one night away

It was just one night away. Up the coast a bit. Out to an island linked to the mainland by a tiny bridge. Side by side, the house and cottage sprouted up from a granite shelf. Below us, the gaping mouth of the tidal river raged and swelled. It was as if we were on the banks of the ocean itself. The waves breaking on the rugged shore. The surf's rhythmic hushing, as if earth's lungs letting breaths out, could've rocked me to sleep standing up.

We were guests of beloveds who have a son a lot like ours. Before gathering, we each did a Covid rapid test; all of them came back negative. It was a year ago October when we had last vacationed together in adjacent lakeside cabins. Back then, because of the damn pandemic, we had worn masks and dined with wide-open doors and windows despite the frigid night. We sat on the porch and watched leaden clouds roll across the lake and release their burden upon us. We spotted jagged lightning bolts. Heard the sky split and crack and snarl above us. Listened to the rain pelt the cabin roofs. That night, Calvin seized.

Last Saturday, the weather felt reminiscent. A break in the rain let me escape to a nearby beach revealed by receding waters. I sunk my sneakers into piles of shells and pebbles, jumped and slipped like a kid from rock to kelp, luxuriating in my ten minutes of freedom. Smellie surveyed and sniffed her new surroundings. When it began to sprinkle, I bounded up the steep path and made it to the cottage just as the sky opened up surrendering its liquid treasure.

Soon after, Calvin got his evening meds. We laid him on the bottom bunk, shoved a couch against it and padded its wooden back with cushions so he wouldn't fall out and hurt himself. I was reminded of the indoor forts I made as a kid—for fun. It took him awhile to settle in the strange and darkened space. I wondered what he made of it.

Thankfully, the baby monitor's range was good enough to reach the main house, which meant the four of us could dine together. Michael went to check on our restless child twice. Laid him back down. Covered him back up. Finally, Calvin quieted. The table set, we devoured mouthfuls of roasted potatoes, fat lamb burgers and salad, raised and clinked our glasses of beer and red wine in tumblers. We celebrated anniversaries, mini vacations and simply being together. Just as we were contemplating dessert, I heard Calvin shriek and shudder. 

"It's the fucking seizure!" I said, as I flew from the table, darted out the back door and down the stone path to the cottage. It took a minute to reach my boy, having had to tug the couch away from the bed. When I did, his poor feet were kicking the paneling. As the spasms slackened, he had great trouble catching his breath. His soft tissue and or fluids fitfully blocked his airway. I did my best to keep him on his side so he wouldn't aspirate. His mouth had bled again. As always, it was upsetting.

It took the two of us. Michael and I clumsily lugged our toneless son to our big bed. We tucked a quilted bed pad under him. Shifted his body until he was centered with his head on the pillow. I crawled in next to him. With my hand on his heart, I fell asleep looking at a panorama including nearby silhouettes of four large evergreens. A shroud of mist had wrapped itself around their blackness. It was as if they were sentries watching over us. Soon after came the deluge. It lasted through the night, shifting in intensity. It was powerful, deafening, cleansing. Its magnitude dwarfed my son's fit and reminded me of nature's awesome indifference, its absence of judgement or discrimination. In that way it was comforting, helped me feel somehow grounded and hopeful, even amid the sorrow I felt for me and my kid.

absences

As I walk the dog at the fields in late afternoon the sun descends, casting its long, early-autumn shadows. Bathed in the golden light, I get a mix of feelings both sublime and glum. I'm reminded of my splendid childhood summers, but also of times my mother rang the dinner bell calling me away from playing with my friends. I knew the fun part of my day had come to an end. It didn't matter that I'd wake up to another one. I didn't think of it. Just hung my head mourning the absence of my friends. Dragged my feet over the gravely road, heading home alone.

Leaving the fields, a boy jogs across my path. He must be twelve or thirteen. He's a little taller than Calvin and nearly as thin. That's where their commonalities stop. The boy is on his own. He is nimble. He can run. He's a fast athlete and, even at that age, serious and focused on his endeavor. Seeing him gives me pause, and I find myself thinking again about Calvin and our sorry situation with him—what if things hadn't gone so wrong?

I watch the boy run down the path and disappear around the bend. In the distance, a bunch of college students plays soccer, their fit bodies able to do exactly what their brains tell them to do. Their laughter is bittersweet to my ears. Hearing it makes my heart soar and sink, my eyes sting and blink, my mouth tighten into a smile then slacken into something more somber.

My precious boy doesn't have a single friend. He has no concept of play or sport, camaraderie or competition. He can't do those things. Doesn't have language. Navigates his world as if he were blind. Isn't very adept at walking. Has poor coordination. Virtually zero fine-motor skills. He's at the mercy of a brain anomaly, unforgiving seizures and drug side effects. I quietly lament: there's so little joy in life for him.

As I stroll home, the sun at my back and the afterimage of the running boy blazing in my brain, I feel lonesome. The wide street that runs in front of my house is desolate. There are no neighbors tending their gardens. No cars or skaters or bikers sailing by. No parents pushing strollers. No flocks of happy students crossing the road. Loneliness is not an emotion I feel often; I like my own company, like being alone. What I feel is the distinct absence of a child beside me. The loss is palpable. I sense the emptiness in it—the absence of conversation, of exchanging ideas, sharing hopes, hearing dreams, of feeling the sheer joy of walking, running, talking, biking alongside one's child. The hollow pit in my gut deepens as if weighted by a stone. The grief and loss constantly and for years gnawing at it. Thankfully, the burden has softened over time, not to the point of being in any way comfortable or easy, just slightly less dark, sharp and heavy. Less likely to literally bring me to my knees.

I've been rereading my blog posts from nine years ago. Back then, Calvin went seventy-eight days without any seizures. Regrettably, his behavior was unbearable—relentless and terrible side effects from taking high doses of three powerful anticonvulsant drugs. It wasn't a fair or sensible trade-off, so we began weaning the drugs one by one. It took us a number of painful years to get him from three down to one. Since then, however, nothing we've tried—five different kinds and repeated tries of CBD cannabis oil, Epidiolex, probiotics, increasing his Keppra, reducing his Keppra—has helped him regain any kind of seizure freedom longer than a few weeks. Lately, he goes mere days between seizures. I'm still fiddling with his dose of homemade THCA cannabis oil hoping to find a sweet spot.

I think about the boy athlete again, the young runner so sure, quick and lithe. I like to believe Calvin would be like him if things hadn't gone so wrong. And, so, I'm mourning the absence of a healthy, able child. But last night, when Calvin wasn't doing so well, I crawled into bed next to him. He reached for me, wrapped his skinny arms around my neck, curled his knees up to his little bird chest and pulled my head to his. With his eyes closed, he relished my kisses on his eyes, nose, cheeks and chin. Then, like he does sometimes, he made the sweet and soft hum I love so much—uh-uh. In my mind, it sounds a bit like Mama, which long ago he said just once. And for a fleeting moment, that empty sense of absence was filled right up.

Photo by Michael Kolster

strange, rare, amazing gazes

strange gazes. bad appetite. sour breath. restlessness. intensity. wanting to drop. choking on food. hot skin. agitation. euphoric mood. these are harbingers of calvin's seizures.

too soon. only five days since he suffered the last fit. still, i saw it coming. i gave him extra cannabis oil hoping to prevent it. maybe i waited too long; it failed to do the trick.

i kissed my restless kid. laid him back down in his bed. a rare and sadly suspicious smile crept across his face. minutes later, we heard his telltale shriek. i thought we had dodged it. i was wrong. he seized and choked. something inside his mouth bled. afterward, he had trouble catching his breath. it's always unsettling. something we dread. never gets any better.

i quickly brushed my teeth and undressed. crawled into his bed. with my palm against his chest, his heart felt as if it would burst right through his ribs. it remained pumping wildly for quite some time. caused me to fret. made me think we should start him on a new med.

finally, my little calvin drifted off to sleep. dim light seeped in from the next room. i peered over his shoulder to a portrait of him propped against the wall above his dresser. it was made when he was five or six. often, when i lay in bed with calvin in the wake of his morning seizures, i see it in the shadows, its cool blues, pinks and reds. it was done from a photo. gifted to us by a painter friend. it's masterful. full of life and color, vivaciousness. in it, my boy's eyes are bright. his smile is big and broad. his gaze, unusually fixed. he's looking right at me. it's clear he sees me. these are rare and amazing gazes. on the days when i don't see my son smile—which is most, lately—at least i can always rest my eyes on it.

over the years, calvin has lost his sense of cool. of calm. of happiness. we see glimpses, like when we tickle or kiss him. but those moments are far between and fleeting. i wonder what the drugs and seizures did to him and are doing. wonder if he is in constant discomfort or pain. wonder how his hormones factor into the equation. wonder how we can recapture his happiness again.

alone on the roads

Since Calvin returned to school early this month, I haven't been taking him on our daily, damn-pandemic drives on nearby back roads. I seriously mourn their absence; they were a great escape from these four walls, a kind of unwinding, and a chance to see the familiar smiling faces of a few strangers who have, in various ways, become friends. But a recent spate of spectacular weather inspired me to take a couple of rides by myself, one on my bike and another in the car.

I visited my usual haunts—Simpson's Point, Rossmore Road, Bunganuc, Wolfe's Neck Farm. The scenery didn't disappoint. It never does. And there were hardly any cars to distract me from my surroundings. I was quickly overcome by how liberating it felt to be alone on the roads and to be free of my seizurey, sometimes manic kid. I didn't have to glance at him every so often in the rearview mirror. I didn't have to hand him grapes, blueberries, cubes of cheese, roast beef and chicken sausage, some of them dropping to the floor and bouncing beneath the passenger seat, only to remain largely undetected and festering. I didn't have to reach back to grab the sippy cup from my berserk child whose juicy water streams down his chin soaking his shirt to the skin. I didn't have to suddenly pull to the curb during one of his seizures. I didn't have to lurch back and grab his glasses from his fist before he gnashed them between his teeth. I didn't have to jam a towel in the door to stop him from staring at the sun. I didn't have to hear him moan and shriek and watch him flail. Instead, I just traveled along at a leisurely speed, taking in the ever-changing landscape, which is breathtakingly beautiful in any season and in all types of weather.

In slow motion, I watched hawks and jays dip and soar. I gazed across splendid glens and meadows thick with goldenrod, wild aster, cat tails, Queen Anne's lace, meadow-rue and yarrow. I saw runners and bikers and skate-skiers mounting and descending hills. I saw folks mowing lawns and tending to their gardens. I saw fishermen and clam diggers working the shore. I saw bathers wading in both calm and choppy waters. And the skies. Oh, the glorious, cloud-strewn skies.

If Calvin can keep up his longish stint of attending school (he hasn't yet missed a day), I'll definitely be going back on the roads—very happily alone.

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real boy

pinocchio. lovingly cut from an animated hunk of wood. carved and whittled limb to limb, nose to toe. squeaky knee and elbow joints and all. he feels no pain. knows how to speak. desperately wants to be real. i don't know his story well. still, he reminds me of the boy i never bore, the one who this minute is seated fidgeting and seizurey at my feet.

like pinocchio, the boy i never birthed can talk and run and leap. he can ponder right from wrong. he can read and swim, play hide and seek. he's free from daily pain and misery. he's a boy with goals and hopes and dreams. like pinocchio pines to become, the boy is real as real can be.

i remember the sonogram. the peppery image glowing from a screen. my unborn's' limbs moved as if they were hinged. like a little wooden marionette, but without strings. his legs kicked as if he'd hiccuped. then, like waterlogged sticks, sunk and settled on the riverbed of my womb. secretly, i wondered what might be wrong, his movements so awkward and lumbering. surreal. was he a bona fide boy after all? would he fulfill my coveted dreams of motherhood?

my son's mind didn't grow in sync with his form. he still walks wonky like a marionette—elbows up and crooked, knees nearly knocking, flat-footed, toes drifting inward. but though calvin in many ways is not a real child in the same sense as some of yours (he lacks the ability to do nearly everything independently) he loves and cries and wants and needs and aches and feels. he can't do what pinocchio the wooden puppet can, but i wonder if—and i wager—my boy yearns to be real.

sublime

perusing through eight thousand pics. i fall upon an image. a still shot from a favorite film. in it, the celestial body for which the film is named, melancholia, hurtles toward the earth. its gravity, enormous. its shadow, broad and soft and inescapable. its weight, disabling, capsizing people and their relationships. 

years ago, i first saw the film. since then, calvin has suffered hundreds of seizures, including one this morning on day six. he has ingested thousands of pills. suffered painful and debilitating side effects. swallowed gobs of bitter cannabis oil, syringe by syringe.

i do a double take. see myself in this mother. her burden. her predicament. her place in the surrounding world—its dark sky and eerie light. the effort and worry etched into her face. no clear path forward. every step met with resistance. hard making progress, her gains erased. impossible slog through the mire that is her life. the weight of her child sinks her. his helplessness. her sheer effort just to keep him afloat. their back to a beautiful and familiar vista—a good and peaceful life left in their wake. and yet they manage to make headway, though really going nowhere.

even as the sun shines on her face, there is anguish in it. it's a bittersweet reflection of life with an exceptional child like mine—of yesterday and last night. of the past seventeen years. a lifetime. the image is dark and sorrowful, and yet somehow—in its raw, honest and gorgeous human depiction—soft, forgiving, intrepid, sublime.

Still image from the film, Melancholia