past and present strain plus the dread of a bleak future for ourselves and our children.

When I see friends around town, having read my blog they often say, "Sounds like you guys are going through a rough patch." What they may not realize is that this rough patch has lasted fourteen-and-a-half years. Since two weeks before Calvin's birth, when we found out he was missing a significant amount of the white matter in his brain, the burden hasn't let up in any substantial ways. Furthermore, outside pressures—reeling from a friend's suicide, confronting maddening issues with Calvin's school, the difficulty managing his illnesses, the lack of a nurse to help us a little, the current circus-of-an-administration and it's shameful treatment of a sexual abuse victim—add to the strain.

Today, I'm at home with a sick kid who, as a result, had grand mal seizures on consecutive days. He isn't eating or drinking and can't tell me what hurts, nor can he seem to remain calm for more than a few minutes before getting up and pacing restlessly.

So, I guess—like Charlize's Tully does—I should admit we're in a bit of a rough patch. I should soldier on through it, relax once Mary gets here to help us out so we can go celebrate our anniversary, and remember that tomorrow is a brand new day.

Photo by Michael Kolster

joy ride

Red-eye flights are aptly named; mine came in this morning at just after seven. I returned from a short trip to Seattle, having stayed up past midnight one-too-many days. It was good to get away, though I had too little time to see everyone I wanted to see, and re-entering the atmosphere that is all-things-Calvin has proved a bit trying, particularly when it is his third day in a row of seizures, humid, and ninety degrees.

My trip was relaxing and invigorating. I spent some time driving around my old suburban digs—the pool where I spent all of my summers, the brand new high school, the house I lived in from the age of two until twenty, which now seems a dwarfed and somewhat dilapidated version of the one I remember, the pond where I used to catch frogs. The place had changed and yet, in ways, had remained remarkably the same.

I dined with dear friends whom I've known most of my life and who have kept in touch with me, noshed on homemade Indian food and pizza. I rented a car and cruised south to my nephew's wedding, met his new bride, sat and shot the shit with my brother Steve whose wit and humor I so appreciate. On Sunday I sipped a sidewalk bourbon at the Pike Place Market, ate roasted octopus and gigante beans in Adirondak chairs on the shores of Lake Union, strolled past sleepy Capital Hill mansions and—one of my trip highlights—rode the ferris wheel on the wharf drinking chilled white wine from a sippy cup. My other nephew and I scored some tasty shawermas on Broadway, satisfying a craving I've had since having left San Francisco seventeen years ago.

And though all that is a distant memory already, I'll still have etched in my mind forever the faces of people I love deeply, and the joy ride I took on a cool summer day in June, Seattle style.


from Christy Shake on Vimeo.

twice in a new moon

Skies opened up and I awoke. Rain beat down. I could hear my boy slap the wall between our rooms. We'd gone to sleep just before noon. What I had thought was a mere blink had actually been two hours. I dragged myself from bed with little strength, the days' exhaustion still lurking in my muscles and bones.

My boy had seized three days ago after having suffered an unsettling weekend and not long after a previous fit. Then, on the new moon, he slept all day at school. I analyzed the hell out of it all, wondering what to do.

Did he suffer a concussion when he fell out of bed on the nurse's watch, landing on his head? Is the extra magnesium causing a problem? Is he suffering a bout of benzo withdrawal? Might he be outgrowing his Keppra? Is he going through a growth spurt? Is he getting sick? Is his epilepsy progressing like I heard it can do?

As the deluge swept pollen into opaque yellow streams, I went to him and he smiled at hearing me. Seemed happy as a clam. The night before he'd seized again just after he went to sleep, his nighttime meds not having had a chance to kick in yet. Still, an unusual time for him. I'd been at dinner with a friend. I'd jumped when the phone rang. I resisted the urge to go home, knew Michael could handle whatever went down.

When I arrived home, my body still buzzing from moving to a live theater performance of the earliest songs of rock and roll, it was quarter past ten. I crept upstairs, pulled back the netting on our son's bed and squirted a dose of THCA cannabis oil between his lips. He stirred but did not wake. I repeated the task at two a.m., but at four he nonetheless woke to a partial complex seizure, heart pounding in his chest, Michael next to him. I gave Calvin another dose of oil and went back to bed.

Twice in a new moon my son seized. Thrice this week, making eight grand mals in a months' time, when one is one too many.

The skies, having gone blue for a spell, are darkening again. Bark is black. Grass is wet. My kid is eating and drinking again. I'm waiting to hear back from his Primary Care who fields my many queries about anything. I'm tempted to discontinue his magnesium; perhaps less is best. For now, anyway, we seem to have our son back—our drooly, animated, restless, affectionate boy who keeps us up at night when we should be sound asleep in bed.

Photo by Michael Kolster

how it goes

At two o'clock this morning I woke to my restless son needing to be laid back down and covered up because he can't manage to do so by himself. Just before falling back to sleep, I had to get up again half an hour later, then at three and three-thirty. Calvin's diaper was wet, so we changed it thinking it was the source of his restlessness. But with a dry diaper on, he remained antsy, so I crawled in next to him and put him in a "mama lock" (my leg over his legs, my arm over his arms with his head resting on the soft spot between my chest and shoulder) hoping this kind of body swaddle might ease his agitation. It didn't, and neither of us fell back to sleep until Michael rescued me at five-thirty when I managed to get a bit more shut-eye.

I wish I could say this was an unusual night, but I'd be lying. In fact, the lion's share of my nights are similar, at least when it comes to waking often to reposition him, which is why I am chronically sleep deprived. It's just how it goes.

While lying awake next to Calvin, I pondered the various remedies we've attempted to thwart his seizures and reduce his restlessness, plus some remedies we haven't yet tried. It occurred to me that I ought to look into making a second THCA cannabis oil by using an indica strain rather than a hybrid, for giving to Calvin at bedtime, since indicas are relaxing while sativas and hybrids are thought to be somewhat stimulating. Nearly five years ago I had chosen a hybrid cannabis strain called Chemdog because I wanted to avoid sedating Calvin during the day, and it has helped to quell virtually all of his daytime grand mal seizures. Now, however, I am wondering if the Chemdog, in the absence of the CBD (which we eliminated some weeks ago because it appeared to be triggering some of Calvin's complex partial seizures), might be causing some of his insomnia and restlessness. Up until now I was wholly convinced his restlessness and insomnia were the product of benzodiazepine withdrawal (I've read about this sort of thing happening) and while benzo-as-culprit still makes the most sense to me, perhaps I should be open to the fact that it could be something else all together, or a combination of factors.

So tomorrow I'll call Remedy dispensary and see what they might have in terms of a high THCA indica strain. Little doubt they'll be able to help me out, and if so, I'll make the oil, give it to Calvin at bedtime for awhile and see if his sleep and/or seizures improve. If not, my next strategy is to introduce a CBDA oil that I've enlisted someone to make for him.

As always, I'll let you know how it goes.

Making my THCA cannabis oil

cbd update

This morning's deluge feels apropos after weeks of poor sleep and the stress of deliberating the next step in Calvin's epilepsy regimen; I felt the need for an emotional cleansing of sorts. After much inner thought and analysis, some discussion with Michael and a little with his nurse, I decided to discontinue Calvin's small dose of CBD cannabis oil, at least for now.

The change in treatment, which I commenced yesterday, came after too many nights of a restless child who'd sit up and whack his head against his bed's safety panel every ten to thirty minutes on average. Every time Calvin does this one of us has to get out of bed to go lay him back down and cover him back up. This can happen close to a dozen times each night, depriving us all of sleep. A couple of weeks ago I began wondering if, perhaps, this behavior could be due not only to Calvin's benzodiazepine withdrawal—he had his last dose just over a month ago—but to his CBD cannabis oil. I came to this conclusion knowing that CBD and benzodiazepines like Onfi, the one he was on for so many years and weaning for nearly four, utilize the same liver cytochrome P450 to metabolize and, thus, interact with each other. It occurred to me that in Onfi's absence, the CBD might have the latitude to act differently. 

I went onto social media and posed the question—whether CBD can seem to cause restlessness, agitation, insomnia or problems getting to sleep. The answers I got were mostly "yes" including various accounts saying that large doses of CBD are sedating while small doses of CBD can alert or stimulate. Some parents advised not to dose it after four or six p.m. Others said it depends on the strain, confirming what I know about sativas and hybrids being more stimulating than indica strains.

Having cut Calvin's CBD dose in half late last summer and again last fall, I noticed a reduction in partial complex seizures. In eliminating his CBD I hope to see less agitation, improved sleep and perhaps even fewer partial complex seizures. We will see. As always, cross your fingers and knock on wood. You'll be hearing from me.

Photo by Michael Kolster

hemmed in

If you look closely, you'll see me in there somewhere, the edge of my mostly-auburn hair mingling with leaves and twigs, baggy bloodshot eye, wearing my shabby blue fleece robe that our neighbor thinks makes me look like a ward from an insane asylum. His estimation is fitting. One of us might be heading there, Calvin or I.

After yesterday's string of partial complex seizures—one every hour from eight-thirty until two—Calvin was impossibly restless on either side of last night's grand mal. This morning he is still unhinged, his repetitive humming and growling having not let up after hours on end. The kid is certifiably nuts, and he's sending me there. Both Michael and I tried sleeping with him, hoping to calm his inner demon so that everyone could get some rest, but because of Calvin's derangement, which must be some sort of benzo withdrawal symptom, sleep proved elusive for all of us ... again.

While walking Nellie yesterday in near-freezing, bone-chilling winds, I sat on a stump in the sun. It was then that I noticed my right eye hurting. That morning, Calvin had inadvertently stabbed it with several rigid fingers. Each time I blink, it hurts. Squinting, I looked out over fields, still covered in snow and flanked on all sides by naked oaks, maples and white pine of the same size—a wall of trees, really. Much of Maine makes me feel this way: walled in. These parts are mostly flat, and considering how close we are to the ocean as the crow flies, it takes some driving to get to a place with a decent vista much less a wide beach or clear view of the open sea. The experience I have at home raising Calvin, hemmed in by these four walls and by his condition, is the same one I have in Maine. I think I'll call it hemmed-in syndrome.

Perhaps if I were younger and not in love I'd run away from my reality. Last night things were very nearly as bad as it gets save trips to the hospital or the hours of night terrors Calvin sometimes suffers and we somehow cope with. It's these times when I imagine leaving my family behind and escaping to a place with mountains and hills right in my backyard, with ample and easy views of horizon meeting sea, of endless beaches minutes away and springlike weather year round. I'd go somewhere cosmopolitan where throngs of people busy the streets, where restaurants are bustling, where there are decent cafes and gorgeous parks in which to linger and explore, and interesting neighborhoods through which to tread for hours. I'm talking about a place like my beloved San Francisco. Maybe even LA. Perhaps some day I'll get back there and stay.

But for now I am here at home, today with my manic child. In doing endless loops with him around the house this morning, he stopped and I stood to block his incessant staring at the sun. Looking up, I saw this photo on the wall, one Michael made a couple of years ago. In its glass I saw my reflection, though dark, as well as windows through which I could see trees and light from outside. I exchanged tepid coffee for camera to capture the image. Then I dove into the windy scene of branches, leaves and sky—but for a divine moment no longer hemmed in—becoming a virtual traveler through time and space to a place without Calvin or angst, sleeplessness, seizures and mania, far beyond these walls which hem me in.