resonance

How happy I am to be able to walk among the shrubs, the trees, the woods, the grass and the rocks! For the woods, the trees and the rocks give man the resonance he needs.

—Ludwig van Beethoven in his letter to Therese Malfatti, 1808

photo by Michael Kolster

progress by shades

Though my son Calvin's seizures and the three powerful antiepileptic drugs he is taking seriously impede his development, he is making progress.

Today, Calvin traipsed down the sidewalk in front of our house to Woody's place three doors down, which is the farthest he's ever gone, and even then he's only done that a dozen or so times in his life. He's a homebody and a stubborn little bugger, but it seems that since we've reduced one of his seizure drugs slightly he's a bit more willing to step out of his comfort zone and amble down the block. This time I convinced him to walk past Woody's house then on to Mike's place and up the front steps to buzz the ringer. Mike, who is in his early nineties and was widowed a couple of weeks ago, wasn't home to receive us. If he were it probably would have been the first time he'd have seen Calvin walking.

On our way back home we were greeted partway by a gimpy Rudy the dog who had, for the most part, stayed in the yard awaiting our return. And to think Calvin did all of this walking a few hours after having given five full vials of blood for testing, during which, by the way, he was a total champ.

And when I tell Calvin, upon reaching the goals I set out for him, that mama is so proud of him, a big smile spreads across his face. Perhaps he, too, might know he's making progress, albeit by shades.

at the fair

Tattooed women in cut-offs and tank tops pushed fat babies in strollers. Scruffy men in t-shirts and sneakers trailed behind toting paper baskets full of fried clams and blooming onions. A young green-eyed Hispanic man working a midway ride looked on somberly then finally cracked a smile when he saw mine. He reminded me some of a boy I had a crush on in my youth.

Watching Michael weave through the crowd bridling Calvin with his harness, passing carneys with cigarettes and leathery skin between rows of shacks boasting fried dough, candied apples and hand-cut fries, made me think of carnivals of long past. I imagined the freak shows in which deformed people were paraded like animals in front of gawking crowds. I wondered if my legally-blind, disabled, non-verbal, spastic kid might’ve once drawn a crowd of voyeurs at this type of event. As it was, I felt the weight of eyes fall upon us, some curious, some compassionate, as Calvin staggered and stalled within Michael’s careful grip.

In the shade of the horse arena, while feeding Calvin a snack, we watched an eight-year-old boy steer a pony-drawn buggy to a third-place finish. The boy sat so upright and steady in his crisp blue shirt and vest under a cowboy hat almost too big for his head. I couldn’t help myself from weeping.

Every summer when we visit these agricultural fairs I wonder if, by the following summer, Calvin might be walking on his own, might be seizure free, might be off at least some of his drugs. And every summer is met with disappointment of the reality that Calvin hasn’t much changed. Other nine-year-olds there were likely milking cows or chasing pigs or brushing horses or riding bumper cars or eating cotton candy. Ours, who seemed oblivious to the animals and the rides and the games, was in a stroller filling his diaper.

The sun beat down on us as a cloud of hay dust flew into our eyes. It was as if the universe had tossed it at us in the same way it had when Calvin was born missing a significant portion of the white matter in his brain. I squinted and wiped away a sandy tear, and as we headed back to the car I looked up at the clouds in the sky, which thankfully took no notice of me, and hoped that next summer things might be better.

how things turn out

Things turn out best for the people who make the best out of the way things turn out.

—John Wooden

photo by Michael Kolster

familiar oddities

He pranced and cooed and shrieked and flapped, all in a pair of colorful swimsuit trunks. Even in August, the river, the mouth of which mingles with the ocean, felt frigid. The boy dipped his toes into its clear green-blue as it lapped up onto the beach. The scene was delightfully odd to witness. “He must be about fifteen, right?” I’d said softly to Michael as we strolled down the shore, the boy receding behind us chirping and cackling, the beach stretching out in front and the sky painted in gossamer clouds.

The youth, who was dark blond, lanky and nearly as tall as I, was monkeying around like a toddler, excitedly racing back and forth between the water’s edge and his mother who was spreading out a towel on dry sand. I wanted to look back but I didn’t dare gawk. Seeing the teen made me imagine how Calvin might be at that age, made me wonder if in four or five years he’d be walking by himself, if he could play at the beach without eating sand and driftwood, without flopping onto the ground in a fit, without staring incessantly at the sun. I wished as much.

Michael and I ... we’ve developed radar of sorts, the kind that can spot developmentally disabled kids—kids I like to call extraordinary—from a mile away. There’s a warm, knowing feeling when we do, a comprehension that we’re not alone on our journey raising Calvin. “Did you see that kid?” I find myself asking when we exit the grocer or cross the street or enter a diner, and we smile at each other, at our glimpse of familiar oddities, but also in solidarity of the heartache, the burden, the ridiculous joy, the suffering, the marginalization of it all.

And the parents of these boys and girls, ones with Autism or Angelman’s syndrome or Down syndrome or Rett’s syndrome, these kids with epilepsy who, because of their seizures, have lost their opportunity to live a normal drug-free life, are doing it. They're doing it happily and are seemingly well adjusted. But they’re not doing it alone, and hopefully they're cognizant of that and have others who they can lean on when the going gets rough, like we do.

We continued down the beach and back watching child-free couples walking hand in hand and teens playing beach Ping-Pong and girls with tattooed shoulders sunning themselves with their dogs and dogs peeing on sandcastles and sandcastles melting into the surf. And I thought of Calvin at home with his nurse splashing in his tiny inflatable swimming pool, having his diapers changed and his pills spoon-fed and his body bathed and his tumbles intercepted and his little neck hugged and somehow, without him there, I felt all alone.

friday faves - walking on air

From last September.

The Brooklin air was hazy, moist, tingling. The fog set the sky aglow beneath dark clouds, the water’s surface glinting like foil at the horizon where the morning sun slipped through a wedge of open sky. Very simply, it was beautiful and plenty warm, so the four of us set out on a walk.

Calvin held both of our hands as Rudy sniffed and explored the fields flanking the sandy path. I was thrilled to the point of tears that Calvin was walking so well. “I feel so free,” I said to Michael with a quiver in my voice, “like the first time I drove a car without someone in the passenger seat.” It was like walking on air. He understood the feeling of liberation that comes when a child begins to walk hand in hand with relative skill and endurance—enough to leave the stroller behind instead of lugging it along everywhere we go just in case.

Every twenty-five or fifty yards our boy balked—stopped to be picked up. And so each time Michael hoisted him up to his hip where Calvin yanked his ears, pulled off his glasses and slimed his face with copious open-mouthed kisses. After a few minutes of rest we’d stand him up like a little toy soldier, grab his hands tightly in our own and march on. The tide was out and we managed to make it all the way to our favorite pair of trees clinging to hunks of soil atop a granite slab. The last time we were here Calvin had to be carried the entire way. That night he’d had a seizure. Later we learned pneumonia was the culprit. Yesterday was the first time since then that we’d seen those trees, which hadn’t grown as much as I’d expected. Their survival seemed to hang by a thread, their disintegration dependent upon the frequency and severity of storms eroding their foundations. Just like Calvin, I thought, his survival—his ability to thrive—in great part due to the dampening down of seizures that thunder through his little brain.

But the trees were still there and seemed to be flourishing, weathering the storms and tides well. It seemed fitting that Calvin, after six years, was able to walk amongst them as their brother. And as we headed home across a crushed-shell path I felt cool droplets on my face. But it never rained. Instead, the sun broke through the clouds and warmed our backs as we walked hand in hand with Calvin up the rutted path that stretched out before us.

i heard about

He said the little boy went to school one day. That day the boy had a seizure. The next day the boy realized that he had lost all of his friends.

I’ve heard it before, heard about the college student who suffered a five minute seizure face down on the sidewalk as people hurried past stepping over her convulsing body. No one came to her aid.

I heard about the man who had a seizure in the boardroom, his colleagues later laughing behind his back.

I heard about the teenager suffering from epilepsy and depression—a common combination—who refused to take her meds, suffered a seizure while driving, rolled the car with all of its passengers, survived to tell about it yet still doesn’t take her meds.

I heard about the boy whose seizures returned while at boarding school, whose teachers hadn’t informed his mother, whose mother let him go swimming during a visit home, who drown while having a seizure.

I heard about the woman who, when her daughter was diagnosed with epilepsy, lost all but a handful of people she thought were her friends.

I heard about the woman who broke her toes against a wall while seizing.

About the girl who broke her nose, broke her teeth, broke her spirit.

About the woman who fell down a flight of stairs during a seizure.

About the mother who lost her only son and the father who lost his daughter and the men who lost their young wives to Sudden Unexpected Death in Epilepsy.

I heard about the man who lives each day in the fog of his twenty-three seizure medications.

About the woman who told no one, for fifty years, that she had epilepsy for fear that she would face discrimination.

About the boy who drown while having a seizure in the bath.

About the child who went brain-dead during a prolonged seizure.

About the girl who went blind because of a serious reaction to an antiepileptic medication.

About the girl with epilepsy who, in fits of drug-induced rage, scratched her mother bloody.

About the parent who refused to tell anyone, even the teachers, that her child had epilepsy and what safety precautions to take if one occurred at school.

About the doctors who tell their patients that they have a seizure disorder but fail to tell them that it's the same thing as epilepsy and that the disorder can be fatal.

About the child with epilepsy who had the entire left side of his brain surgically removed.

About the boy who endured several dangerous induced comas in an effort to thwart near constant seizing.

About the children born healthy and vital then succumb to epilepsy, suffer hundreds and thousands of seizures, endure the wrath of scores of antiepileptic drugs and their side effects and fall into a state of serious mental deficit.

About the boy—my boy—who began having seizures at eighteen months, who has tried and failed nine anticonvulsant drugs and two dietary therapies, who cannot walk by himself, cannot utter a word, endures heinous drug side effects and still suffers the seizures.

I've heard it all before. So, now, have you. Go out and tell it to the world so we can find a cure and an end to all of this suffering.

Give to cure epilepsy: http://www.calvinscure.com