riches out of misery

a reader asked me recently, how do you do it? how do i care for a significantly disabled child with all the burdens, including a chronic condition? in response, i cited the brutal years of extreme competitive swimming and how it steeled me. i cited my strict father's wicked work ethic which i inherited. i told her how much i adore my impossible son. i considered how much i love a challenge. i thought about my supportive spouse. then I reflected on mindfulness as both meditation and distraction. like focusing on the way this morning's layers of sleet felt as if i were trudging through coarse kosher salt or sand at the beach. how the sleet sounded and felt when it hit my jacket and cheeks. how the birds in the trees seem to be announcing spring. how being the only human in the trails and on the road can feel both liberating and lonesome. how the trees have a tinge of silver as ice clings to their limbs and needles. how their branches sag under the weight of it all as if in solidarity with me. how still pools of water reflect the surrounding world, sometimes with heightened clarity. how luxurious it feels to have my son linger in my lap peacefully, even though he's ailing. how all these seemingly insignificant things, plus gratitude—for family, friends, kindly strangers, good fortune as well as struggle, the ability to write for myself and for avid, compassionate readers—can make riches out of misery.

all-nighter

I didn't really see it coming, at least not completely. Calvin had had a good day; though restless as usual, he was quiet, smiling at times, eating well. Michael and I had just finished dinner in front of a rolling fire. We had settled into our books (I'm in the middle of reading Jane Eyre) while FIP French radio played in the background. Just as I was luxuriating in a breadth of bluesy music and the soothing voice of the female DJ, I heard a screech come through the baby monitor. Though it had only been two days since Calvin's last grand mal, I knew he was seizing. I took the stairs by twos.

When the violent fit was over, our poor boy again had some trouble breathing. Whether excess fluids are obstructing his airway or his throat is constricted by aftershock spasms, it isn't clear. The good thing is he rarely turns blue during seizures anymore. Though it was only eight-thirty, I brushed my teeth and slid into the small space next to him in his safety bed. Thirty minutes later he woke quite agitated, his heart racing, his clammy fingers knitting in a panicked frenzy. This went on all night, every thirty minutes or so. Before midnight, I gave him extra THCA oil, but to no avail. I patted his back to help him burp, held him in my arms, stroked his face, kept him from careening out of bed. Somehow I managed to get a little shut eye before his second grand mal at half past three. Shortly thereafter, he settled for a bit, then woke again when he wet the bed. I scooped him up best I could using my legs and not my back to lift his eighty-five-plus pounds of mostly dead weight. His hands were frigid, but his face felt hot. His teeth were chattering, so I checked his temp, which was normal. I changed his diaper, and Michael, who had since woken, changed Calvin's pajamas and put him back to bed. I crawled back in next to him. Half an hour later he was up again, trying to bang on the wall and patting the side of his bed, so I gave him his morning seizure medicine early, hoping he'd settle. He didn't.

Much of my time awake I spent trying to think of another strategy to curb Calvin's seizures. I could increase his one pharmaceutical, Keppra. I could decrease the THCA since I've never really tried that; after all, high doses of any antiepileptic drug, even cannabis, can exacerbate seizures. I could try the Palmetto Harmony CBD oil again. I have an unopened bottle of it in the refrigerator; years ago, Calvin went forty days without any grand mals on just twenty milligrams of the product. However, when it quickly seemed to lose its effectiveness, we eliminated it from his regimen.

It's maddening, this epilepsy. Nothing I do seems to help quell his seizures. My boy suffers headaches, lethargy, restlessness, agitation, bitten and bloody cheeks and tongue, insomnia, panic attacks. My guess is he also experiences auditory and visual disturbances of some sort. I've little doubt that he's been ruined by the drugs which I believe are the root of his disquiet. For years he has not been able to sit still in our laps for longer than a couple of minutes unless he is sick or postictal. To be honest, the future looks bleak, which is not to say I've lost hope.

Today, Calvin is resting and recovering in bed. I'm perched on his changing table writing and wishing we were able to take a car ride. He hasn't had much to drink and nothing at all to eat. He's got dark circles under those gorgeous sand-and-sea eyes of his. There's every indication that this spate of seizures is not over. I hate to say it, but we may be in for another all-nighter.

One such day last summer

in the dead of winter

Just another Groundhog day in a runaway pandemic—cooped up with a nonverbal kid who suffers a severe and chronic condition. Waiting with bated breath for a covid vaccination. Unsure why our son's not yet able to get it. Feeling the need for a shot in the arm myself, both literally and figuratively. This pandemic has laid hardship on top of hardship. Everyone has their struggles, is treading water in some way. I ache to see familiar faces, to hear from people, to touch and hug loved ones. 

Driving around to pass the time, which has expanded like elastic in this pandemic. Creeping along at twenty to thirty miles an hour drinking in the scenery. Studying the colors of a cloudy day in the dead of winter: white, jade, chestnut, charcoal, stone, pine, pewter, juniper, straw, bronze, rouge. Subdued yet beautiful. I must remind myself to be mindful. Appreciate the mundane details. Especially in February in Maine.

Turning up the volume on songs I grew up with and ones much newer. The musicians croon about love, heartache, dreams, loss. Sometimes I sing along until my throat feels swollen. The tunes send my mood up and down like the lonely roads we travel along. There are moments when I feel like weeping. Sometimes I do. Life is a roller coaster. So many hills and hollows provoking excitement and unsettling feelings, yet seemingly leading nowhere. I even keep writing about the same humdrum stuff hoping to glean or give something new. Not sure if I do. Still, life can be fascinating in its surprises and challenges. And at least I can still dream and feel deeply.

I reach back to give my son a grape and he grabs my hand just to hold it. A smile spreads across his face. Even with his fuzzy little mustache, he's cute. He's in a good mood despite the grand mal he had two mornings ago. For the former, I am grateful. The latter can go to hell.

Thinking about yesteryear, I get a text from a dear friend whose wedding I was in twenty-three years ago. Another lifetime. Back when days seemed more fluid, pliable, full of hope and opportunity. Back when the California sun made getting out and around so much easier than here. Maybe I'm fooling myself, but I don't think so.

In the dead of winter with another storm looming, the optimist in me sets my sights on warmer weather. We're headed in the right direction. At a crest in a snaking lane I look to the horizon over a body of water and see a section of sky where the sun glows through. The water is nearly the shade of a tropic lagoon. Blue and green, colors of spring. The time when bodies thaw and can move more easily. My brother tells me we may be seventy percent through the pandemic. Like me, he sees the glass half-full. Maybe it won't be long until Calvin goes back to school. Maybe soon I'll be able to escape these four walls for some sort of adventure or comfort. Maybe soon I can work in the garden. I'm aching to dig in the earth, to mow the lawn and prune. Maybe it won't be long until I'll see old friends and make new ones. Maybe one day soon I can stand face to face and embrace you.

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.

remembering

nearly seventeen years gone by. an entire lifetime. so glad it's now and not back then. remembering that devastating thirty-two week sonogram. our tiny breech baby. his brain's enlarged lateral ventricles. harsh doctor saying we need to worry, it could affect IQ. remembering wanting to punch her in the gut. strong enough to sack her but lacking the will and bad character to follow through.

twenty-four hour visit to boston hospitals. dawn emerges behind leaden clouds. highway flanked by barren trees and frozen waterfalls. black and white landscape. salt-blanched asphalt. traffic for hours. gridlock in the city. bitter cold out. homeless people with cardboard signs begging for pennies just to get by. remembering somber faces atop bundled-up bodies hurrying to work on frozen sidewalks. hardly a spot in a dizzying, corkscrew parking lot.

remembering maze-like hospital halls. antiseptic atmosphere. plastic plants and waxed linoleum floors. sickening pink walls and queazy teal upholstery. optic-white jackets scurrying about. gaudy scrubs and squeaky clogs. fluorescent lights. bells and buzzes and alarms. remembering stacks of diaphanous johnnies. seeing my naked, pregnant, sobbing self reflected in a cheap mirror affixed to a changing-room wall. non-stop appointments and yet waiting for hours. radiologists. obstetricians. neonatalologists. pediatric neurologists. phlebotomists. sonograms galore. one fetal MRI. alone in that shiny white capsule as if rocketing to mars. three-hundred images in one half hour.

blood tests. false positives. theories of platelet incompatibilities, fetal brain bleeds, blood clots and blockages. four-hour intravenous gamma globulin straddling midnight. plans for a thirty-five week cesarean. hypnobirthing no longer an option. talk of possible brain surgery to install a shunt. donor platelets on hand in case of hemorrhage. talk of possible need to assist with his breathing. anxiety. dread. fear. exhaustion. the promise of parenthood comes into question. so glad it's now and not back then.

Photo by Michael Kolster

perfect storms

Strange pandemic days. We walk in circles at home. Drive around the same back roads. I spoon-feed and potty train my teenage boy. With the latter, he's doing surprisingly well. I never thought him capable. Perhaps I need more faith in him, and in my own abilities as his coach. They say if you can imagine something, it's possible. I'd like to think so.

This is the time of year—if windless, sunny and bundled-up—two degrees feels hardly worse than thirty. I'm proof anyone can get accustomed to the cold. Michael runs 5Ks even when the mercury falls below zero. In these parts, a lot of people do. If anything, humans are resilient. Remembering that gives me hope.

On daily drives this winter, I see hawks perched on telephone poles. They search for prey in fields of grass and snow. I stop for flocks of wild turkeys strutting across the road. I've spotted bald eagles and crimson cardinals. The other night I banged the hell out of the bedroom wall trying to shoo some sort of nesting vermin. In this pandemic, squirrels have manifestly taken over the neighborhood.

Yesterday, I baked some cookies. First batch since Woody's death last summer. They came out perfect—crispy, chewy, salty, sweet. Molasses, sea salt and dark chocolate are my secret. If he were still alive, I'd have brought him a handful in a napkin or piece of foil. Like last winter, I'd be on the phone with him standing in his driveway. Pandemic style, we'd be peering at each other through his kitchen window. We'd talk of weather warm enough for drinking whiskey on his porch together. I miss him so.

We're anxious for the vaccine's arrival. It might mean sending Calvin back to school. Why kids with high-risk medical conditions like Calvin can't yet get vaccinated is beyond me. He can't keep a mask on, which is why we mostly stay at home. He's three times more likely to die from Covid than most others. Please wear your masks, people.

This storm is meant to drop a foot of snow. One car is on the fritz. Can't risk driving it in case it stalls. Michael took the other to the studio. The snow is too deep for Calvin to trudge through it. He can't build a snowman. Can't catch snowflakes on his tongue. Can't make snow angels. So, we're stuck inside at home. Anyway, it's nasty out. Wind and freezing rain coming down in sheets. At least he isn't seizing ... yet; nor'easters in pandemics make for perfect storms.