On Days When My Son's Life With Epilepsy Seems Impossibly Hard

In a twisted sort of way, Saturday morning’s seizure brought a morsel of relief, albeit fleeting, to my child. Like the mounting tension between wrestling tectonic plates, the pressure in my son Calvin’s brain seems to build until it quakes, and in the temblor’s wake we often find relative calm.

The previous morning, we’d tested the waters of our favorite cafe in the next town over. We’ve been weekend regulars there since Calvin was a tot, ducking in and clumsily weaving our way between clusters of small, round tables and wooden chairs, overstuffed sofas and flocks of coffee lovers, many who recognize us and we them, mostly because of Calvin.

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“I’ll have an iced coffee,” I said to a familiar smiling barista.

At the table behind me, Calvin spilled his cup of salted cucumber bites, then pierced the calm with his sonic siren shriek, not once but twice.

“OK, kid, one more time and we’re outta here,” my husband Michael quietly warned our flailing child, who at times has little control over himself in the grip of benzodiazepine addiction and withdrawal, especially in the path of an imminent seizure.

Seconds later we were packing up only minutes after we’d arrived — a scene we’ve played far too many times before. Michael whisked our manic kid outside. Flustered, I gathered Calvin’s containers of diced fruit and sandwich, his sippy cup, backpack, bib and rag, Michael’s coffee and my half-eaten cinnamon roll.

“Christy,” the cafe owner, Tonnie, said as she approached, “don’t ever feel like you have to leave because of Calvin.” She went on to say that it’s not like he’s some kid who is simply misbehaving. “He’s part of our community.”

We hugged each other, and I thanked her and told her how much her words meant to me. As I turned to go, I began to weep. Outside, I struggled one-handed to untie our dog Nellie from a sidewalk tree when Maria, a fellow patron, came out after having seen me crying.

“Can I give you a hug?” she offered, before wrapping her thin arms around me, her delicate frame belying her soundness. She, too, told me that Calvin was part of the Cafe Creme community and that we didn’t need to worry about his behavior.

“It must be so hard,” said Maria, once a stranger, who has watched Calvin grow up amidst the crowded cafe, no doubt having seen him on days leading up to seizures and on days in the thralls of benzodiazepine withdrawal.

“Relentless,” I added, mentioning his recent string of manic outbursts and the seizure no doubt on its way.

Maria helped me clip Nellie to the leash, and we said our goodbyes. Crossing the street I spotted Michael and Calvin strolling along the brick sidewalk beside a neat row of shops. I stopped, sat on a bench, tipped my head back and closed my eyes for a spell, wishing we lived a different reality.

Saturday morning’s seizure didn’t yield the usual longterm calm, and that night Calvin had several brief, partial seizures every hour after midnight until Sunday afternoon. An extra dose of THCA cannabis oil and a dose of rectal Valium did nothing to quell the storms in his brain.

As I write this, Michael and I are holding vigil in Calvin’s darkened room, Michael in bed beside him while I perch on the changing table in what feels like Calvin’s mini hospital. Inside the air is still and close. Outside the day is gloriously warm and sunny, not too humid. I think to myself that on a day like today, which is headed into the 90s, we should be taking our 11-year-old son to go swimming or for a walk with Nellie in the cool of the woods and perhaps to Cote’s red shack for an ice cream cone. But that is the life one must give up when parenting a chronically ill, severely disabled child who, most regrettably, is in withdrawal from a drug that probably should never have been prescribed and whose dose likely never should have gone as high as it did, Calvin having suffered habituation and eventual loss of seizure control — one of the many risks of benzodiazepine use.

Instead, as I watch my son sleep between fits of seizures, retching and painful tears and, with the shade drawn against the sun, I dream — through the impossibility of it all — of what one day might be mine again, but without really knowing how.

A version of this post first appeared on Calvin’s Story.

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