Nineteen years ago today—six weeks before his due date, two weeks after a sonogram revealed an alarming absence of white matter in his brain, and a week before a scheduled cesarean at Boston's Children's Hospital—Calvin came into the world during an emergency cesarean at Portland's Maine Medical Center—in the middle of an ice storm. I guess that's how he rolls.
Everywhere I go, I am reminded of how much Calvin is—of how we are—different, “other.” In the cafe or grocer, little children peel off of their mothers’ sides to come and stare—front and center, bug-eyed, sometimes sullenly—at my boy. As a kid, I would’ve responded sarcastically, “take a picture, it lasts longer.” But now, I simply gawk back at them just as curiously as their little, serious faces peer at Calvin. They’re probably thinking, what’s his problem? A kid once asked me that in the neurologist’s waiting room.At twilight several weeks ago, I stopped at the main intersection in the middle of town. Calvin was in the back seat pulling his usual shenanigans; biting his shoe, poking his eyes, happily flopping his arms to the music like a turkey. I noticed a driver in the SUV next to us ogling Calvin and looking vaguely repulsed. I gazed back at her for what seemed like five minutes before she noticed me, and then, when I caught her glimpse, I smiled. She didn’t smile back, just stared at me seemingly locked inside some paralytic, perplexed state of shock or disgust. Her handsome, oblivious teenage boy sat in the passenger seat with headphones stuck into his ears. Somehow, I felt sorry for her as she drove off.
Then, there are those who see us and smile. Some watch us fondly from inside the grocery store, Michael pushing a cart while I do damage control holding Calvin’s hands as he teeters drunkenly around displays of fruit and bottles of wine. They watch us bring our booty to the register where the clerk asks if Calvin might like a sticker and I graciously decline knowing he’d just try to eat it. They watch us move hand-in-hand through the wide automatic doors cheering Calvin along as he pigeon-toes across the parking lot cawing like some bird. They watch us load his screeching-drooly-spastic-sac-of-potatoes body into the car, buckle him up and kiss him. These precious few know something. I can see it in their compassionate eyes, hear it in their kind words. They’re the type of people you just want to embrace, or adopt and bring home, set them up in their own room with a warm blanket and a cup of tea. Often, they’re old with leathery wrinkles and moist, red eyes. Some are young and vibrant, oozing sparkling energy like a dewy chrysanthemum or a sunbeam. All of them touch me with their kind gestures that often bring a familiar sting to my eyes and a thickening in my throat. I see the same in Michael’s watery eyes sometimes, and it makes me love him that much more.
I’ve always felt different from the rest of my own family in most ways. Michael too. You know, the black sheep, the weirdos. And we like it that way. It feels good to see the world in somewhat unconventional ways, to see life through a sort of prism with all its refractory qualities, angles of light and color, shimmering, bending, dark at times. And now, with Calvin, life appears remarkably unlike anything we’ve experienced before. We’ve gone through another metamorphosis, see life through yet another filter, one that if our child were healthy, normal, we might never have known. Each year living with Calvin strips back another layer—like some withered bark or faded, brittle skin—of what we thought we knew but didn’t. Though life is hard, it’s always new and changing—we are changing—and it feels good, right. And in great part due to Calvin, we know and live “other” and embrace it.
There is a beautiful scene in the Terrence Malick film Tree of Life, set in 1950s Texas, where a mother takes her young sons to town. Crossing the street behind her, the boys pass a swaggering drunken man who tips his hat to them. The brothers mimic him laughing, cutting zigzags and bumping into each other as if inebriated themselves. Another stumbling man approaches, his body queerly arched to one side, his arms drawn up to his chest like a squirrel, dragging one foot nearly on its ankle. They stare but do nothing, noting the peculiar but sad circumstance of his disability and, perchance—in their minds—noting the sorrowful state of the drunken man. Lastly, the brothers skirt past a dirty, disheveled man in shackles. Their mother lifts a drink from her thermos to his parched lips. One son asks in a whisper, perhaps to himself, can it happen to anyone?
Yes, it can. I know. It can happen to good people and bad people, to adults and children, to saints and heathens. We can all end up being singled out, gawked at, mimicked and shamed, but by those who sadly, and for whatever reason, don’t have the sublime ability to look through life’s beautiful prism and see—embrace—the poignant beauty that is “other.”
Calvin and I spent New Year's Eve in the ER. It was the first New Year's Eve in decades that I've stayed awake past midnight! Calvin and I both got some sleep, but were interrupted numerous times at ungodly hours for exams, IVs, blood draws, vital signs, a CT scan, an X-ray, and an unsuccessful attempt at getting a urine specimen. Through all of it, my ailing, tired and uncomfortable child was a superstar.
Earlier that day, we went to see the doctor because Calvin had been experiencing waves of excruciating pain—pain so bad it seemed as if he were being stabbed in the gut repeatedly. The doctor ordered a blood draw. Later that night, she called to tell us that his pancreatic marker, lipase, was three times what it should be. She advised us to go to the ER immediately for possible complications of acute pancreatitis. The blood draw at the ER, however, showed a normal lipase level, and the CT scan indicated that his pancreas looked fine. The ER doctor noted, however, that there were a handful of gallstones she said we should keep an eye on.
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.
"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.
pink dawn. stove top espresso with warm milk waiting for me just like every morning. the smell of freshly-baked cheese bread. a slice of it warm with butter. great-feeling, sub-freezing pennellville 10k. black-camo and leopard-print leggings. puffer jackets and running gloves. day-glo yellow running shoes from joanie. calm water. day eleven seizure-free for calvin. hot shower. danish coffee cake from wisconsin. a fire in the stove all day long. smiling child. funny husband. cozy home. stained-glass window. quiet streets. the structure of winter trees. moss and lichen. red berry. tufts of cat tail blowing in the wind. pumpkin and pecan pie. panoramas. old friends and pandemic ones. running for miles in the wide open. the freedom it gives me. running with smellie on the trails. seizure-free child, at least for now. candle light. lilies in a blue vase. michael's students coming over for a thanksgiving meal. herbed, spatchcocked turkey. fresh green bean casserole with fried onions. garlic mashers. honey sherry shallot carrots. sunlight through trees and old wavy-glass windows. music on a kick-ass stereo. dancing like a maniac in the kitchen (makes michael smile and laugh.) gigondas. a bit of bourbon on the rocks. wicked-smart and hilarious neighbors. gatherings. laughter. friendship. drives on the back roads. gratitude galore.