“Do you think our boy’s losing some things?” my husband asks. His casual tone belies the gravity of the question.

After a 13-year remission, our son’s seizures had returned. This—whether or not he was slipping cognitively—had been the rarely-spoken-of yardstick against which we’d measured the seriousness of these now frequent movements, these long moments when all time stops and when my husband and I hold our breath as this entity takes over his brain: his body freezing, his arm curling up in slow motion into a paralyzed tableau, a freeze-frame display of a misfiring brain betraying a body. The only sound he’s able to make: a moan, a guttural “whoa.”

From a recent EEG—the test scratching out brain wave data in thin black lines—we knew that the seizures we saw outwardly were just one symptom of the disorganization and slowing of our son’s brain waves. Still, our neurologist reminds us, we don’t treat EEGs. A seizure’s only a seizure when manifested in outward physical activity, she says.

The seizures we’d been seeing in the past lasted only a few seconds. Sometimes afterwards he seemed drained, wrung out, spacey. We debate—sometimes internally, sometimes with doctors—how much they are damaging his cognition, halting his learning. We’d never forgotten the grave warning issued when he was a baby all those years ago, diagnosed with a rare form of epilepsy: when the seizures start, development stops. These were nearly constant seizures, catastrophic to a growing brain.

For a couple of years we’d felt he was hanging onto all he’d learned. Relatives would see him after a long absence and marvel at the display of skills and charm he’d flash. “He’s doing so well,” they’d exalt. “He’s so smart,” they’d coo. And mostly, we agreed.

But lately we’d been chastened at times. Sometimes T—we call him this at home, a shorthand version of his given name, Thomas, even shorter than the school name he prefers, Tom—seemed to lose a word he’d previously known, and struggle to retrieve it. He’d offer the first sound of it, nothing more, and appear to be grasping at the air around him for more. Or he’d talk around it—circumlocution—like when a speech pathologist shows him a picture of a clothes hanger and he says, “Hook them up with it.”

But most troubling, to me at least, was the winking.

Two years earlier he’d attended the first year of what would be several years of attending a sleepaway camp for persons with intellectual disabilities. With its modern facilities and good medical supervision, it was popular with a few families from our area whose kids attended year after year. T had first gone on a mini-session of two nights, loved it, and agreed to a whole week next year.

It was at that first session that the college-age female counselors, brimming with youthful energy, had taught him to wink. “We taught him to wink!” they’d brightly announced when I arrived on pickup day. And indeed they had: one of them winked conspiratorially at T, and he winked back, one side of his face crinkling into an expression of shared secrets.

I began using this as a secret signal with T. Often, especially in a room full of people like a family gathering, I’d look up to find him looking at me, reading the room by reading my face. I’d come to believe I was an anchor of sorts for him. In a complex or unpredictable social situation, he had me to help him decipher what to feel.

When I looked up and would see T looking at me, I’d taken sometimes to winking at him.  He’d wink back. I see you over there, we were saying to each other. It’s okay, we were saying to each other.

I can’t pinpoint when he stopped winking. I can’t say whether he stopped because it was too hard for him to do easily or because he didn’t want to anymore. I still try. I’ll wrench the side of my face into an exaggerated wink, and—nothing. Sometimes he’ll give a gentle shake of the head: no. I’ll try a few more times to get something going, but it’s half-hearted, like pulling your thumb repeatedly and fruitlessly down the striking mechanism of a lighter that’s not going to work.

I’ll look across the room one more time at T. His expression is flat, his smile pulled into a horizontal line.

 

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At home, the sand flies up the bluff and pools everywhere: I find it in the windowsills, mounded in the corners of doorsteps. It coats the deck, leaving behind a fine gritty wash.

The bluff we live on is eroding. Vegetation had once coated it—autumn olive, low and shrubby; scrub pines; occasional dots of dune grass that’d migrated up. All that had fallen away onto the beach in sheets of leafy green that lie piled below now. Waves break against these heaps of debris, washing it away to the north or to the south depending on the direction of the wind, scrubbing the trees to a bleached-out smooth whitish sheen, the exposed root systems Medusa-like, even elegant in their wave-blasted, stripped-down new life. Sometimes notable pieces—an exceptionally large tree turned driftwood, or a piece of a dock—would land on our beach, disappear, then reappear a few days later like a proverbial cat. Or we’d see it on one of our family beach walks to the south, recognizing it a mile or two away from where we’d seen it a few days before.

The Big Lake, as locals call Lake Michigan, is gorgeous and fierce. One day its Caribbean-shaded pale bluish green turns inky; the next, raging whitecap-topped waves, one after another, hurl headfirst against the bluff we live on. One day the surface is glass: beneath it it’s easy to pick out fossil-veined rocks, beach glass. The next, it churns with waves crashing diagonally against each other, the usual parallel pattern broken by the deadly riptide working beneath the surface—a force that each summer pulls even experienced swimmers into a grip from which they can’t shake free.

Two summers before T’s seizures came back, we’d bought a small local cottage that was in foreclosure. The economic crisis of 2008 had taken a few years to reach our area’s vacation home market. We’d been watching real-estate listings, dreaming of finding a steal that’d let us live year-round on Lake Michigan.

When our cottage came on the market at a price we could afford, we took advantage of the federally backed foreclosure organization’s caveat that first offers would go to purchasers vowing to live full-time in the home, a program intended to stabilize neighborhoods by discouraging flippers and investment buyers looking to run rental properties. We made an offer and quickly remodeled it to fit our family of four, carving out modest bedrooms for T and his sister.

We’d spend hours walking the beach as a family. A set of 75 steps led down the bluff from our front door to an expansive beach below. We pitched a tent on the beach the first summer we moved in, lulled to sleep by the gently crashing waves. We began a beach glass collection, lining our pockets with beer bottle browns, all shades of green, white, and rarely, cobalt, their edges softened by years of lake waves.

T tolerated our walks, fell into a rhythm of quiet repetitive motion. We’d make it two miles to the north or to the south, turn around and backtrack home. One summer he became enchanted with the kayak and kayaked parallel to us as we walked.

The summer after we moved in—although we would not know it until later—the lake’s water levels began to rise. It happened gradually. The first few years it was unnoticeable, unimportant. Slowly the lake rose and rose, the wide sandy beach shrinking by inches, then by feet. After five years, the big autumn storms were crashing directly into the bluff, exposing the clay underpinnings of the sandy bluff, stealing sand, and leaving large rocks behind as beach. Then we lost our beach stairs, section by section.

Later the changes happened more dramatically. One day I came home to find a large chunk of our yard—the one our firepit rested on—gone. A neighbor hired a house moving company to move his cottage back from the water’s edge.

The exposed sandy bluff face has become the target for all sorts of attacks. Bare now, the fall winds that frequently gust to 50, 60 miles per hour not only create the waves pummeling the shore, but also blast the sand off, up, away.

I’d like to say that our life with T prepared us for exactly this sort of change: unexpected, gradual then sudden, sometimes quiet, sometimes violent.

I’d like to say that we’d come to understand that the way to sure unhappiness is to linger too long on what we used to have, to cling too tightly to the way things used to be, or should be.

I’d like to say that I’ve learned not to look too far forward into the future and fear what next worst thing—with health, with the climate—may be coming.

But I haven’t learned any of this, not permanently anyway. Hard truths they are, washed away with a daily forgetting. And so we need to be reminded, it turns out, again and again, as I am now. This lesson’s in my own front yard, so close I can’t miss it.

Susan Hall is a high school English teacher who writes from the eroding bluffs of Lake Michigan, where she is at work on a memoir of her son and his epilepsy.  Other work of hers has appeared in the book This I Believe:  On Love and has been broadcast on The Bob Edwards Show; she’s also reported regionally on special needs legal planning.  In her spare time, she and her family can be found cheering on her son’s Special Olympics basketball team, the Area 24 Tornadoes.  Find Susan on Twitter @SusanCoolHall.

Photo credit Johnny Cohen on Unsplash