unease

Again, I lie awake hours before daybreak. The dark of night seems to magnify my angst. When for various reason I can't sleep, I worry about whether Calvin will seize. Under the covers, I flinch when Nellie yelps in her sleep. I fret about the list of things I need to get done that I don't seem to have the time to do, the things that have piled up during the five-and-a-half weeks that Calvin didn't go to school—sweeping, mopping, dusting (what's that?), writing, reading, researching, filing, calling. I lie in bed, my mind racing, pondering the troubles of the world: war, famine, genocide, waste, poverty, pollution, misogyny, racism, corruption. I think of the human impact on climate and the havoc it is wreaking on our gorgeous Earth. I consider refugees desperate to find better lives for themselves, whom the people of our town and nearby ones have graciously—and some begrudgingly—received.

The other night, after I heard the rain begin to fall, I laid there on the brink of exhaustion and yet buzzing, lamenting the plastic microbeads, bags and bottles choking the ocean, the single-use plastic caps and containers washing up on beaches, the straws and swizzlers and six-pack holders, the syringes, balloons and latex gloves—you name it—that sacred sea life is ingesting and strangling on as we dream. I pondered the tons of toxic materials being released into our rivers, air and seas, and the sleazy politicians who are making that more possible. I grieve the burning of the Amazonian rain forest, the flushing out of its creatures and native peoples. I consider the rabid appetite of greed.

Yes, I lay awake in a warm bed in an ample house having filled my belly with delicious food my husband cooked, thinking about Yemenee people starving to death, and Rohinga refugees being forced back to their tormentors, and hurricane victims having just lost loved ones, homes and belongings. I consider how effing lucky I am, and wish I had the means, like a handful do, to fund everything. I lament that, in this nation of abundance, our fellow humans still live under cardboard boxes or on cold sidewalks while billionaires and certain politicians continue to enrich themselves at the expense and exploitation of everyone else.

While scrolling through my photographs yesterday, feeling weary of the world and of all-things-Calvin, I came across some I'd taken at last year's Bowdoin student art show. The small, framed piece that hung on the far wall of a room where my husband taught a class called Art and Time, was titled, Receipt for a Sunday and the Things Carried There, by a talented and ambitious student, Blanche Froelich, class of 2019. Rereading it reminded me to be grateful, humble, thoughtful, and generous to others; none of us live life without our own struggles, big and small. And the night is not the only time we feel unease.

Detail, Receipt for a Sunday and the Things Carried There, by Blanche Froelich

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.

breathless

The sun, readying to set above smoky embers, kicks up a cool breeze. Gusts skip across the fields, flipping skirts like flags and ballooning blouses in a kaleidoscope of oranges, blues, reds and ochres. Ties fly sideways. Hats tumble off backwards. The diners, this year's college students, are dressed in their late-summer best—vibrant frocks and jumpers, slim sport jackets and slacks, suede loafers and strappy sandals. They arrive in clusters on the heels of convocation. Some run and hug each other. One squeals and jumps piggy-back onto another. Others stroll hand in hand, in pairs and trios. I feel their joy quite palpably, and it makes me smile ... and wither.

As I lead Nellie away from the flock, shielding my gaze from the sun's glare and from the unabashed gleam of hardy kids in their teens and twenties, I bow my head and cry. I weep lamenting my son Calvin's misfortune and his inability to one day experience such pomp and circumstance, such brotherhood and sisterhood, such revelry. I pity myself, too, lamenting my first few years of college which were so very different from this—the enormity of the university, the lack of good council, my disconnectedness, my disappointing swimming career, my disorientation in a sea of forty-thousand students, my lack of forming lasting deep connections.

I watch as these eighteen-hundred youths commune at rows of tables amid a sunny field, some of the best and brightest, these lithe and curvy, stout and muscly, black, brown, pale and white bodies speaking with various accents from around the nation and world. I want so much for things to be different. I want Calvin to suddenly speak and read and write and philosophize. I want him to look up into the night sky and wonder, want him to gaze across a sea, yearning for distant places to visit. I want him to hear and speak different languages, take risks, dream. Thinking of all these lost possibilities makes me breathless.

On our way home we walk against what seems like an endless stream of dapper students. Seeing them, I waffle between delight and despair. Out of the strolling throng pop two familiar faces, J.P. and Nate, two of Michael's former photography students. They each embrace me, smiling, before disappearing back into the crowd. For a moment I glow, knowing were it not for Michael's job as professor I'd never have met these worldly, kind and gifted souls. Then a young man walks past who reminds me of our friend-brother-son who took his life this time last year, and the one who lives nearby and yet has vanished, and I wonder where the others will go. And as I unleash Nellie to run the last few yards toward home—her understanding and ability seemingly far surpassing Calvin's—I remember his limitations and the ones which tether us to him so tightly, and my breath is whisked away once more.

Photo by Michael Kolster

shadowcasting

On the last night of August, as we sat with new and old friends around a fire in the dark garden, Calvin was burning up in his bed. From the baby monitor in my palm, I heard him rouse. When I went to check on him, his skin felt hot. His thermometer read 102.4 degrees. I stripped him down, gave him an acetaminophen suppository, then, as I brushed my teeth, I quickly went outside to wish our guests goodnight. Soon after, in bed next to him, I felt the embers of Calvin's fever subside over the hours.

I'm grateful that August is behind us, and with it its five grand mals, ten focal seizures, one pain episode—eleven days of this misery in all. Today, I feel autumn, and I wonder what September will bring. Tomorrow, if Calvin is feeling better, he'll be off to the high school to traipse bobble-headed up and down its halls. He'll be mingling with students almost twice his weight and nearly half as much as tall, kids who are light years ahead of him developmentally, kids who can speak and read and reason and judge.

As I listen to the crickets, the early evening sun casting its long shadows on a garden which, due to my inability to control Calvin's condition, I've worked so hard to control, I am cautiously optimistic about the year to come. Calvin will have a new teacher and new ed techs at school. The administration and staff have already gotten off to an impressive start, meeting with me and Michael for over an hour, professionally and compassionately addressing each and every one of our concerns.

Meanwhile, the college students are returning. We see them in the field behind our home, hear their riotous joy through our open windows at all hours. Their presence is bittersweet. While I bask in their youthful glee, their physical and mental prowess ablaze in stark contrast to Calvin's, I am reminded that Calvin will never enjoy the autonomy of cleaving. Michael and I will never savor that chapter of parenthood. Instead, our son will forever exist in our and other caregivers' shade and shelter, much like an infant or toddler, no matter how big he'll grow.

But as I lie with him, his skinny arms around my neck pulling me in, I tell him how sweet and dear he is to me. And like a dark August behind us, I hope one day his epilepsy sunsets, casting only shadows, leaving only traces and faded memories of unpleasant events.

letting it out

My dear friend Elizabeth Aquino, whose adult daughter Sophie has epilepsy, writes the exquisite blog a moon worn as if it were a shell: where parenting, disability, politics and poetry intersect. In 2018, Elizabeth expanded her reach, becoming co-producer of a podcast called, Who Lives Like This?! The Grit and Grace of Caregiving, in which she and her co-host, Jason Lehmbeck, interview caregivers. It's a compelling venture in which Elizabeth and Jason ask thoughtful questions and offer their own insights on caregiving, which are often humorous and sometimes sorrowful and bleak. Last week she and Jason interviewed me about my experience raising Calvin and writing about it. They titled the podcast and corresponding blog, Letting it Out. I hope you'll tune in and share.

landon's gift

Again, our day began at three a.m. with the arrival of another focal seizure, the first of two, this one several minutes long. With the help of some extra homemade THCA cannabis oil, however, Calvin had improved by eleven, and so we set out for the Windsor Fair, a town or two away from the fair we went to a week ago.

Calvin did far better this time, even holding our hands and walking, though wonkily, willingly at times. Throughout the day we zigzagged our way between sheds of lounging cows and goats, cages of enormous sows with their week-old suckling piglets, and a raucous avian barn. All the while Calvin seemed to take it in, gnawing happily on his rubber chew toy and nibbling on snacks I'd cut up for him.

Several times I watched children and adults gawk at Calvin as if he were some freak in a carnival sideshow. When this occurs, as it does anytime we're in public, I feel a mix of sadness and anger. Sometimes I'm moved to act spitefully. I'd like to think they don't mean any harm; maybe it's human nature to rubberneck at a spectacle. Still, I often feel like an alien with my sweet little peculiar Martian, orbiting on the margins of things rather than feeling an integral part of the larger world. 

When we had seen enough of the sights, we stood in line to get an ice cream cone. A handsome, dark-haired boy approached us and asked if Calvin might like to have the stuffed animal he'd won in a midway game. I fumbled to answer, fairly certain that Calvin wouldn't respond to such a toy, his go-to playthings being hard plastic and rubber ones. But I was compelled to accept the boy's kind gesture because I remember well what it was like to be his age.

The boy introduced himself as Landon. I suggested we try handing the stuffed animal to Calvin to see how he'd respond. Landon crouched down closer to Calvin offering him the toy, speaking to him directly and asking if he would like to have it. Immediately, Calvin hugged the larger-than-life emoji and began mouthing it with fervor. We were all amazed and happy when Calvin received the gift so emphatically. 

Landon, who is as sweet a boy as you'll ever meet, and worldly beyond his years, told us he'll soon be thirteen. We greeted his dad and grandfather who were at his side, and as I spoke with Landon, his father told Michael that he had no idea Landon had planned on giving away his prize.

I took a quick picture of our newfound friends before shaking their hands and saying goodbye. After they turned to leave us, I looked up at Michael and noticed that he'd gotten quite choked up. Seeing his emotion, I began to weep openly at Landon's selfless gesture.

Random acts of kindness like these make our world go round. No doubt I'll rest my head on my pillow tonight thinking of Landon and how, if things had turned out differently, maybe Calvin would have become as extraordinarily thoughtful, fearless and empathetic as he.

If you are reading this, Landon, I hope you know how deeply you touched us and how much you made us feel welcome, important, and included, while so many others look at us as if we don't belong. You yourself are the gift you gave to us, one far larger than the sideshow prize that left your arms. How very lucky we are.

hope, dread, want

The day began large. Having been the second one in a row of seven that Calvin didn't wake to a seizure, I felt some semblance of hope. But as the day wore on, hope became dread, and dread became want.

Around noon on Sunday, we made our way north to the Union Fair. The hour-plus drive felt long, winding through Maine's back roads where farmland sprouts double-wides and barns, dilapidated antique stores, tractors, graveyards, and at least one shop devoted to selling guns. I tried to stave off a bit of anxiety amid the unfamiliar surroundings so far from home, tried focusing instead on feeding Calvin and thwarting his incessant attempts to stare at the sun.

It was a hot day to attend a fair, but the cloud cover helped for a spell. A nice lady selling tickets from a kiosk let Calvin in for free after she saw him spastically flailing in the backseat of the car. From the get go, Calvin was stubborn when asked to walk, a repeat of the day before. He'd take a step or two before collapsing in our grasp, getting us nowhere. Thankfully, we brought his stroller.

The highlight of our day's adventure was a ride on the Ferris wheel. This was a first for Calvin, for us as parents, and one I'd dreamt of for years. Calvin wilted in the sun waiting to board, and during the wheel's five revolutions, he didn't seem to register much of anything. He squirmed and squinted exhibiting discomfort. While Michael held him in the shade, I took in a bit of my surrounding world. The sky proved spectacular—a mix of puffy white clouds and wispy ones met the horizon. Compared with the West, this small part of Maine, save some rolling hills, is flat, with nary a vista to take in. In this landscape with its tall white pines and oaks, it's easy to feel stuck. Needless to say, at fifty to one-hundred feet, I ate it up.

Because of Calvin, we cut our fair-time short. The drive south felt more relaxed, any apprehension now behind us. Though we were at the fairgrounds just over an hour, and though it was far from Calvin's best performance, we had, I think, accomplished something, and it felt good to be heading home. On the drive, however, Calvin became increasingly agitated and, at one point, he let out a bizarre screech. I knew this was a bad omen, causing me some dread.

Once home, Michael gave Calvin a bath while I took Nellie on a short walk. When I came back, I heard Calvin upstairs crying as if he were hurt. After his bath, our boy had devolved into what I've previously described as night terrors. Calvin was writhing and crying, stretching and recoiling, shrieking and moaning as if he were being tortured. Michael and I guessed he had a migraine, so I gave him an acetaminophen suppository. Lauren stopped by, came upstairs and gave us some much needed tenderness and moral support. I shared my belief that these episodes are latent benzodiazepine withdrawal side effects. I'd read that Stevie Nicks, having withdrawn from years of prescribed benzodiazepine use had said that her detox felt like somebody had opened up a door and pushed her into hell. This is how Calvin sounded and looked.

After twenty minutes, when the acetaminophen didn't seem to be helping, I gave Calvin his nighttime dose of homemade THCA cannabis oil, except this time I gave it to him rectally. Within five minutes he was sound asleep. Half an hour later he woke up enough for me to give him the rest of his nighttime cannabis oil and his Keppra. He slept peacefully the rest of the night.

Unlike most seizures, rarely do I see with any clarity these pain episodes coming. In the past they've been while he's asleep, leading me to think they are night terrors. Now I know they are not. Regardless, they are dreadful. In the moment, I want for nothing but for Calvin to be at peace, to be set free from the torture and misery consuming him. I want for him to feel serenity, no matter how brief. I want him to feel the calm of looking into a sky with tranquil clouds which touch the horizon. I want him to feel hope, not dread, not want.