A train whistle awakened me, the rumbling of its wheels somehow comforting, yet simultaneously mournful in its reminder that I'll not soon be boarding one and taking it places. Like those wheels, my mind turned in circles with a touch of nighttime angst. What will the future bring? How long will I be confined to this place and this difficult task of being Calvin's mother, nurse, teacher, companion, aide? Will I ever again step across borders to explore great unknowns?

Earlier, at the edge of a bonfire, I stood, fists shoved into my pockets, fighting the cold. The fire at my feet warmed my thighs, Lauren's hoglöggwhich I sipped from a glass mug, my gut. Friends and neighbors had gathered to celebrate the solstice. Breaths and words left their lips in frosty puffs. Dried onion skins, charred white, floated up from the fire like ghosts. Jupiter and Mars peered down on us.

Back at home, before the bonfire, my boy had been thrashing in bed, suffering some sort of discomfort. I decided to give him some extra THCA cannabis oil, some drops of herbal rescue remedy, plus acetaminophen. Then, I laid him back down again. The concoction worked to calm him, and he seemed to fall asleep as soon as his head hit the pillow. Worry followed me anyway.

Later that night, as I laid awake listening to the train cruise through a nearby neighborhood, I wondered if I'll have to take care of my son for the rest of my life—or for the rest of his. It's a thought I try as best I can to keep at bay, its consequences daunting—the thought of this traveler in an immovable life rooted in what has already been two decades spent in the same nation, same state, same town, rarely escaping in over eighteen years to California, New York, Seattle. The alternative is just as frightening.

And then came yesterday's new moon and raging storm, which brought high winds and sideways rain. In just hours, the temperature plunged from fifty-four to just fourteen degrees. The power went out in the afternoon. Luckily, last year we got a generator, so we had light, refrigeration and heat. Still, I was awake last night from midnight until after three o'clock a.m. worrying about the thousands of folks without power and heat for their homes. I padded downstairs to check my phone in case any neighbors had texted me looking for help to warm their bones. Thankfully, it seemed everyone was safe and sound.

When I crawled back into bed, I was reminded of the train I heard on the night of the solstice, and the anxiety and self-pity I had been feeling about our impossible situation with Calvin. I thought about the isolation and limitations that come from caring for Calvin, but as I thought further on it and considered our fortune to be warm and dry amid the crazy wildness outside, I began to see the riches that have come with having had Calvin. Had it not been for him, I might never have begun writing. Perhaps I'd never have begun quilting, or baking again, or running. No doubt, had we not moved to Maine where he survived—against nearly every odd—his premature, medically-complicated and fraught birth, I might have missed developing scores of deep and loving friendships with doctors, nurses, farmers, carpenters, teachers, ed techs, mothers, fathers, marathoners and other runners, professors, deans, students, artists, other writers, journalists, restauranteurs, film makers, builders, bakers, octogenarians, and dear, whiskey-swilling neighbors.

So, in the early morning hours of our secular Christmas Eve—a holiday to which Calvin is oblivious—as the storm still tossed around huge boughs of white pines—the same ones I rested my eyes upon in the first days of writing this blog twelve years ago—I realized how ridiculously rich my life really is, even in the confines of these four walls with my little ball and chain.

Photo by Michael Kolster


knock on wood

Yesterday, things were not looking good: outside the wind and rain were raging; Calvin had a snotty nose and was running a low-grade fever; the full moon was on the rise. The good news was that it had been twenty-five days since his last grand mal seizure.

Michael and I crawled into bed just before seven—a record early one for us (it's our version of sleeping in.) I read a few, short chapters of Elizabeth Strout's new novel, Lucy By the Sea, before drifting off to sleep. It was not quite seven-thirty when I took a last peek at the clock.

Ten-and-a-half hours later, I woke up to Calvin making his groggy morning coos. He hadn't had a seizure! I was so stoked.

So, Calvin, who has been titrating up on a new drug, Xcopri (aka cenobemate), since November a year ago has had just three seizures—albeit all within twenty-six hours of each other—in seventy days. That's almost a personal best. He's on track to have just over half as many grand mal seizures this year as last (about 38 compared with 72 in 2021) and he hasn't had any obvious focal seizures since last February compared with over twenty last year. I owe this huge improvement to the Xcopri. I should also mention that, for weeks now, I haven't felt like I've had to give him any extra prophylactic doses of my homemade THCA cannabis oil, something I was doing almost daily a couple of months ago.

My hope is that Calvin can soon get to a place where we can either switch his Keppra to its cousin, Briviact, which, I'm told, is just as efficacious and has fewer behavioral side effects, or we can wean him from the Keppra all-together (because it doesn't seem like it does jack shit. One day, I'd also like to wean him from the cannabis oil so that he is getting less drug treatment. I'm hoping his body doesn't habituate to the Xcopri. I'm holding onto hope that it might be the silver bullet Michael says doesn't exist. Eternal optimist, I am.

Having said all that, tonight Calvin is still sick and stuffy and running a low-grade fever. I just put him to bed. If he makes it through tonight without a seizure, it'll feel like a miracle. Cross your fingers. Knock on wood.


back in time

"Do you love me?" I ask from the far side of the butcher block, a question to which I know the answer, but which I ask periodically, just to be humored.

"Yes. More than anything in the world," he replies, as he looks at me with intent.

A bit incredulously, I follow with, "Even Calvin?"

"Yes," my husband answers, "but he's catching up."

The expression I give lets him know I wonder what he means.

"He's becoming more lovable," he says.

"Like when he was a baby," I add, "when he was feeling good ... he was all happy and lovable. It's the drugs that have fucked him up."

After a pause, I go on to say:

"Some doctors are assholes," thinking about the bad ones—the one who needlessly prescribed Calvin's first benzodiazepine and the ones who prescribed extremely high doses of too many drugs—sometimes several at once—that didn't work and that fucked him up, caused him to be and remain so impossibly restless.

Michael nods his head.

"I wish we could go back in time." I say, wishing I knew—and could have employed—then what I know now.

But I can only go there in my memories and dreams.

One-year-old Calvin, March, 2005