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

thanksgivings

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.

seize, grieve, repeat

The night's torrent had begun to wane. Its pummeling on our red metal roof had dissolved into a soft patter. The happy, excited voices of college partygoers passing by our house had trailed off just before two a.m. I had gotten up to use the bathroom and had checked on Calvin to make sure he was positioned well and covered. It seemed he hadn't moved for hours.

Not long after I closed my eyes again, my son's seizure scream cracked the silence. Despite the stormy weather, I hadn't really seen the seizure coming; it was day forty-five in a seizure-free stint, one of his longest in years.

After nearly two minutes, when the grand mal was over, I dripped two milliliters of my homemade THCA cannabis oil into the side of Calvin mouth in an effort to stave off a subsequent attack. Then I crawled into the small space next to my boy-man whose soft childlike cheeks are now regularly peppered with stubble. I held him close so I could monitor his breathing; SUDEP—Sudden Unexpected Death in Epilepsy—is a menace for young people like Calvin who have intractable epilepsy, and is thought to occur because of disruptions in cardiac and/or respiratory activity in the wake of grand mal seizures.

Regrettably, this morning Calvin suffered a repeat of yesterday's 2:00 a.m. seizure, but this time the extra cannabis oil I gave him did not thwart an ensuing one. I wish I had thought to give him an emergency dose of nasal Valium, but in my sleepy stupor it slipped my mind until the seizure was already over, when I was loathe to give it. But during his third grand mal in just over twenty-four hours, I gave him the nasal Valium to stop the cluster from evolving further.

Today, my sweet boy is a bit better than yesterday. I still don't know what caused the cluster after forty-five days of seizure freedom. Was it the storm and its low barometric pressure? Does he have an underlying illness? Was it the sucrulose (which I hadn't initially noticed) in the different brand of Greek yogurt I gave him? Is it that his body is habituating to the newest epilepsy medication, Xcopri? I will likely never know. I'll just sit here and hope, at least for now, that he doesn't have any more.

holding onto hope

i'm holding onto hope ...

hope that calvin can continue his seizure-free days past thirty-six. hope that somehow we can get him—once and for all—off of the bloody keppra. hope that his body will one day settle into something approaching calm. hope that he isn't feeling pain, hope that he stays well. hope that eventually, within our lifetimes, someone will find a cure. hope that at some point i don't ever again have to watch him seize.

i'm holding onto hope ...

hope that i can continue to run on the trails and roads, to feel its freedom, the sun on my face, the wind through my hair and the sound of it through the treetops. hope that i stay healthy and fit for many more years. that i remain young at heart (though that isn't really a worry.) that i remain injury free. that i can keep taking care of calvin, at least for the time being.

i'm holding onto hope ...

hope that calvin's school goes forward to be a safe and welcoming place where his typical peers continue to gain insights from his presence and energy. hope that more people in this world and nation begin to value difference and diversity. hope that young people keep learning the truth about this nation's full and true history. hope that everyone can get a bit away from their gadgets and, instead, get back to communing with nature.

i'm holding onto hope ...

hope that women won't lose the legal right to be equal citizens in this nation. that people can agree that healthcare is a goddamn human right for everyone. hope that the separation of church and state holds (at least to the extent it does.) that more and more people vote, and are not burdened by difficulties or dangers accessing the polls. that the election is free and fair. that people honor the outcome. that people stop believing the lies they are being told about a so-called stolen election. that extremists and liars lose. that violence doesn't rise up, but if it does, that it is quickly quelled. that democracy holds.

i'm holding onto hope ...

that one day leaders, and others, of this beautiful world will put aside their egos, their fetishes, their power lust, their deceit, their bombs, their guns, their crowns and swords.

hell and angels

i don't believe in religion or in its hell or angels. to me, that hell is an absurd, fantastical, primitive invention, a relic of the dark ages. but hell on earth is real. i know, because it exists in the misery of my kid, in the pain and panic attacks he has that sometimes last for hours and deprive everyone of sleep. it's in the way he thrashes, cries and writhes in bed. it's in the agony and sadness etched into his soft forehead. it's in the way that so few things help my sweet kid when he's like this. 

my perdition is in witnessing, in my helplessness and incomprehension, my inability to exactly understand the nature of his hurting, the meaning of his expressions. he has no words, only coos or hums. at hellish times, he shrieks and moans. it's this mother's agony to observe.

so, too, i feel the punishment of eighteen and a half years of "raising" an infant-toddler-teen. it's a job that doesn't come with vacations or weekends. all too often it is tedious and grueling. it requires i be on duty, or on call, around the clock every day of every month of every year. to keep him safe and warm and clothed, clean and dry and fed and loved. to keep him out of harm's way like any parent would. to comfort him when he's out of sorts. to give him medicine even when i can't know for sure his misery's source.

while running the other day, i heard a car skid to a stop. my heart skipped a beat thinking it was my kid—the rubber squealed as if it were his seizure-shriek. but it was just the sounds of the street. years ago, when we often called 911 for calvin's stubborn fits—one so long we thought his body would give out—i used to run after ambulances. while walking the dog on campus, i'd sometimes hear sirens screaming past. i feared they were headed to our house for my boy. i'd chase them till they'd turn down different streets. it was a godawful—hellish—frightening, worrying feeling.

no amount of writing can sufficiently describe how heart-wrenchingly difficult this kind of caregiving is. this witnessing of my child's suffering. the feelings of guilt rising from punishing frustrations born from lack of sleep, getting smacked by his errant fingers and fists, listening to his tiresome and irritating bleating, coping with his poopy diapers and sopping bibs, watching him repeatedly seize. the hell i feel is in the most of it. what's the worst, though, is his frequent misery. a kind of hades i really hate, and from which it seems there's no escape.

and so, no, i don't believe in god's hell or angels. but if there were angels, my precious calvin—with his impish grin, little muscles, strong embraces, smooth skin, huge eyes, cute dimples, ecstatic smile when we kiss him, his deep-down goodness and sweet disposition (when he's feeling well)—would hands down take the cake. 

anniversary

Today marks the twelfth anniversary of my first blog post. In twelve years, and over 1,747,526 hits later (no doubt some of them from bots), scores of lovely people have joined in helping to fuel my journey, recharge my battery, and validate my innermost feelings about what it is to raise a disabled child who suffers from intractable epilepsy. Those wonderful people are you:

all kinds of mothers, fathers, doctors, nurses, restaurateurs, therapists, ice cream scoopers, bloggers, children, ed-techs, in-laws, sales reps, grocery store clerks, photographers, chefs, brothers, teachers, flight attendants, runners, city councilors, dietitians, case managers, receptionists, kindred spirits, painters, octogenarians, presidents, ed-techs, bar tenders, cooks, bus drivers, radio talk show hosts, chaplains, lawyers, actors, neuro-ophthalmologists, contractors, professors, nurse practitioners, marathoners, deans, physical therapists, grandmas, grandpas, farmers, farmhands, coaches, nieces, nephews, priests, college friends and their spouses, athletes, bowl-turners, aunts, uncles, cousins, principles, headmasters, musicians, retirees, servers, brewers, hair stylists, writers,s founders, weeders, orthotists, superintendents, directors, students, ex-students, curators, sisters, poets, producers, carpenters, baristas, CNAs, actresses, technicians, former coworkers, contractors, designers, business owners, candidates, librarians, congresswomen, critics, high school buddies, neighbors, longtime friends of the family, occupational therapists, speech and language pathologists, pharmacists and their staff, hospital staff, phlebotomists, neurobiologists, film makers, celebrities, readers and kind strangers.

Thank you for reading and sharing and connecting and caring. You’ve all done something—whether unwittingly or not—to make our lives richer, more comfortable, happier, better, and for that I owe you each a debt of gratitude.

blind luck

The sound Calvin makes when he has a grand mal seizure is no sound a parent wants to hear coming from their child, nor anyone for that matter. It's blood-curdling. Sometimes it's strident, a bit like a barking dog or seal, and at others it sounds like someone being murdered. The screech that ripped me out of sleep Wednesday morning was doubly loud, long and alarming for some reason. To add insult to injury, it came on the heels of last Monday morning's grand mal.

It's a sinking feeling watching your child seize, especially when there's really not much to do save administering emergency medications, which have their own slew of troubling side effects, though luckily aren't usually necessary for Calvin since for years his seizures have stopped on their own. The clusters, however, are harder to control.

And so, to avoid subsequent seizures, when the seizure was over I incrementally syringed two milliliters of my homemade THCA cannabis oil into the pocket of Calvin's cheek and watched him drift back to sleep. Then, to monitor his breathing, I crawled in next to him—head to toe now that he's bigger—held his little foot in my hand, and my brain went to work on the days' events.

I thought about how last Tuesday authorities found the body of fourteen-year-old Theo Ferrara, the boy who went missing in the next town over nearly two weeks ago, and about whom I mentioned in my last post. His body was found in the waters of Maquoit Bay near Bunganuc Point not far from where I drive with frequency, and just downstream from where I took this photo.

Considering the lightweight clothing Theo had been wearing when he was last seen—a windbreaker, t-shirt, shorts and flip-flops—the chilly nights dipping into the forties had added to my worry. Since his disappearance, I'd been going to bed thinking of him and hoping he'd turn up safe and sound somewhere. The news is tragic, and authorities won't know the circumstances of his death for weeks.

To aggravate the tragedy of Theo's death, on social media earlier last week parents were posting pictures of their children in celebration of National Daughters and Sons days. While I love, am grateful for, and am proud of my sweet boy Calvin, the feelings the photographs evoked are bittersweet because too many of my friends' precious children—Lily, Rose, Rainier, Jennifer, Will, Tyler, August, Kelli, Martin, Mikki, Mike, Kevin, Ronan, Charlotte, Arnd, Michael, Elisif, Melissa, Matt, Cyndimae, Katie, Christina Taylor, Finnegan—left this earth far too soon. Still others may have tried to have had children but couldn't.

And so, as I lavish attention on my own child, and despite Calvin's challenges and afflictions which send me reeling and into dark places, I try not to forget our blind luck. I try to hold in my heart others who have suffered the greatest loss any parent could know. And, in moments when I complain and feel deeply the frustrations of raising my enigmatic, impossible child, I'll try my best to hold him a little more often, a little closer, and a little longer than when otherwise I might be apt to ignore.