gravity

I wake at four o'clock to the sound of Calvin rustling in his bed. It has been eleven days since his last grand mal, a fairly long stint for him. He's been ramping up for the past few days. He spends our morning car ride grousing. Doesn't want to eat the cut-up pieces of cheese, fruit and meat which I hand back to him from the driver's seat. We've only been on the road for a short stretch when I turn around and head back home. I think maybe if I give him an extra Keppra it might take the edge off and keep him seizure free like it seemed to do in the gravity of the last new moon.

gravity: downward force. pull. heaviness. profundity. dreadfulness. solemnity. magnitude. weight (of a situation or mass.)

Upon arriving home, I catch my friend Collin dropping off another dozen pastel teal and tan eggs from her hens. Masked-up, we stand in the front yard visiting for a bit, something we've regrettably never done before. We talk about our same-aged kids, about school and/or lack thereof. I tell her that Calvin had just been going berserk, as if ramping up to a fit. As a professor of earth and oceanographic sciences, she wonders if he might be suffering the effects of the oncoming storm. I tell her I wonder the same thing, whether the barometric pressure squeezes the cerebral spinal fluid in his brain's enlarged ventricles like water in a balloon, like the full and new moon's gravity affects the tides, and seemingly seizures too. 

pressure. tempests. gravity. seizures. inner and outer space (of a situation or brain.)

The other night, Michael and I watched the film, Gravity. I remember having seen it the first time in a theater where we watched it in 3D (could that have really been eight years ago?) It was thrilling and chilling and at times made me weep. Watching the trailer still makes the invisible hairs stand up on my forearms. I remember wondering why the film had so haunted me, until Michael pointed out the gravity of our own situation since Calvin's birth—being launched into the great unknown by a boy whose newborn face reminded me of the moon. I hear the protagonist's plea when spinning in a vortex—what do I do? what do I do? As the mother of a child like Calvin, I can deeply relate.

breathless. frightening. hopeless. helpless. anxious. tethered. untethered. stressful. isolated. free-falling. relentless.

I read somewhere that space has no temperature, and that in space bodies don't immediately explode or freeze. Somehow, knowing that feels comforting to me. Then I think about my son who is at once alien and familiar. Like in some episode of the Twilight Zone, he regularly sends me reeling. But he is also the one who grounds me with his otherworldly gravity. His hugs and smiles thrill me and sometimes make me weep. I'm hopelessly tethered to this earthly urchin who keeps me moored to a mundane landscape (of a situation or place.)                                                                                                        

             

treading water

another good soaking. all day long. water gurgles down storm drains to who knows where. i wonder what it's like down there. above ground, cars swish by in rivers. just like on my morning drive. lots of ruts and muddy puddles. on the backroads today i see exactly no one. makes me feel somewhat alone. but freedom and comfort come to me in radio songs and thoughts. any musing or channel i want. tank full of gas. my kid in the backseat playing with his bare foot and trying to chew on his sock. happy and calm. my trusty dog along for the ride. i consider my luck.

on the drive i think about running—away. past. into. from. i see white caps off simpson's point. the sea is seething. i feel it. our vaccine rollout is now based on age alone. talk about marginalization. the most vulnerable treading water—indigenous, black, brown, poor, disabled, chronically ill like my son. dying at two to three times the rate of others. as if life in this pandemic wasn't hard enough. a year of escaping each wave, of perhaps being swept away with half a million others in the grip of this viral tsunami. i think about privilege, its pastels and able-bodied shapes. must the rest of us crouch in the margins until summer? is that the american way?

but beautiful colors are beginning to emerge from winter's white and gray. the burgundy and bronze of small-leaf rhododendrons. the acid-green of mop cypress. the copper of fallen pine needles. the chestnut of wet bark in rain. mist is about to rise from the fields. february is melting into march. spring awaits us.

white skies blind at twilight. i walk the dog in the rain. ice and snow become reflecting pools. streets are half flooded. sidewalks are glacial in places. i trudge down the middle of the road. kick a sopping glove to the gutter. where is its partner? one driveway down, a crusty knit hat thaws out. who is its owner? not a soul to be seen except the fedex driver. he slips on a wet metal step at the back of his truck. catches himself. i ask if he is okay. "that was a close one," he says, as if to himself.

the moon is full. i can feel it in the way my son clutches me. in his intensity. can see it in his face this evening. in his aimless pacing. i wonder if a seizure is on the way. does he just want out—of this rut, this pandemic, this house? like the sea, i feel him. tethered together, we tread water. thankfully, i can do it forever.

Photo by Michael Kolster

celestial bodies and monsters

This morning at 3:01, something woke me. The room was silent—no dream-yelping dog, no beeping, booming recycling truck in the adjacent parking lot, no gaggle of chatting college students passing either side of our house, no snow plows thundering down the street, no pre-dawn runners to jog me awake. It was so quiet, in fact, that I could hear my heart beat blood through the veins and arteries in my neck, could seemingly hear the buzz of molecules surrounding me. When I went to check on Calvin, he was lying on his stomach pressing his eyes. His hands felt clammy. Only then did I hear his telltale exhale and gurgling gut, hallmarks of a focal seizure. It wasn't the slight sounds of the seizure that had roused me. Most likely I had simply felt and expected its arrival.

After dripping a therapeutic and prophylactic syringe-full of homemade THCA cannabis oil into the pocket of his cheek, and changing a wet diaper, I went to get a drink. Out the bathroom window I saw a hazy, moonless sky with just one visible star flickering above the treetops to the west. I was aware the new moon was out there somewhere, its strong gravitational pull perhaps working on the fluid in my son's brain as if tides in a marsh. At least that's how I imagine it. I'm not ashamed to say at that moment I felt contempt for the celestial body.

I've always wondered about the anecdotal incidents of increased seizures during full and new moon phases. I mean, the brain is made up of some eighty percent water. Why shouldn't it be tugged into fits by the moon's gravitational force? Perhaps that gravity is also why my kid goes so berserk in the waxing and waning of full and new moons, like the monsters and werewolves of folklore are known to do, (and perhaps some mothers.)

As I laid awake, I continued to muse on monsters: epilepsy; coronavirus; lying, violence-inciting, fear-mongering, greedy, power-lusty politicians duping thugs into marauding the halls of congress to terrorize and disrupt our precious democratic process. Clenching my teeth and clutching my pillow, I wondered if there had been a full or new moon on January 6th which might have contributed to the mayhem at the Capitol. But, no, these were just angry, deceived, resentful people instilled with a sense of entitlement. Rapidly, my thoughts returned to Calvin, the sweetest boy in the world whose brain was just under assault, and I wondered, what happens to people?

Finally, I began to drift off with the hope that the seizures—Calvin's and the January 6th one of our Capitol—were one-offs and not the beginnings of insidious clusters. And as I faded into the blackness of sleep, my mind still on monsters and celestial bodies, I heard the radiator creak, knock and ping, my son whimper and fidget, and my dog yelp in her dreams.

Another such morning

seventeen

seventeen years ago today, calvin was brought into the world. a full moon triggered him into existence. six weeks early. several days before a planned c-section in boston. on the heels of an ice storm. that's just how he rolls.

one o'clock in the morning. waking on a sheet soaked with clear fluid. remember dropping the f-bomb. quickly donning sweat pants, favorite boots, puffy coat. grabbing toothbrush, hairbrush and wallet. michael kicking open the ice-encased mudroom door. icy-black night. eerily quiet. rooflines, trees and power lines dripping with frozen crystals and diamonds. otherworldly. cold and still and strange as mars. breaths making frost inside of the car. traffic lights flashing caution reflecting as snowy yellow pools. desolate streets. feeling desperate and alone, but not overcome.

medivac helicopters grounded due to the storm. boston no longer an option. local hospital unable to deliver a preemie like calvin, his brain malformed. having nanoscopic contractions. thirty-five-mile ambulance ride to portland. its jangling chains like some kind of omen. pre-dawn arrival at the hospital. reciting, for the umpteenth time, history of my uneventful pregnancy up until the shocking sonogram. recounting our day-trip to boston—the diagnostic tests and specialists, theories, plans and strategy. silently doubting the small-city hospital. no donor platelets in case calvin bled. extracting mine by pheresis in case he did. blood sucked from one arm, centrifuge-spun, then pumped back into the other. too few remaining platelets for a safe epidural. only option: general anesthesia. michael forbidden to be by my side meant neither would witness our child being born. remember holding his hand until we were torn. wheeled away on those waxed linoleum floors. wondering if i'd see him and calvin on the other side of anesthetic, c-section void.

operating room just as you'd imagine. sterile and cold. ample plastic tubing and chrome. aluminum tanks, bright lights, monitors and leads. sharp, shiny instruments, white cloths, blue sheets. naked and shivering under a gossamer gown. stainless steel table a shock to my body, like putting a tongue to a frozen pole. nurses shuffling about, lovingly touching my arms. doctors' voices attempting to calm. gas mask in place before passing out.

michael held calvin within minutes of delivery. whisked away quickly to the NICU. at my first glimpse he was twenty-one hours old. my morphine fog kept us apart. he slept in a plastic isolette like a dozen others. a giant among them, weighing just under five pounds. i couldn't yet hold him. tachycardia. trouble breathing. animal surfactant. ventilator. C-PAP. monitors. tape. leads. head no bigger than an apple. sweet, wrinkly brow. thin, pinkish skin. a nose so familiar. precious little bundle. he opened his eyes for the first time when i called out his name. he recognized my voice. that was his beginning. today he turned seventeen.

double whammy

Blame last night's double whammy on the arc of the full moon. Blame it on a low-grade fever or virus. Blame it on sleep deprivation or anxiety, the barometric pressure or gravity. Blame it on a lack of fluids, a dip in blood sugar, pressure or O2. Blame it on the protracted effects of benzodiazepines which should have never been prescribed for my three-year-old. Blame it on the weight of the world, the scourge of hateful rhetoric, the insanity of deceit and greed, the power of willful ignorance, the threat of war. Blame it on injustice. Blame it on the patriarchy. Blame it on the pharmaceutical industry. Blame it on the superficial solace of the stock market. Blame it on yesterday's regrettable IEP. Blame it on the vacuum of Daddy's absence. Blame it on the warm front coming, and being trapped indoors. Blame it on his brain's messed-up pathways. Blame it on growth spurts and raging hormones. Blame it on the vile nature of epilepsy. Blame last night's two grand mals on anything and everything.

Calvin's grand mal seizure from eight years ago; some things regrettably never change.

             

beside ourselves

As sure as the new moon's looming arrival, I sensed my son's impending grand mal. Yesterday, my boy and I were both beside ourselves—he agitated and wired and I, as a result, flustered, anxious and distraught—trapped in a vicious cycle of his disturbing behaviors begetting my tension, perhaps begetting his stress and perhaps begetting a seizure. But who knows? Maybe this is just how this effing epilepsy rolls.

Nevertheless, I try to put my best effort into remaining hopeful that we can find a therapeutic sweet spot of CBD that eases Calvin's seizures. So far, the Palmetto Harmony seems to have done a decent job of quelling Calvin's partial complex seizures and, for a time, I was sure it was reducing his grand mals. But three grand mals in a span of thirty days between mid December and mid January has since doubled back to his previous average. No doubt, the uptick is depressing.

Amid this constant doubt and worry, I try consoling myself, knowing that his grand mals are self-limiting, that the convulsions don't last more than ninety seconds. Nonetheless, they are distressing. I try to console myself knowing that his overall number of annual seizures is gradually decreasing, in spite of the fact he is no longer on the benzodiazepine and is taking far less of my homemade THCA oil. I try to console myself by remembering how utterly unhinged Calvin used to be on high doses of three antiepileptic drugs several years ago. Granted, he suffered a fraction of his current number of seizures back then, but his behavior was unbearable for us—then, far harder than the seizures—and I cannot imagine he felt very good. We'd see him regularly crawling out of his skin, virtually without respite.

I try to console myself by the mere fact that we did not have to cancel a gathering of some of our favorite people to salute Calvin's upcoming birthday. Despite Calvin's downward spiral yesterday—and owing to our son's wonderful caregivers—Michael and I cleaned house and put out a modest spread, gussied up, cranked the disco, rock and funk, and stayed up late chatting, laughing, snacking, drinking and dancing. Letting loose with beloveds proves to be one of life's best elixirs for casting out the mean blues and reds. Within minutes, I de-stressed.

Just before five a.m., however, after far too little sleep, Calvin seized. Michael dabbed the blood trickling from between our boy's lips. I gave the little guy his CBD oil then crawled in his bed and held him close to me. He quickly fell back to sleep. An hour later he woke up agitated as he often does in the wake of a grand mal—eye poking, "ooh-oohing," sun-staring, tossing, banging, restless beyond measure. Too soon, I lament, to be beside ourselves again.

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

a new view of the moon

I used to love the moon. When he was born, Calvin's face was moonlike—round, bright and creamy. Though I have developed a more complicated relationship with it since Calvin began having seizures, which sometimes seem triggered by the full moon's intense gravity, I still love the moon. Today, I appreciate it even more having seen this three-minute film reminding me of its beauty.

I was weeping long before the film maker said the words, "We should look up more often." Yes. Yes we should. And realize we all live on one Earth, and that life here is short.


A New View of the Moon from Alex Gorosh on Vimeo.

full moon fit

Last night, when the full moon was at its peak in the sky, I watched my son while his father held him as he seized. It was an unusual time for Calvin to have a grand mal, and had Michael and I not stopped giggling in bed, we might not have heard it at all. At first I thought the sound was Nellie licking herself, but when we quieted I recognized the rhythmic smacking of Calvin's lips.

Unlike most nights, I hadn't fully expected this one; I was sure Calvin would make it to day ten without any seizures in between. He'd shown only a few of the harbingers that ring them in.

Still, nine days without any kind of seizure isn't a bad stint compared with at least half of Calvin's last eight months. But it isn't long enough to be sure that the new CBD oil we switched him to, the one with slightly more THC than the last one, is doing any further good. What I am interested in seeing is whether this new oil from Haleigh's Hope might help limit the partial complex seizures Calvin is prone to having in the hours and days after most of his grand mals.

What does seem somewhat clear is that the new concentrated THCA tincture I made a few weeks back does appear to thwart his grand mals to some extent. Typically, when Calvin has a grand mal before midnight, he almost always wakes later to a second one. This time, having given him doses of the tincture just after the seizure, then at 1:30 a.m. and again at 4:00 a.m., he did not have any more.

My boy is still not back to baseline, and the last time he had an evening grand mal he suffered two more the next morning. So we'll sit tight here at home today, giving him a tiny bit extra THCA, thankful that the moon has entered its waning stage.

Photo by Unknown

gravity and more

Perhaps it's the gravity of the full moon that puts the world off-kilter and sends things spinning.

In the hours before the moon began to rise, my boy showed every harbinger of a grand mal: grousing, manic outbursts, foamy drool, rashy buttocks, shrieking, cackling, dropping down, huggier than usual, incessant eye poking. I had no doubt that, like the moon, a seizure was on the horizon.

At two-forty in the morning the seizure took grip, Calvin's telltale guttural scream announcing its arrival. His convulsions lasted the typical ninety seconds. I gave him his clobazam early. We changed his diaper. I crawled in bed next to him. I didn't get any sleep from then on.

I had seen the moon out the bathroom window thirty minutes before Calvin's fit. It hung there in its ominous beauty, partly shrouded by passing clouds like in so many horror films. I closed my eyes and imagined extreme tides, the women giving birth that night, the children having seizures, the folks doing dangerous and threatening acts—all things the full moon is thought to induce. I recounted the day's news of unhinged, ignorant, egomaniacal presidents, nuclear warheads, category-five storms, immigrant children—the best of the best who know no home but this America—threatened with banishment, and I wondered if the moon's gravity somehow yanks the egos and eccentricities of certain jackasses in power. But then I thought better, knowing full well that jackasses will be jackasses no matter the planetary alignment.

And then I heard the three-thirty train coming through. It rolled on by slowly, the grind and bump of its steel wheels percussively churning like drums. I imagined the engineer tugging on a cord to sound the whistle. This one does it with finesse, I thought. I've heard it before. It starts with a softness then gradually crescendos—not too loud—before falling off into the pulsing of the wheels and of my son's heart. The other drivers seem to thunder through town, blasting their whistle time and again like a child at the helm, or some reckless president. My engineer is a musician, the whistle his or her orchestra. No wonder they call them conductors, I thought, just as I realized I was drifting off to sleep, before that very realization roused me again.

Earlier in the day Calvin had had his first day of seventh grade. I met him at school, stayed a while, gave him his lunchtime meds. On the way back from the cafeteria we met throngs of students. I regarded the children, skinny, shoulder high and taller, seemingly twice Calvin's height. I saw my friend Andrew, the social studies teacher, and thought about what his students will be learning this year. You can really teach these kids things, I said to myself, both in remembering myself at that age and conscious of how little my own boy has been able to master, then followed the thought with notions of truth, virtue, kindness, compassion, inclusion, selflessness, charity. Then I wondered where people learn to be greedy and lust for power, wondered where they learn to fear and hate other.

As the moon slid behind some clouds, perhaps covertly tugging Calvin into his grand mal, I laid there hoping the next hurricane, Irma, will spare my in-laws in Florida, hoped the Dreamers will be free to stay, hoped that Kim Jong-un and Trump will see the gravity of their actions, agree to put aside their egos and put down their arms. Seems like peace between nations of our Earth should be ridiculously simple. Perhaps it would be in a world where Venus had more pull.

perfect storm

The sum of a raging blizzard plus low barometric pressure plus a large waning moon in the sky overhead on the morning of day ten plus a recent benzodiazepine reduction equals my son's two-minute grand mal seizure at four a.m. Thankfully he's already on the mend.

summer storm

Summer storm falling on a red metal roof, fat drops raining in a steel pale. Let the tops of windows stay open. Feel the humid breeze. We need to cleanse these five straight days of fits, a Saturday choked with wicked spells. I hope tonight my boy doesn’t seize again.

Within twelve hours we give him Diastat, extra Keppra, extra THCA and CBD cannabis oils. I even try a gum-rubbing of THC to stop the barrage of fits. Still, they march from dawn until nearly dusk, his lips taking on the pale of twilight in eastern Maine. In desperation, I give him a tiny, one-time boost of his evening benzodiazepine, just 0.05 milliliters, suspending the gradual wean, white-knuckle hoping it will break the chain.

At night the rain pours, dampening the sound from our son's room next door. I get up to check on him every hour or more and to pull some windows closed. At three-thirty he rouses, restless, and I wonder if the storm system and its low pressure affect my boy. Michael climbs in and embraces him, and they soon drift off to sleep, the pattering of rain on the red metal roof, the seizures waning with the moon.

full moon cresting

At four-thirty yesterday morning, the full moon a day from cresting, Calvin's grand mal seizure ripped us out of deep morning slumber. I had suspected its arrival because of his agitation and manic outbursts on Monday, neither of which we've seen much of lately. He's also sick with a stuffy, runny nose, which, like most kids with epilepsy, lowers his seizure threshold. He was quite lackluster, a bit spacey and very quiet, so I kept him home from school. The entire day he seemed in a fog, confused and walking in circles. Looking at his wan face, I had a bad feeling he wasn't out of the woods yet. At lunch, he nearly choked on a bit of sandwich, and he kept wanting to be picked up, both signs a seizure was headed his way.

Calvin's nurse and I conspired over what extra measures to take, if any, to avoid a repeat the next night and morning. We decided to take no further action since he'd already gotten some extra Keppra that morning and the night before.

Until yesterday morning, we had all enjoyed Calvin's longest grand mal-free stint in over a year: twenty-one days. I should clarify that I'm counting days between grand mals since those are his most violent and obvious ones. His partial complex seizures, parasites to Calvin's grand mals that began appearing again late last year, are often difficult to discern causing me to wonder if I am mistaking them for benzodiazepine withdrawal symptoms such as rapid heartbeat, hyperventilation, hallucinations and agitation. Sometimes, however, they are unmistakable.

Calvin slept well last night until just after midnight, the full moon mere hours from cresting, when he awoke to a complex partial seizure. I knew it was a seizure because his breathing stalled, he made the classic swallowing sounds and stared vacantly at his fingers. I watched his lips turn pale and his face flush. Fearing a subsequent grand mal, I ran downstairs and drew up a syringe of THCA oil and squirted it into his mouth, a strategy I thought I'd try in an effort to break the early-morning seizure cycle. Alas, after going back to sleep for a couple of hours, Calvin shrieked his way into a full-on grand mal. I attempted to employ a measure Michael had learned from Noni, a sage he met in Hawaii, to stop the seizure by applying pressure to the space between his upper lip and nose using the first joint of my index finger. The seizure, which had been running its course for close to two minutes, stopped within seconds.

As Calvin whimpered in its wake, we changed his diaper and wet shirt then I crawled in next to him and slowly but surely syringed in his benzodiazepine three hours early. This measure has in the past prevented further grand mals. Though Calvin didn't have another grand mal, he had two partial seizures later this morning. During the second one, which didn't stop with lavender essence or pressure under his nose, I gave him six milligrams of THC rescue med inside his bottom lip; the seizure stopped on a dime.

At just before noon Calvin seemed to be slowly returning to baseline, save a crusty nose. His nurse arrived and, seeing Calvin doing better, I took Nellie to the fields. On the way back I got the dreaded call; Calvin had had some sort of non-convulsive seizure, his lips turning blue, his eyes rolling back into his head, after which he wanted to fall asleep. Running out of options to stop the cluster of fits I decided to try giving him an extra dose of the new CBD oil we'd started using two weeks ago. Afterwards, he slept for thirty minutes or so and then, shortly after getting his four o'clock THCA dose, he had another partial seizure, perhaps before the ingested oils had had enough time to kick in.

Bent on avoiding a trip to the hospital I racked my brain for any maneuver we could use to prevent the cluster of partials rolling into a prolonged grand mal. I remembered I'd given Calvin his benzodiazepine three hours early, at 3:00 a.m., so at 4:30 p.m., an hour and a half before his usual dose, I gave him his clobazam and knocked on wood.

Now, the full moon having fully crested at noon, its gravity tugging hard on my son's delicate brain, I'm hoping Calvin's seizures, like the beautiful orb in the sky about which I'm so conflicted, will soon begin to wane.

Photo by Michael Kolster

moon river

Moon river, wider than a mile

I'm crossing you in style some day
Oh, dream maker, you heart breaker
Wherever you're goin', I'm goin' your way

Two drifters, off to see the world
There's such a lot of world to see
We're after the same rainbow's end, waitin' 'round the bend
My huckleberry friend, moon river, and me

As the moon floated in a dark pool of sky, day ten dipped into the twenties. Frost glazed grassy blades grown so long they laid down together in waves, like my husband spooning my son in the wake of Calvin’s seizure. Like so many wilted leaves shivering on the tips of bows stripped naked by cold and wind, inside, my son shuddered in his sleep.

These fits of his never get easier to bear, and in my trepidation I gave him extra cannabis oil at bedtime, then again at two a.m.. Before dawn, the seizure ripped through him anyhow, sending him to a place I fear, yet cannot fathom.

December’s bitterness kept us inside for most of the day, walking and crawling in circles, mounting stairs then descending again, my body a faithful shadow for my boy's incessant need to stare at the sun. Calvin never quite settled, his mind likely reeling from the surge of its electric storm and, too, the powerful drugs meant to stall its gale.

Day ten was one of countless I’ve lamented living in this prison—these four walls and the epilepsy itself—which holds us captive, unable to pursue a life outside certain margins. I thought of my brother and his wife who for years took care of my aging mother as she descended into Alzheimer’s mire. And, though I grieve Mom’s passing, I rejoice and simultaneously envy my brother’s release, and I wonder if Michael and I will be serving a life sentence caring for Calvin, never again to kiss foreign shores, see more of the world, or breathe the freedom of time and place to do as we please.

Still, Michael and I were able to escape for a spell, to steal away in the night and huddle around Lauren’s fire drinking warm glögg from mugs, eating figgy pudding and putting our feet to the flame until our soles began to smoke. When our backsides and toes were sufficiently cold, we bid our farewells to join a second celebration, the moon again on the rise.

At the second party, one of the hostesses greeted us wearing an exquisite squirrel-pelt frock she’d shortened a bit to fashion a matching stand-up cowl. With my hands clasped around her soft gray waist I was reminded of Capote and Hepburn's Holly Golightly, and Moon River began flowing through my mind. Amid happy hubbub, we helped ourselves to sandwiches and sushi, sake and champagne, and mingled and joked with more fine folks from town. Behind me, as I sat at the bar, a tiny baby was passed from one guest to another, each folding him gently in their arms. I spoke with his mother, asking how much the tot weighed.

“Eight pounds three ounces,” she said, beaming that her preemie was fattening up, now seven weeks old.

Calvin was just over half that when he was born, I thought, impossible to believe that I myself had held a child so fragile and small and that he’d survived the ordeal.

After some merrymaking and plenty of embraces we headed home for bed, tired from another early start to the day. Several times in the night I awoke to Calvin kneeling in his bed and banging its panel in a frenzy. Each time, I undid the safety netting, laid him back down and put my palm to his heart, which at times was racing in what seemed to be partial seizures or perhaps simply the wicked grip of benzo withdrawal. I gave him an extra dose of THCA cannabis oil attempting to avoid a grand mal.

At Calvin's midnight awakening, I peered out the window to see a mackerel sky, the moon a glowing stone in a river of drifting clouds, and I thought of Moon River again, and of how the song reminds me of me and my boy—my dream maker, heart breaker, huckleberry friend.

moon and mercury

There is the moon in a mackerel sky, staring down at me through gossamer clouds, the same moon illuminating the harbor masts not far from where my mother fell. It’s as chalky and round as the ball of a bone she broke, and the blood moon of the night before as full and red as her pain; perhaps its gravity brought her down. The surgeon cut below the break where he drove a metal spike, then fit a foreign ball into its joint. I wonder if she had an anesthesia dream.

As I glare skyward, I feel weary—all these years pocked with seizures, drugs and sleepless nights, counting them on calendars scarred with black and day-glo ink, splitting pills, pressing oils, weaning meds. My skull is full of woes of my mother's Alzheimer’s, my brother’s Parkinson’s, of friends’ children’s epilepsy and all the layers of senseless suffering in between for which no grand design exists, and if it does, it's sick.

The children, some huddled near my feet, ask after Calvin, tossing me epilepsy questions, pondering the mess of his pain and disability in classrooms mostly healthy, white and neat. Some of their faces are masked in fear and sorrow while others beam with enlightenment and hope. I tell them they can make a better world if only they'll embrace difference as much as things the same.

Dipping my lips in the sweet burn of bourbon, the moon and the mercury work their gravity sweeping my boy toward an epileptic fit. Outside, the storm rolls in, the mercury falls, its heavy chrome-like beads running into one thin strip. Finally, the sky swells and the rain thrums unrelenting, soaking withered leaves, quenching parched ground and bark. It reminds me of how, on the night of the blood red moon, I cried for the first time in weeks.

Photo by Michael Kolster

moon over my weary head

I wake before dawn, the moon hanging bright and low in a cold, clear sky. Its aspect alone, having recently been full, is cause for concern, seizures often nesting in the wake of the moon's apogee.

As Sundays go, the day is full, Michael’s morning crepes sweet as our happy boy. We head out to get provisions for a special dinner celebrating my 51st-and-a-half birthday, an excuse for Michael to sate my recent state of cake-on-the-brain. The Rosemont Market is open on Easter, a day we always forget, so we take a scenic drive south winding through pastures laden with mud and white slush. At the market a glut of cars chokes the road, several churches clinging to its route, so against a bitter wind we must walk our boy several blocks, remarking on how well he does. I wonder, with the moon and all, if it's just too good to be true.

With cause to celebrate and a fire in the stove, at home we crack open the beer and the bourbon early, putting a loud needle to Led Zepplin while Michael makes me a cake. It's proving to be a fine day, indeed.

By seven Calvin is in bed and our guests have arrived. I've caught a good buzz, which I don’t want to lose, and though it has been ages since I’ve been drunk—a feeling I don't adore—I pour myself another.

Over salmon and soba slathered in anchovy butter we toast the fact that the four of us are gathered around a table. We laugh and muse over the college and on writing, photography and the community of our dinky town in Maine. They sing me half of a happy birthday song before we dive into a candleless cake and, not long after we say our goodbyes, I'm happily falling asleep.

The moon low in the sky again, I hear Calvin shriek. I run to get the syringe of THC cannabis rescue oil, crawling in next to him to squirt it under his tongue and into the side of his cheeks. Within thirty seconds his convulsions stop and soon after he is asleep.

It’s day eleven and I can feel the moon, like a wave of stones, waning over my weary, worried, aching head.

Photo by Michael Kolster

the arrival

I arrive home, wipe my feet, pet Rudy, and sit down at my computer before heading upstairs to relieve Calvin’s nurse. It’s not quite four o’clock and for a few hours the sun has been melting the drifts and banks of snow that plague our town. Along the roadside the snow looks like decaying cinder block against streets scoured by sand and salt.

After sitting for a bit Calvin’s nurse shouts to me from his bedroom. He’s having a seizure. Within seconds I’m at his bedside as she lowers its safety panel. He’s been napping. His lips are aubergine, his body still, his eyes glass. It's been years since he's had a seizure at this time of day. Today is day thirteen, he’s got a runny nose, the barometric pressure is low and the full moon arrives tomorrow; the perfect storm has arrived.

When the seizure is over, it takes him a while to fall back to sleep; he always sleeps for at least an hour right after one. His blue eyes remain vacant and half-mast, and their blinking and shifting make me wonder if he has slipped back into another one. I ask his nurse to bring me the bottle of cannabis oil. She runs it up and with her help I squeeze three drops into his mouth. As she heads back down the stairs to leave I tell her that I love her, and she smiles knowingly.

I’m keeping vigil as he sleeps. Like a cherub, his lips are carmine, his cheeks chubby and pink and his arms frame his face above his head making him look like a cameo. He rests on a pillowcase printed with a colorful woodcut of the world that Nick gave him. I study the fish and the boat and the gull, all of which I’m fairly certain Calvin has never noticed—not the real ones either. I see the continents I’ve visited knowing Calvin will likely never step foot in them. I note the seas that I have crossed wondering if I’ll ever do so again. I regard the swirling waves that touch his fingers, which twitch like aftershocks in the wash of a quake.

Within minutes of giving Calvin drops of the cannabis oil he is fast asleep. His breathing is regular, his color good. We’ve made it this far, I think, considering what a long, difficult journey it has been, then I wonder if—and hope that—like this winter, we’ve been through the worst of it. At least for now we’re headed in the right direction.

tempests, moon and stars

It's a sick feeling, a gnawing pit in my stomach, knowing that my son is going to have a seizure—soon—but there is nothing that I can do about it. Today is day four: only four days since his last one and I can feel it approaching like a storm on the horizon, smell it like the rain in the air before a downpour. As for the weather, it's low pressure, which is when they often happen, and the full moon is hanging somewhere in the sky. So odds are, he'll have one tonight or tomorrow night, the next night at the latest, and we'll just hope that, like the others, it will stop on its own.

His right ear looks and feels like a red-hot poker. I seem to see this lately in the hours before a seizure. He is manic and irritable, even crying in fits and starts of frustration or pain or fear or I don't know what. I took him out of the bath after only a few minutes fearing he'd bust his cheek or break a tooth on the on the tub, he was so hyper. I feel like crying. He's such a sweet soul. There is nothing we can do.

But that paperweight, the one that spells HOPE, still sits on my desk as a reminder that we are days away from making Calvin's cannabis tincture. I have big hope. Hope that it will stop his seizures, hope that it will stop his drooling and his manic behavior, hope that it will help him sleep and make his tummy feel better, boost his immune system, protect his brain cells and give him a general sense of well-being.

Yep, the storm is on the horizon and the moon is full, but I know the tempest will blow on through, and if I can I'll lasso the moon in the form of an herbal tincture, draw it in close and drop it on his tongue like a golden star.

gift of a song

You are my sunshine, my only sunshine
You make me happy when skies are gray
You'll never know dear, how much I love you
Please don't take my sunshine away

The other night dear, as I lay sleepin'
I dreamed, I held you by my side
When I awoke dear, I was mistaken
And I hung my head and I cry

While sitting with my girlfriend beside a rolling fire, a bourbon in my palm, I hear my son sputter, choke and gasp for air. “That doesn’t sound good,” I say, and I sprint upstairs to see Calvin having a seizure in his bed. Teresa comes up to join me and we crouch at Calvin’s side caressing his face and body. In the dim light I can see that his cheeks are flushed and patchy, and he whimpers and clicks and swallows and whimpers again before trying to suck his thumb.

Teresa had arrived just before I put Calvin to bed. From upstairs I’d heard her let herself in, so I called for her to come up. Once upstairs she rounded the corner, greeted me with a hug then joined Calvin on the floor of my bedroom where he was mouthing his favorite toy, a plastic singsong book with a big yellow light-up button that, when pushed, says, “Hi there! Sing with me!” I watched her kneel down, pat and rub his back while talking to him. Her fearlessness and ease impressed me. “Very few people engage with Calvin that way,” I told her. “Most keep at arm’s length.” She went on to explain that her comfort level was probably due to the fact she sees Calvin so frequently at school, but I know differently. It’s just the way that she is. Open. Loving. Unafraid. Compassionate.

After Calvin's seizure, as she strokes his head, Teresa begins to sing You Are My Sunshine in a soft, soothing voice. It’s as if she’s done it a million times before. As I hear her words, her gift of a song, I realize that Calvin is my only sunshine, my only child, and even though he’s tough to take at times I know it’s not his fault. When she gets to the part in the song where it says, “please don’t take my sunshine away,” I find myself silently saying it with her, knowing full well epilepsy can do that sort of thing, can take our children away. Soon, Calvin's lids become heavy and we watch him drift off to sleep under the netted canopy, under invisible stars, under the waning moon that hangs in the sky overhead and under a velvet melody as if written just for him.

moon and stars

He howls as if at the full moon. It hangs in the sky like a weight, presses down on me. I used to be drawn to it, but now I feel only dread and wonder: dread for the seizures that seem to flank its coming; wonder at how it seems to tear and pull things apart then smash them back together. I see the moon in my son’s round face—his glowing complexion, his pools for eyes. I doubt he’s ever seen it himself, always drowning in a drugged-up sleep under its rays, never out at night gazing at the sky so full of stars, but which his weak eyes can’t possibly see.

Stars. What are stars? I cannot explain, cannot point in their direction or cast out a net to catch a falling ember before it expires. No star burns bright enough to inspire him to reach out and touch. Their points of light all dissolve into black, melting into the tops of trees and blanketing a field, a meadow, a sea. Stars mean nothing, reflect nothing, to a boy who cannot see them nor contemplate their mass or the spaces in between, nor know what is it to wish upon one that is falling.

photo by Jeff Berkes