hope and trepidation

Tomorrow morning, Calvin and I will finally make our way to Maine Medical Center for his endoscopic retrograde cholangiopancreatography (ERCP) meant primarily to remove at least one gallstone that is stuck in his common bile duct and which probably caused the excruciating waves of pain and elevated pancreatic enzyme that landed him in the emergency room on New Year's Eve. Calvin has likely needed this procedure for weeks if not months, but it has taken this long to get it on the books because—although every radiologist who read Calvin's CT scans and sonograms reported seeing at least one decent-sized gallstone—one of Calvin's providers wasn't convinced. Eventually, the procedure was scheduled, but then Calvin brought Covid home, and we had to postpone the operation a week.

The ERCP is not technically a surgery. It is an endoscopic procedure during which Calvin must undergo general anesthesia. The gastroenterologist—one of only two in Maine who has the skill to perform this operation—will insert a scope through Calvin's mouth into his esophagus to look for ulcers, etc., then go on to remove the problematic gallstone, perhaps having to widen the common bile duct so it passes more easily.

This will be Calvin's fourth time under general anesthesia. In the past, he has faired well, but the risk of dangerous complications is far worse for someone like him who is neurologically compromised and prone to getting pneumonia which, by the way, he was diagnosed with on New Year's Day. The last time Calvin had to have general anesthesia was last April during surgery for the hip he broke at school (a clean break at the base of the femoral head) when his aides let him walk around by himself and attempt to sit in a chair, which he most regrettably though not surprisingly missed (his vision and coordination are not good).

It is hard to put into words how gut-wrenching and nerve-racking it feels to watch your sweet, nonverbal, cognitively impaired child be wheeled down a hallway with a bunch of strangers into an even stranger room (operating rooms are cold, chrome, sterile places) without any understanding of what is about to happen or why, and without mom or dad by his side to comfort him. To say the experience is worrisome is an understatement. It is the cause of great trepidation.

And so, using the gastroenterologist's patient portal, I wrote to the physician who will be performing the ERCP:

"can i stay with calvin until he goes under general anesthesia?"

The doc replied within minutes, "yes. you can stay with him."

I breathed a sigh of (some) relief.

With any luck, the procedure will go off without any hitches, Calvin will make it safely out from under the anesthesia without aspirating or suffering from too much irritability, and we'll be home sometime tomorrow late afternoon or early evening. Hopefully, Calvin will get some immediate relief from the prolonged pain and discomfort that this gallstone has likely caused him and, hopefully, he'll be protected, at least for a while, from the dangerous sometimes lethal effects that gallstones can cause.

Sadly, Michael cannot join us because it has not yet been ten days (hospital protocol) since his Covid diagnosis, and because he'd miss another day of teaching; I urged him into staying behind. Thankfully, one of my besties, Barbara, is going to drive me and Calvin to the hospital in Portland, and another bestie, Matty, will shuttle us back so I can attend to Calvin's needs on the drive home.

Until then, cross your fingers and toes. 

Michael, in white, escorting Calvin as far as allowed before Calvin's hip surgery last April.

hard to cry

there's no sun due till sunday. for two weeks, i've been mostly holed-up inside. i feel the need to have a good cry. but somehow it's stubborn. hard to get out, though impossible to swallow. considering the state of things—putin's loathsome war against ukraine; musk's strong-arming of twitter; lying, scheming "patriots" in congress; a friend's premature death; grieving mothers, fathers, wives and children; calvin's broken femur and recent surgery—it shouldn't be hard to cry. tears should flow unrelentingly. but they're stuck somewhere in my thickening throat. i can feel them trying to push past my clenched teeth when i drift between sleep and dream, or suffer insomnia. sometimes a song will tug them along, nearly into existence—the soundtrack from melancholia; nick drake's river man; adagio for four strings. i so want the tears to spill. to let go from their headwaters, each holding a different emotion in its salty, quivering drop.

perhaps they're caught up in a knot of anger and resentment, despite the work i do to limit and loosen those emotions. to leave them behind. but i know those feelings are present and are maybe festering. sometimes I need to scream just to release them. i don't want them to breed or eat me from the inside out.

calvin had surgery last week on his broken femur—one of my worst nightmares—to reattach his femoral head to its bone using three cannulated screws. it was a somewhat long operation. he doesn't yet want to put weight on that leg. it dangles from its socket as if a pipe on a wind chime, hovering above ground like it did when it was broken two weeks ago at school. i hope the surgeon got it right and that calvin will be walking on it soon. today is his fifteenth day spent in bed playing with his baby toys, listening to music, eating his meals, cuddling with michael and me. i worry he won't again be able to walk independently. the notion is scary. angst and bitterness pool. i wish i could shed some tears, but for now they remain steadfast in their reservoir.

i sit here on calvin's changing table listening to music. steely dan's do it again comes on, and i hear the lyrics:

then you love a little wild one and she brings you only sorrow.

the words make me think of me and calvin, and i just about break down.

but then i hear an unmistakable noise in calvin's bed, and i know he's had a huge gooey poop, and i spend the next half hour wiping it up—off his skin, off his pajamas, off his socks, off my sweatshirt cuff, while trying to ensure he doesn't put his hands in it and so it doesn't get on anything else. and i could almost cry from sheer exhaustion. but i don't. the anger, angst, and discontent have their grip on me and are holding my tears hostage, at least—i think—until i can begin to see my boy take a few steps. until i have a sense this clusterfuck (excuse my french) may one day be over.

when michael comes home, i duck outside to walk the dog. the sky is gray. the ground is wet. i feel fatigued in a way i haven't often felt. i drag the heels of my green rubber boots along the gritty sidewalk as if i'm very, very old.

suddenly, the sky opens up. the clouds begin to sprinkle. drops fall on my cheeks, and something in me releases—the floodgates—and i cry a good cry, a long cry. and i walk along the street not caring if anyone sees my miserable, knitted face, because—besides a good night's sleep—crying is just what i need.

wonder

my little wonder brings me up and brings me down. he makes me smile. he makes me frown. he's the sweetest kid in the world. he's cute and handsome, incredibly peculiar and so messed up. sometimes he's unbearable. always, he makes me think and feel deeply. i wonder what emotions he's capable of feeling.

i wish i could get inside his head. he's impossible to figure out. i wonder what he dreams, wishes, needs, wants. i wonder what, if anything, he worries about. does he know he's treasured, resented, loved? does he have those feelings about us?

what does he experience when a seizure is coming? pain? panic? fear? euphoria? this morning he had his third grand mal in just thirty-one hours. in our grogginess, we decided to give him the rectal valium to stop the cluster. so difficult to know what is best when it comes to these drugs. what's too little? what's too much? have the drugs actually caused this clusterfuck? what if we had never given them to him at the start? would he still be seizing after all these years? have the drugs ruined our son? these are things i so often wonder about.

today will be spent parked on the faded green couch. my boy is mostly out of it—listless, unsteady, feeble. he's silent, calm, needy. my neck is aching. he keeps craning his toward the sun. i sense he's not yet out of the woods. more seizures coming. i can feel it in my bones. no wonder i so often come undone.

perhaps today i'll get some rest. maybe read a little. write some. stay out of the heat. cuddle my son. try to move beyond the worries that keep me up at night—regret, failure, lost opportunity, despair, dread. i'll keep wondering what goes on inside my little boy's head.

rain on a rooftop

soothing is the sound of rain on a rooftop. like bluesy music, songbirds singing, and wind rushing through treetops, it's comforting to me. one of the best sounds in the world. it quenches anxious spells. softens crusty peaks of ice and snow. cleanses the atmosphere. helps me fall asleep amid the worry, fear and frustration of tending to my choking, seizing son.

i first heard the patter of droplets on the sill outside calvin's window as i laid next to him last night in the wake of his brain's electric storm. in the silent moments when his breathing faltered, i heard the swish of passing cars. i nudged him to inhale. i wondered if the spate had brought on the evening seizure. sometime later, the rain began drumming hard on our red metal roof. underneath the covers, i soaked it in—the sound and thought of the sky opening up and surrendering. it's what i sometimes long to do—surrender. or at least escape life's dark clouds like raindrops do. i thought about my childhood home near seattle where rain is reliable nine months running. i sometimes got the blues. that same rain is now renewing. i thought about my thirst for spring, for a thaw to reveal the last frigging blade of green. or a melt good enough to coax the crocuses into coming up at the sunny southwest corner of our home. for frozen, curled-up rhododendrons to unfurl. for buds to swell and open. for winter's long and somber world to explode into psychedelic blooms. to get outside with calvin and move.

by morning the storm had passed. on today's drive, i put the front seat windows down an inch or two. at forty-three degrees and sunny, it feels like april. back at home now, smellie is napping in a patch of sun. calvin is resting and recovering on the green couch, his face beneath his baby blanket the way he likes to do. i'm sitting atop a pile of clean clothes, some folded, others not, in a corner chair. the house is quiet. cars swoosh by through puddles. a warmish breeze teases limbs and leaves into awakening. this weekend, more rain is coming and, like last night's storms, it'll move me and move through.

worried sick

Yesterday morning at 4:30, after I'd been tossing and turning for over an hour, the dreaded seizure came. It had been just six days since the last one. In the early evening the night before I had seen its approach, Calvin's telltale agitation, his finger-knitting and eye-poking common harbingers. Sadly, there isn't much we can do but lie awake worried sick waiting for it to happen while fretting over all things big and small—the supreme court, neglected inboxes, this filthy house, the election, social justice.

Since Calvin was two, he has had thousands of seizures. During them, he has bitten his cheek till it bleeds. He has struggled to breathe and turned blue. He has fallen out of bed and gotten bruised. He has succumbed to all kinds of dizzying side effects from antiepileptic medications—headaches, nausea, dyskinesia, ataxia, agitation, confusion, panic, anorexia, malaise, withdrawal. At least four times this year Calvin has taken a fall, usually on days before a seizure as he cranes his neck to stare at the sun. Sometimes he topples straight backwards as if he were timber. At others, he tips and drops to the side like a stone. Despite the fact that we've got our hands on him, he somehow manages to slip out of our grasp. The few times that he has hit his head, he was thankfully on the lawn, which is somewhat forgiving. 

As I lay awake next to Calvin as he drifted back to sleep after the seizure, I thought about our litany of miseries—his hospitalizations, his injuries, his seizures, his close calls, the difficulties in caring for him. The only thing we don't have to worry about are his medical costs thanks to decent health insurance through Michael's job, plus supplementary state Medicaid just for Calvin.

The healthcare costs for a child like Calvin are astonishing and include bills for medications, examinations by his primary care provider, neurologist, endocrinologist, urologist, gastroenterologist, neuro-ophthalmologist, pulmonologist, orthopedic surgeon, and x-rays, sonograms, CT scans, MRIs, EEGs, sleep studies, splints, orthotics, glasses, eye surgeries, nuclear medicine tests, ambulance rides, emergency department visits, hospital admissions, intubations, IVs, blood work, insurance premiums, copays, deductibles, and in-home nursing when there's not a pandemic.

Back in 2008 near the start of the Great Recession, my husband's case for tenure at Bowdoin College was in doubt. We spent weeks worrying about what we'd do if he were released into the worst job market since the Depression in a field with scant opportunity. If Michael were ultimately denied tenure and unable to find a new job, we worried that healthcare insurance premiums and deductibles would be cost prohibitive, assuming we could even get insurance for Calvin considering his myriad preexisting conditions.

In the end, despite the uncertainties, Michael was awarded tenure. This meant we were not faced with the dire situation in which many Americans find themselves today having lost their jobs and, thus, their health insurance due to a recklessly managed and consequently rampant pandemic.

Over the years, I've read and heard stories from countless Americans who have gone bankrupt due to massive healthcare costs from everything from appendicitis to cancer. From its inception, the Affordable Care Act (ACA), aka Obamacare, which provides healthcare to over 20 million Americans and requires insurers to cover preexisting conditions, has been attacked by republicans. Prior to the ACA, insurance companies regularly denied health coverage to people like Calvin, or charged exorbitant premiums to do so. The Biden/Harris ticket aims to expand the ACA to include a Medicare option for anyone who wants it. In stark comparison, the current administration is actively fighting to destroy the ACA despite still not having a plan to replace it; the Supreme Court will hear oral arguments on the fate of the ACA one week after the November election.

Americans' healthcare—a necessity to life, liberty and the pursuit of happiness and essential for a safe, secure, healthy, and prosperous nation—hangs in the balance, leaving many of the most vulnerable Americans to lie awake at night worried sick and getting sicker. In the most prosperous nation in the world in which so many people like to claim that all lives matter, none of us should have to live that way.

Calvin in the hospital after a prolonged seizure, March 2006

listening

Above the tick-tock of two old clocks, the rattle of storm windows, and the knock of radiators, I swear I can hear gas hissing through copper lines to the furnace downstairs. Outside, crows caw and cars rumble past, the traffic having picked up some since cities and towns are slowly opening, even as bodies pile up. In less than three months, there's been a staggering eighty-seven thousand coronavirus deaths—and counting—in this nation. The collective mourning must be deafening. Is anybody listening?

Through the southern windows, sun fades the back of the green couch where Calvin sleeps in our laps on the days after grand mals. He pulls my head into his, wants them nested together. I gladly accept. It gives me time to rest. Smellie pads over and plops her head on my leg where there's a free hand that can pet her. This will be how we will spend much of our day together.

If I were to sit up from here, I could nearly spy the gray fox if it were crossing our backyard. She's a wild-looking thing, low to the ground, grizzled and lean, a straight line going from snout to tail when she's hunkered down on the hunt. Once, I heard her screech like a woman or child being tortured. It gave me shivers. Though small—about the weight of a cat—if backed into a corner she might give our dog a run for her money. Luckily, Smellie's got seventy-five pounds going for her—the same as Calvin. Nature is crazy.

Peeking out the side window, I watch our neighbor's fifteen-month-old daughter who's already doing cartwheels around Calvin—walking down the sidewalk without holding her mother's hand, picking dandelions, tossing balls, waving at strangers. Recently, I wrote to someone about Calvin, telling them he's as much like a baby or toddler as a teen. Some things never change.

I'm almost drifting off when Calvin comes to. Such is the story of my life in this house. Rarely do I get more than a few minutes or hours of uninterrupted sleep or solitude, especially now. Never enough time to dream satisfyingly except when I'm walking in the woods with Smellie, hearing the woodpeckers drum, the songbirds warble, and the wind rush through the trees like a collective voice telling my mind to hush and not to worry—it's listening.

The end of the day finally arrives. In a cool shadow, I hear a bumble bee bounce off a window. They're huge this year for whatever reason. Earlier, I was able to dig three holes in the back corner of our yard and plant some arborvitaes. They look happy, as if the've been there forever, like trees yearn to be. As the sun sinks, there's almost no traffic. I notice again the clocks ticking and that same buzz or ring or hiss, though the furnace isn't running. I think it must be so quiet that what I'm hearing is just myself listening.

Photo by Michael Kolster

seizures and dreams

Last night in the wake of my son's seizure, while spooning him, I dream.

I'm in a small room in a strange, sparsely furnished house with a dozen others, none of whom I know. It's just after twilight, an indigo sky crowning a nearby mountaintop. Suddenly, the lights go out. Somewhere, whether in my head or from some eerie broadcast, a man's voice booms that everything is going to come down. It's clear the others hear the ominous message too; I see them scrambling about nervously. Then comes a low rumbling, one which I feel deep in my bones. Is it an avalanche? An earthquake? An explosion? Peering out a nearby window I notice that all of the homes nestled closely together into the mountainside are darkened too. I sit and fret, wondering if a tree will crash through the roof and crush me. I imagine the ceiling caving in, the earth swallowing us whole. I'm held captive awaiting my demise, only to wake to the sound of my son rustling under his covers. It's not yet dawn, and I hear the lonely rumble of passing snowplows, feel the house quake as the plows clear fresh snow from streets which are yet desolate.

With the exception of the unexpected seizure, all is well. Compared with years past, Calvin sleeps well after his grand mals and does not go on to have subsequent ones. No longer does he stay up for hours wired as if in a panic, his heart pounding, his fingers madly knitting. My guess is he is nearing full freedom from some of the effects of benzodiazepines and their withdrawal. Perhaps he is also benefiting from a much lower dose of Keppra than ever before. Maybe my latest batch of THCA cannabis oil is responsible for his recent, relatively low seizure count—only four grand mals this month and zero focal seizures so far—which is less than half his average monthly total.

As I drift back to sleep with surprisingly little worry about my boy, outside, tiny white flakes fall in windless conditions. Though the sun is far from rising, the sky is grey-white. The sleeping world is dark and still and quiet, save the rumbling of passing snowplows.

caution to the wind

Despite trepidation, Michael and I made a rare one-night escape upstate with Calvin and Smellie. It had been over seven years since we'd made such a trip, heading north into the lesser-traveled parts of Maine. Though we used to explore a lot when we first moved here, we've done so only a few times since Calvin was born, mostly because of his seizures. Now that he is older and bigger, another concern is finding a safe place for him to sleep without fear of him getting hurt.

The height of leaf-peeping season, the colors in the hills were as dramatic as I think I've ever seen. Photo ops were afforded in every direction. Amid the vivid autumnal colors, placid Mooselookmeguntic Lake shined like molten silver.

Three hours after our departure, we settled into Idle Hour, a rustic lakeside cottage a stone's throw from the Bald Mountain Camps restaurant lounge where we were able to get glasses of bourbon on the rocks, take-away. A young woman seated at the bar surprisingly paid for our drinks, telling me that it was her day's random act of kindness. I'm not sure she realized how much her gesture meant to me.

Back at the cottage, while seated for minutes at a time on a futon and in Michael's lap, or in his johnny-jump-up which Michael rigged to a railing, Calvin passed the time contentedly as a fire in the wood stove crackled and popped. As usual, Smellie didn't venture far, even with the lure of the lake nearly at our feet.

At twilight, we eventually managed to settle Calvin into the middle of a squeaky queen-sized bed, propping a half-dozen heavy pillows around him. Michael began making his magic in the bare-bones kitchen, producing a perfectly cooked herb-encrusted rack of lamb, mashed potatoes sprinkled with some black trumpet mushrooms our friends had home-foraged, plus sautéed skinny asparagus. Thanks to the mild weather, we were able to dine on the porch with the door open, jumping up to check on Calvin every so often. After we finished our meal, an affable bloke from the cabin next door brought us several delicious barbecued scallops wrapped in apple-smoked bacon for dessert. He had visited us earlier and had asked about Calvin, his diagnosis and prognosis. Years ago we might have been incensed at such questions. These days we appreciate any genuine interest in our peculiar boy, even from strangers, particularly considering so many people gawk at or ignore Calvin, and some of my five siblings rarely ask how he is doing.

Before retiring to bed, I took Smellie for a short walk and noted the full moon rising in the mist over our heads. I wondered if Calvin's intermittent shrieking during the drive up had been due to the moon's gravity, wondered, too, if it were an omen. The grand mal at five o'clock the next morning—only four days since the last one—validated my concern. But regardless of Calvin's seizure, which was typical and self-limiting, requiring no emergency care, our adventure proved to us we should throw caution to the wind more often.

click on any photo to enlarge.

regarding calvin

As my boy sleeps in my lap, in his bed, in our bed, on the couch, I hear the birds chirping outside. I feel the rumble of passing motorcycles and cars, see students strolling down the sidewalk. A week of school has come and gone, yet my boy remains sick at home. In my arms, we rest and pass the hours.

Yesterday, while on the couch together, Calvin looked right at me. This gift is rarely granted, and I found myself luxuriating in his pool-blue and yellow-flecked eyes. I did not take his gaze for granted; it's so rare that I see him look at me—almost never, it seems. But sometimes, when I put my face smack-dab in front of his, he does regard me. As a baby, if memory serves, he used to do it more often. I remember the day he got his glasses when he was a tiny eleven-month-old. It was like I could see the world flooding into his eyes—eyes which before had likely seen only shapes and colors.

Now, for whatever reason (autism, visual fields, seizures, drug side effects) Calvin usually disregards or looks at me peripherally. His eyes jerk and rove from his nystagmus. One eye often turns in, a phenomenon that, vexingly, his former ophthalmologist regularly denied, explaining it away as an optical illusion. No matter how confident I was of my son's eye-drifting or tugging-in (I'm the resident expert in observing Calvin closely) the doctor still rebuffed me.

Tomorrow, hopefully, Calvin will attend his first day of high school. He'll be greeted, fed, diapered, and escorted by a teacher and a staff who have rarely, if ever, worked closely with him. My anxiety is high, afraid he'll choke on food he doesn't chew well, fearful he'll fall off balance on the stairs or run into a door jam like he did this morning. Michael and I understand that Calvin, due to his poor vision (which glasses don't fully correct), his lack of coordination, and caregiver overconfidence or undervigilance, is a walking disaster, an accident waiting to happen. My hope is that the folks at school will regard him closely, will see what he sees and what he doesn't.

Calvin's first day with glasses when he was eleven months old.

love hurts

In the sunlight, Calvin's hair is the color of redwood in rain. His skin is creamy and supple. A little crescent-shaped dimple appears at the corner of his mouth when he smiles and giggles. Gracing his cheeks, neck and arms is a sparse constellation of little dark specks, a half-dozen of them tossed as if seeds in a breeze. A larger freckle, the first of them to appear when he was little, adorns his left shoulder blade.

Our son is pure and sweet and vulnerable. His body, though awkwardly gangly, remains flawless. But his brain is messed-up, missing a significant amount of its white matter, so much that at fifteen he can't tell us of his miseries which, because of epilepsy and its treatments, are plenty. These are all reasons why it pains me so much when he gets hurt.

The other day Calvin fell while in the bathtub. From downstairs I heard the colossal splash, as if someone were doing a cannonball into a pool. In the past, I'd seen him kneel at the edge of the tub and try to stand, so I knew what had likely happened, but how? The nurse on duty had left the bathroom, however briefly I don't know—something I had allowed the nurses to quickly do to put his dirty clothing in his room down the hall and to grab his towel. While she was gone, Calvin must have tried to get out of the tub and then fell in the absence of someone there to help. By the time I got to the top of the stairs where the bathroom is, he began whimpering; that moment of silence between hurt and tears is so dreadfully gut-wrenching. The nurse and I had no idea what part of his body had been injured. The circular purplish bruises on his bony upper and lower hip did not show themselves to me until the next day's bath, when Calvin removed the rubber stopper and put the whole thing into his mouth.

As I write this I am keenly aware of the frown on my face—my furrowed brow, narrowed eyes and protruding bottom lip. I'm wincing with palpable heartache at my son's fragility and pain even now, days after the accident. I want to be there always to protect him. To break his fall. To prevent him from choking. To stop his seizureish fits. And though it's not humanly possible, I'll try with supermama vigilance nonetheless.

alive and loved

It had been years since I dined with the neighbor-mother of a boy whose due date was within a week or so of Calvin's. However, Calvin, now fifteen, came into the world six weeks early, and from then on the trajectory of our sons' lives would forever be diametrically opposed.

Kathy and I sat in a corner table near the bar sipping beet yuzu martinis and wielding chopsticks to munch a shaved-cabbage, pea shoot, crispy-shallot, and roasted-peanut Asian slaw. My friend ordered pan-fried vegetarian dumplings. I got the ones with pork. We caught up a bit on our and our husbands' recent endeavors and shared worries about our children. We laughed and chatted with a friend seated next to us whose daughter, also fifteen, is in the wonderful thralls of what it means to be a teenager, just like my dinner-date's son.

I find myself hungry for stories of other people's kids even though they often trigger a bittersweet sting. My love for kids—their silliness and wit, their quirkiness and crazy antics, their world curiosity, fearlessness and old-soulness—is largely unquenched because mine is nonverbal and incapable of learning and doing so many of the most basic things. My child is just becoming proficient at riding a trike on smooth, indoor floors, while his peers are playing soccer and lacrosse outdoors. My child is still being spoon-fed diced, minced and pureed foods, while his peers can make their own snack foods. My child is relating mostly with adults—teachers, ed techs, nurses, while his peers are hanging out together and are beginning to show interest in having sweethearts. My child is still playing with chew toys, while his peers are likely already beginning to think about college.

Kristi, the woman seated next to us who I don't know very well, told me that she reads every one of my blog posts. She (needlessly) apologized for having not responded to any of them in written form. She wanted me to know how important she thinks my blog is for others. She went on to say that she even shares it with her children, encouraging them to think outside of themselves and into of the lives of others. I was most humbled by, and grateful for, her affectionate show of appreciation for what has become for me such a labor of love.

While Kathy and I drank and dined, a handful of Bowdoin College English professors filed in slowly and were seated at a nearby table. Three of them—Ann, Marilyn and Aaron—who are dear to me and whom I don't see nearly often enough, came over to visit briefly and to give me big hugs. Throughout my years of living in Maine, they've all been a source of strength, love and damn good humor.

When our drinks were empty and our bellies were full, we got the bill and Kathy kindly paid for our meal. Upon leaving, I gave each of my friends one more hug. As we left the cozy indoors, we were greeted by a cool and invigorating April breeze. I remembered what I'd said to Kristi before we were served our meal: March, which was so full of seizures, had been hellish for Calvin and me. But last night, having begun a new spring month, I left the restaurant feeling new and alive, loved and buttressed by so many kind, compassionate, generous, and wicked-smart people, many of whom are still kids at heart. No wonder I like them so much.

Asian slaw

nature nurture

After three weeks of seeing my son endure all but a handful of days with seizures, I stepped into nature. I find being alone in the forest, seeing and smelling the sea helps soften the edges of any angst I feel. Yesterday, I hiked an hour along a wooded path blanketed in needles and skirted by green ocean inlets where patches of sun filtered through the white-pine canopy. Upon emerging into a sloping, golden field, I got in my car and drove a few miles further south to the end of Harpswell Neck where the Giant Stairs have views to open ocean. Above me, the sky shown vast, blue and swept with clouds. Though we are still two months away from full foliage in this region, the skeletons of shrubs displayed their naked beauty.

My time spent outside on what was the first truly mild March day in Maine proved vitally restorative, because Calvin suffered his fifth grand mal of the month last night, only three days after a previous one. I think that the nature nurture I'd gotten earlier helped to cushion the blow of hearing my boy scream, seeing him stiffen and convulse, vomit and bleed, then whimper as softly and sadly as the lonely sound of wind creaking the trees.

fallout

The night my water broke, an ice storm blew through Maine. Ice caked windows and froze shut doors. It sheathed leaves and needles and burdened branches. It glazed streets and sidewalks, treacherously.

I was only thirty-four weeks along in my pregnancy. A fortnight earlier, a bombshell had been dropped by a doctor who had shocked us with the news that my fetus had a brain malformation. Specialists in Boston, worried that a vaginal birth would stress our unborn child further, had arranged for a scheduled C-section to be performed at week thirty-five. Though I didn't feel any contractions, I quickly grabbed a few essentials and donned my down parka, zipping it up tightly over my basketball-sized belly. Michael kicked open the mudroom door which was encased in frozen rain, and we made our way, driving on desolate roads to our local hospital wondering how, in my condition, we'd get to Boston.

When the on-call obstetrician arrived at the hospital, we explained our predicament—our fetus' enlarged ventricles, his possible brain bleeds, the scheduled 35-week cesarean in Boston aside a team of pediatric neurologists and neurosurgeons, plus donor platelets readied if our newborn needed them. Unable to accommodate our serious case, she made arrangements for me to be transferred by ambulance to Maine Medical center in Portland. The ice storm had made it impossible for us to get to Boston; Medivac helicopters had been grounded.

Once at Maine Med, we explained our situation to another doctor, and a game plan was made. Without blood bank donor platelets in the case our fetus—who we had already named Calvin—suffered another brain bleed, I'd have to undergo a pheresis. In other words, I would be the platelet donor for my son if need be. Actively contracting, albeit subtly, I had to sit upright and motionless on a hospital bed for nearly an hour while my blood was syphoned, put through a centrifuge to extract its platelets, then pumped back into me. The pheresis left me with too few clotting platelets to safely undergo an anesthetic epidural without risking a spinal column bleed. Instead, I had to go under general anesthesia to endure the cesarean. As a result, despite my pleading, the obstetrician would not allow Michael in the operating room, which meant neither of us could witness the birth of our fragile son.

Sorrow and worry wrenched my heart. Everything Michael and I had hoped for, wished for and expected of our child's birth had vanished in a blink. Michael wouldn't hold my hand and offer reassuring words. We wouldn't hear our baby's first cries, wouldn't marvel at the sight of our beloved newborn. I would not clutch my babe to my breast, nor would Michael kiss my forehead as I looked into the loving eyes of a new father.

Instead, my body would become void of all senses. Neither of us would be participant, witness nor advocate. No photos, no videos, no memories would exist of the moment our son was born. I'd be left instead with the memory of kissing Michael goodbye and holding his hand as long as I could until we were finally broken apart. Of seeing him standing alone in an antiseptic room as a white-clad mob wheeled me under a tunnel of lights. Of the fear that I might never emerge from the anesthesia to see Michael's face again. Of perhaps never seeing my wee child alive and breathing.

Photo by Michael Kolster

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.

bombshell

Fifteen years ago, I reclined in the same green couch I'm sitting in now, resting and reflecting as I watched the world go by outside a southern window. I was no longer allowed to walk the dog or swim a mile or grocery shop. I wasn't allowed to go outside. Michael and I had stopped attending our hypnobirthing classes, stopped practicing our script, and I had stopped showing up for my prenatal yoga classes. I and the baby in my belly, who rarely and barely moved, and who still had six to eight weeks to develop, simply had to sit and wait it out.

Days earlier, a doctor had dropped a bomb on us. A thirty-two-week sonogram had revealed an anomaly in our fetus' brain: enlarged lateral ventricles, aka ventriculomegaly. I'll never forget the doctor's words to us:

"This is something you need to worry about." 

The discovery had led us to Boston where within one twenty-four-hour visit I underwent numerous additional sonograms, a CAT-scan, several blood tests, one fetal MRI, and a five-hour IVIG, otherwise known as intravenous immunoglobulin. All of this was because of an opinion held by bunch of pediatric neurologists, radiologists and neonatologists who thought they had found evidence of intraventricular and subdural brain bleeds leading to a blocked fistula. This blockage, they hypothesized, caused a backup of cerebral spinal fluid and the ballooning of our baby's lateral ventricles which in turn damaged the surrounding white matter. Their causal theory for the bleeds, based on a false-positive blood test result, was that there was a platelet incompatibility between me and Michael triggering my antibodies to attack my fetus' platelets. The consensus was a scheduled, thirty-five-week cesarean at Boston's Children's Hospital meant to avoid further trauma and injury which a vaginal birth might cause.

After the bombshell, I remember being exhausted, anxious and afraid. I don't remember being brave. I imagine Michael felt the same. So we sat tight in the frigid winter weather, wondering if our baby would be okay, wondering if he'd ever crawl or walk or talk or, as one neurologist told us was possible, might be completely normal. I remember wondering, after such an uneventful and healthy pregnancy, why it turned out this way.

I still wonder to this day.

February 3, 2004

poor little messed-up child

Minutes ago, Calvin had his third grand mal seizure within sixteen hours. It was the first daytime grand mal in months, if not far longer. He had one just after falling asleep last night and then woke to another at four-thirty a.m. He's been crying all morning, his source of misery assumed though unknown. The only thing I feel okay about is that this third seizure occurred while he was napping rather than while he was awake, something the THCA cannabis oil seems to have prevented for years. It would seem he is getting sick again, having just recovered from a nasty cold that is going around.

He is in bed right now. I write this while sitting on top of his changing table with the shade drawn, listening to Baby Mozart, and wonder if he is going through a growth spurt and has outgrown his Keppra dose. I wonder if he needs extra THCA at night. I wonder if now is the time to try the CBDA cannabis oil that was made with him in mind. I wonder if he is still suffering from benzodiazepine withdrawal.

I'm grateful that Calvin's partial complex seizures have virtually disappeared these past couple of months, but it seems as though some of them have been replaced with grand mals; Calvin has had six or seven grand mal seizures in each of the past two months or so. Most folks will tell you that a single seizure is one too many.

For several years I've dreaded Calvin turning fourteen; I know too many parents who have lost children with epilepsy around that age—parents of Kevin, Matthew, Tyler, Kellie, Cyndimae. I wonder if Calvin might be the next to expire, the result of pneumonia, a prolonged seizure or perhaps SUDEP: Sudden Unexplained Death in Epilepsy.

For now, though, I'll hold Calvin's face in my hands, his body in my arms. I'll sop him up since we can never know what tomorrow might bring. I'll hold my breath and hope he doesn't have any more seizures for awhile. But I remain afraid, watchful, exhausted, despondent. My sweet impish boy. My poor little messed-up child.

piece of cake and other idioms

This morning, I narrowly escaped a bruised or broken nose, a black eye and a fat lip. After Calvin's second grand mal in less than twelve hours he began acting as if he were going to launch into one of his frightening night terror episodes. These events are difficult to diagnose; I don't know if they are migraines or withdrawals or panic attacks or hallucinations or some kind of seizure. Perhaps they are a combination of all of the above. Thankfully, the acetaminophen suppository seemed to help, but not before he roughed me up and head butted me several times.

Last night was the second time this month Calvin suffered a grand mal only an hour after his bedtime meds and after falling asleep—a rare time for him to have a fit, though not unheard of—and the second time he had seizures on consecutive days totaling five grand mals already this month. I'm cautiously optimistic, however, about what it might mean that we have not seen any partial complex seizures in over four weeks. If we can virtually eliminate these, Calvin will, in any given month, have less than half the number of his average of monthly seizures. Still, the grand mals possess him, and I feel we are running out of viable, reasonable options for their suppression.

Often, I tell folks that if it weren't for Calvin's epilepsy—the dread, the scores of seizures, their side effects and dangers, the drugs he has to take which I have to order, dispense and give, their side effects, the cannabis oil I make, dose and administer, the sleepless nights due to seizures and drug side effects, the cumulative toll from stress—taking care of him would be a piece of cake. Seriously, without epilepsy, Calvin's non-verbal, incontinent, legally blind, uncoordinated fourteen-year-old self would be, in comparison, incredibly easy for me, a veritable walk in the park. Without epilepsy and its drug treatments, Calvin would likely walk better and be worlds ahead developmentally. Hell, he might even be uttering words and stringing some of them together. He'd likely sleep far better and not suffer bouts of mania, withdrawal, panic or the night terror thingies. I wager his bowels would work without having to "supp" him every day. Maybe he'd even be potty trained. A kid like that I could no doubt take care of blindfolded with one hand tied behind my back. No joke. If that kind of kid—the one I just described—sounds like a lot to handle, then perhaps you get some sense of how debilitating, limiting, harrowing, stressful and exhausting epilepsy can be for a child and their family.

So, today, while it is gorgeous and mild outside, I am walking around the house like a zombie. I am not on a cake walk. Right now Calvin is in his bed with a case of the hiccups. He's got a low-grade fever, doesn't want to eat or drink, is quite agitated and has several other harbingers of another seizure on the horizon. In other words, I am not convinced he is out of the woods yet. But still no sign of the partial seizures which usually appear in the wake of grand mals. That is good.

What is also good is that I don't have a black eye, a fat lip or broken nose ... yet. But I wish today with all my might that Calvin and I were taking a walk in the park.

Photo by Michael Kolster

whimpering

Ten p.m. Outside temps dip well below freezing, ice fractals crackle on the tops of blackish pools. The wind whips windows and tousles brittle limbs. Gray foxes, following footstep ghosts, trace a crusty sludge path in the snow around the house. Inside upstairs, Lincoln in the Bardo has been closed and set upon a dresser. Lights have been switched off. Three heads are weary and resting on ticking-striped pillows stuffed with goose down, plumped and rumpled into shapes made for dreaming.

Readily, sleep sets in.

In the room next door our boy cries out. Not a cry as much a spell of sickening retches as the seizure takes hold. Limbs stiffen. Breath snuffed out. Lightening-quick flickers of eyelids and gaping mouth, trembling limbs. Cheeks flush, lips tinge blue, fingers and lids pale and gray. Oxygen proves elusive. Consciousness gone. Guts twist and knot. Linens tint with bloody drool. Frankincense in drops on soles and toes.

Two to three minutes of this. Longer than most.

In its wake, every exhale is a whimper. Never heard this before. Misery in his mewling feels eternal. Lasts nearly half an hour. I ponder its root.

Bitten tongue? Jammed finger? Broken toe? Piercing ache or cramp? Frightened, muddled boy?

He puts his arms around my neck. Pulls me close. Knees up to his chest, still whimpering like a pup. I ask him in a whisper what is wrong. I murmur I am sorry. I stroke his face, rest my hand upon his hip. In the dim light, I can see him drifting off. Eyes closed, I heed his every breath.

            

end of november

When I fetched Calvin from the bus yesterday, he had a smile on his face with his tongue stuck out into the frigid wind, a cute look that has emerged in the past several months. I bent down to kiss him and I smelled what I call seizure breath, a telltale sign of a looming grand mal. I sniffed again just to be sure I wasn't imagining things; he had had a grand mal the morning before, so he wasn't really "due" for another one until sometime later in the week at least.

As the afternoon wore on, the low sun casting its long shadows, I noticed other omens: bouts of shrieking, flushed cheeks, fingers in his mouth, eye poking, irritable and whiny before bed. As a result, just before midnight I woke up to give him a dose of THCA tincture for good measure, but it wasn't enough to thwart the grand mal that came at 4:20 a.m.

My boy is still not back to baseline, so I am keeping him home from school again, at least for the morning.

November, which started out pretty badly with a rash of grand mals and partial complex seizures within the first twelve days, calmed down after we halved Calvin's CBD oil on the thirteenth; he hasn't had any partial complex seizures since then and, until last Sunday, he'd had only one additional grand mal. However, including that one plus the one this morning, he has had a total of six this month, and a count of nine in just thirty-four days—twice his monthly average of grand mals. The end of November can't come soon enough.

Nonetheless, I am trying to remain positive, though I am anxious and watchful this morning, hoping he won't have any partial seizures which have a habit of occurring in the wake of his grand mals. If we could eliminate his partial seizures he wouldn't miss so much school, a place where he learns and, on good days, seems to thrive. I'm also reminding myself that, though he had a fraction of the seizures before starting the benzodiazepine wean over three-and-a-half years ago, he was an impossible child, reducing me to tears on most days due to his disconsolate mornings, incessant shrieking, extreme hyperactivity and chronic insomnia, which lead Michael and I to agree that we'd exchange his poor behavior for a few more seizures, hoping to improve our family's quality of life. To a great extent we were right, though the hardship now is the number of days Calvin has had to stay home from school.

As with every year, the advent of winter-like weather—bone-chilling winds, shrunken shrubs, short, cold days, naked trees—causes me to pine for the spring, this time more than ever. By the first of March Calvin will have taken his last dose of clobazam, the benzodiazepine he's been on for years and one we've been painstakingly weaning from a daily high of thirty-five milligrams to just over half of one. My hope is that once the benzo clears his system, Calvin will have fewer seizures simply because he will no longer be in active withdrawal. We will see. If not, I'll be on the hunt for some other remedy, November a distant memory.

Photo by Michael Kolster

alone with my thoughts

Sometimes, when I am alone with my thoughts, I find myself wondering which would be worse—if Calvin were to die, or if I had to spend the rest of my life caring for him. I never reach any conclusions.

Yesterday was one of those days. I was stuck inside again with my seizing child who never got back to baseline after the first three seizures, and seemed on the verge of having a fourth all day long. For hours, I watched him fidget endlessly, as if he had ants in his pants and itchy fingers. I followed him around the house as he rambled aimlessly, banging tables and doors, drooling on windows and sills, biting book cases and chairs. I changed countless diapers, soiled bibs, kerchiefs and clothes. These behaviors are not altogether uncommon, but that he didn't engage with me, seemed unaware of my presence most of the time, was less usual. He was camped out, whether consciously or not, in his own post-ictal, drugged-up world. Aside from keeping him safe, I may as well have been alone. Just watching him, I could feel my shoulders cinch up into knots waiting for the next seizure to hit. My brow puckered from tension, tedium, frustration, fatigue and sorrow, my spirit ached from too many hours of little to occupy my thoughts but the myriad of missed opportunities, and the senseless waste of lives meant to thrive and grow.

In-between diaper changes and feedings, I saw a photograph of a dear friend's small child. In it, the boy is standing on a beach, his supple arms and legs exposed, his pudgy little feet and fingers dipped in sand. Calvin should have been like that boy, I thought to myself with a lump in my throat. Healthy. Steady. Able. Aware. Full of potential.

Last night I sat alone eating dinner while watching an account of Rohingya Muslims fleeing Myanmar. In it, Rohingya women wiped tears from their faces while recounting the raping, butchering, burning and burying alive of their husbands, mothers, children, sisters and brothers before their eyes, all part of their nation's ethnic cleansing. Cleansing. Who coined such an antiseptic term for such gruesome crimes against humanity, for genocide? I cried with the mothers, lamenting my own loss which pales in comparison to what most in the greater world face. I thought about how, if only for my own suffering child, I might board a plane to go aid refugees. If only for that simple fact—though I love to hold my precious, feel his breathing and heartbeat, kiss his supple cheeks, stroke his head—I could get the hell out of this life which at times, like yesterday, feels like such a waste.

 EPA/STRINGER