fair day

Behind the wheel of a big red pickup, an old man of some girth in a ball cap and t-shirt, his elbow fat as a country ham resting out his window, slowed then stopped, calling out to us and nodding at our son.

"Is your boy one of . . . those?" he asked unabashedly.

I understood his tone, was pretty sure I knew where he was going.

"Yes," I said, approaching his truck.

"I've got a grandson like him. Do you know Susie?" Then, gesturing with a wave of his mitt, "She lives just down the road a bit. Her boy is like yours. I love that kid so much."

I put my hand on the man's shoulder and patted.

"They've got their ways like we don't," he continued in a husky Mainer's drawl, "They're lovely."

"Yes they are," I replied with a smile, aware of the line of cars forming behind him in the dusty parking lot.

"You all have a good day," he said as he pulled away. I wiped a tear across my lashes, my throat thickening with emotion. The Windsor Fair had welcomed us well yet another year.

Calvin did okay at the carnival, considering how manic he had been on the ride north. It was worth noting that he walked further and more willingly compared with the past two years at the same event. Still, he attracted more than his fair share of gawking children and some adults, and I thought about how people like him might've been the attraction at freak shows and carnivals in centuries past.

And though Calvin didn't regard the animals, feed any of the riotous foul, pet any bleating sheep or milk any cows, he did sit next to me in the shade on a park bench and eat the lunch I'd brought along. He didn't have any seizures that I know of—and I should note here that since starting him on THCA cannabis oil, he has had only four daytime grand mal seizures in over three years (he now has virtually all of them at or before dawn, when he is safe in bed sleeping, eliminating most of my anxiety over daytime excursions.)

The drive home included some additional mania, and I noticed his pimply nose and the rash on his face and buttocks, all signs a seizure is brewing. But he'd had a fair day overall, and so I was heartened.

Still, at five-thirty this morning—day ten since the last grand mal—the seizure hit. While Calvin convulsed, Michael kissed his face and I rubbed frankincense oil on the bottoms of his feet, put dabs of it on his big toes and under his nose. After the fit was over, I gave him his benzodiazepine—now just 1.3 mgs daily, down from a high of 35—and crawled into bed with him.

Spooning my shivering boy, I dreamed of yesterday's puffy white clouds, the roar of jet engines clawing the sky, the feel of splintering paint on Woody's front porch, the clink of ice cubes in glasses of bourbon, the smell of cotton candy, fried onions and barbecue, of straw and country sausage, and the goat-like bleats of my lovely child.

rough patch

"I've been reading your blog," friends and acquaintances often say when they run into me in town or at the fields, "Sounds like Calvin has been going through a rough patch."

Images of a bird snared in a brier patch or stranded in some parched bit of desert come to mind. No doubt they're right, yet I hesitate to mention that this rough patch Calvin has been experiencing has lasted thirteen-and-a-half years with little relief. In fact, smooth stretches in Calvin's life have mostly been the exception rather than the rule.

To be honest, however, the past six months apart from May have been somewhat harder on Calvin, what with interrupted sleep and increased seizures, which could be due to benzodiazepine withdrawal, puberty, and/or B6 toxicity and its abrupt elimination. But he's gone through spates like these before, at times needing emergency hospitalization for prolonged seizures, the worst of which lasted the good part of an hour.

In my quest to remember what my child was like before the seizures and mind-numbing drugs, I look back at pictures of him as a baby and I see what appears to be a happy boy. Michael reminds me that photographs often tell lies. Yet, I swear Calvin wasn't always so spastic, so manic, such an hyperactive, peculiar child.

I'm reminded of the Frontline episode, The Medicated Child, and the boy in it who suffers quirks and tics from years being on powerful medications meant to focus and calm him. I wonder what so many antiepileptic medications have done to Calvin's developing brain, to his behavior, his gait, his coordination, his sleep, his ability to be calm. I really have zero doubt that Calvin is the way he is not because of the seizures, but because of the side effects of the drugs. I wonder if after his last dose of benzodiazepine—which I hope might be before his birthday next February—he'll be able to eventually revert back to the child in those lovely photographs and videos of him smiling and serene; in a few of them he looks almost normal. Something tells me he's been wrecked for good.

Alas, this rough patch doesn't appear to be ending anytime soon. And so all I can do is my best to make it smooth as possible for my kid and for my family and—in-between my own bouts of madness—do what I can to ease this bumpy ride, keeping my sights on a soft landing, like a water bird on a pond.

Photo by Michael Kolster

impressions

ominous sonograms. emergency surgery. hospitals. neurologists. phlebotomists. neuro-opthalmologist. fleeting hopes. unknowns. fleeting joys. fleeting dreams. omens. nightmares days. pain. loss. grief. seizures. eegs. trilpetal. failed drugs. paradoxical response. keppra. depakote. missed milestones. lamictal. zonegran. clonazepam. ridiculous protocol. 911 calls. ambulances. imbalance. stupor. dietary rigor. weight gain. withdrawal. clobazam. banzel. keppra again. malaise. mania. anorexia. lethargy. insomnia. zombie boy. wild child. sleepless nights. poking eyes. cannabis. optimism. standing tall. calm. still wanting it all.

white blight

For the past several years I have visited my son's school to tell his classmates a little bit about him and his epilepsy and explain why he can't talk, doesn't walk well, still wears diapers and behaves so unusually. Then, I open it up for questions, offering to answer absolutely anything the students might want to ask. At the end of each conversation I encourage the kids to be kind to Calvin and others like him. I tell them that Calvin is the best person I know because he doesn't have a mean bone in his body and, most of all, he doesn't discriminate. Then I broaden my appeal, asking the students to show the same kindness to others who may look, sound, dress, speak, behave, dwell or worship differently from themselves.

"Because inside we all have the same heart," I tell them, reminding them that none of us were born knowing hate. I make sure to look into each and every one of their solemn faces so they know I am talking to them.

When I first heard of the mob of White supremacists descending upon Charlottesville brandishing torches, some wearing paramilitary garb and carrying weapons to protest the removal of a confederate icon, I cringed. I read that one of the White supremacists deliberately slammed into a crowd of counter protesters with his car, killing a young woman and injuring scores of others. I read accounts of black men being beaten and bloodied with poles, of anti-fascists being pepper sprayed, and saw a woman being sucker punched in the crowd. The gang was chanting, "white lives matter," and "we will not be replaced," and "blood and soil!" The latter made me marvel at their blatant ignorance and the irony of their words considering this nation's soil was never theirs; men like them slaughtered this land's native people by the millions, raped their women and torched their villages, wrongfully claiming the blood-soaked and sacred soil as their own.

Inevitably, when I hear of these kinds of atrocities wreaked by the least oppressed demographic in the country—white men (and by the way, some of my best friends are white men)—I think about how the Nazi's, prior to coming for the Jews, systematically murdered people like my beloved son who were deemed a stain on the Aryan race. I also think about some of the folks I've gotten into debates with about White privilege. Over and over, I hear the same flabby platitudes and baseless bootstrap theories—that they've worked their asses off for everything they've achieved. It's not that they haven't worked hard, but their success wasn't achieved in a vacuum. Some can't seem to admit that the color of their skin has given them every advantage in the playbook: the benefits of White-sounding names on resumes; the benefit of not being discriminated against by teachers, employers, loan officers and landlords; the benefit of not being pulled over by cops just because of the color of their skin; the benefit of not being suspected of breaking into their own homes; the benefit of not being seen as a threat and a menace, unjustly maligned by society. While I can't know why they hate—and perhaps they don't even know—I deeply lament their willful ignorance and inability to comprehend what it means to be truly oppressed, and I resent their militant tactics, particularly because they're not oppressed.

Photos of the mob in Charlottesville reveal angry White men, some ratty old-timers hiding behind masks and shields and guns, others who look like your average frat boy, each one essentially threatening that their privileges—the same ones that most of them likely deny enjoying—best not be taken away. It would seem that they fear being treated like the oppressed masses—African Americans, Japanese Americans, Native Americans, immigrants, Latinos, non-Christians, LGBTQ people, women and other minorities—have been treated for centuries in this land of White male politicians and policies, banking industry, criminal "justice" system, law enforcement, White prosecutors and jurors and wardens. Had these angry thugs carrying torches and semiautomatic weapons provoking peaceful protesters in Charlottesville been Black? We can be sure things would have turned out differently. In this nation, White terrorists carrying weapons—yes, this is what terrorism can look like—strut our streets with impunity.

And, yes, The Ass in the Oval Office has fueled their flames and incited violence time and again.

No doubt in my mind, the weakest in this country are White supremacists. Insecure and small-minded bullies, they scapegoat others in a feeble effort to feel better about themselves. They are so incurious as to fear other without first knowing what other is, and to baselessly discriminate, something that my sweet, innocent son Calvin doesn't do, and wouldn't if he could utter a word.

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open invitation

I'm bracing myself for a three-and-a-half-week stint taking care of Calvin mostly by myself. Today is his last day of summer school which, though it's a measly three-hour day, four-day week, one-month session, is something that helps sustain my relative sanity in that it gives me time to walk the dog, tend to the garden and write a little bit before my high-maintenance child comes home on the bus at 11:30 a.m.

Michael is working diligently on photo submissions and on his next publication (he is the most prolific artist I know), and is already busy with administrative duties as head of the art department at the college. Even so, he helps me in the early mornings and evenings, and cooks all of our dinners. But the days are long, monotonous, not altogether fulfilling, and perhaps even a little lonely. I'll do my best to take Calvin places he knows like the grocer, the health food store, the donut shop, the coffee shop and, now, the gelato store, which pretty much define the physical parameters of my entire world. I wish he enjoyed and tolerated new places more than he does and would walk further without balking and dropping down. I've got to continue pushing his boundaries . . . and mine; we've got to grow.

But in case we are housebound due to seizures and/or malaise, this is an open invitation for friends to drop in for a cup of strong coffee or an early-evening cocktail and/or to join me and Calvin (in his stroller) while I walk the dog. I make a mean cup o' joe, and the garden—though the lawn looks and feels like straw—is lovely this time of year, especially in the morning and early evening around five p.m.

Please come on by.

Photo by Michael Kolster

(ship)wrecked

When I spend long spates of entire days taking care of my thirteen-year-old son Calvin, I'm apt to become testy at times. Monotonous as his care is, my patience sometimes wears thin enduring his drool, his shit, his manic fits, his restlessness, his incessant sun-staring, his sticky hands tearing out my thinning hair, his penchant for putting his fingers all over my face and into my eyes and mouth, his desire to butt me when he presumably doesn't feel well, his wont to drop down refusing to walk when and where I need him to go.

Add to those hourly irritants stepping in Nellie's diarrhea then nearly missing her pile of barf in the yard on a morning after having had little to no sleep because of Calvin's grand mal. I feel wrecked . . . and trapped and going nowhere fast and neglected and bored and exhausted and dirty and resentful of what often times feels like an utter waste of two lives.

And then I watch this gripping op-doc (also shown below) which brings me to tears, slaps my ungratefulness in the face, and makes me wonder why we all don't behave like the benevolent man at the helm, why we don't embrace all humanity in its gorgeous and various forms.

I finish watching the short video, wipe my eyes and breathe deep, having been snapped out of my pitiful brooding. Though it's hot as blazes, I step outside and manage to tug Calvin along to Woody's house three doors down. Calvin rings Woody's doorbell (as always with much assistance), then sits in Woody's rocker and eats the usual piece of chocolate which we regularly pilfer from his candy jar. After a typical three-minute visit, Calvin insists on making his customary stop at Woody's garage to slap and bite its vinyl siding in the same, drool-stained spot he has for years.

As I tug Calvin back home, I hear a catbird singing its heart out, and see all sorts of other birds bobbing and flitting by. I get a glimpse of a salty, floppy-eared black lab poking its muzzle out the window of a passing car. I hear the unmistakable racket of polyurethane wheels on asphalt and turn to see a handsome, college-age skateboarder (I love skateboarders) in a floppy hat, rolled-up summer khakis, white tank and sneakers, and a billowing shirt sail by flashing me and Calvin a Pepsodent smile. Once home, our friends' daughter Zoe comes by to walk Nellie, just as her brother Felix, who is six weeks younger than Calvin, had done the day before. Later, I see sweet Nellie—the best dog in the world who we can afford to feed and keep and who brings us immeasurable love and levity—eating her own barf, and at first I get angry. But then I think about that video—those suffering men, women and children who've been pushed to the very brink of existence and, having left behind virtually everything they know and own to escape war or rape or famine or massacre, risking their lives and the lives of their children to find a better way—and I have to laugh at my pathetic self and my handsome wreck of a child when I remember how extraordinarily lucky we are, and that compared to most, we are swimming in the calmest of seas.