riches

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 hot glögg, which 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

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.

lost boys

I was going to write about why I haven't been writing much (instead, busy with running, some autumn gardening, taking care of a recently-sick Calvin, and doing online modules to complete my DSP (direct support provider) "training" so that I can begin being paid a little for taking care of Calvin. I was going to write about the fact that, on a moderate dose (100 mgs) of Calvin's newest drug, Xcopri (cenobamate), he's been going longer between seizures (thus having fewer), and that he didn't have a fever or a febrile seizure after last Friday's Covid booster. I was going to mention that he hasn't had any focal seizures since February, and that, overall, his behavior is better.

I was going to write about our near-perfect trip to the Cumberland County Fair yesterday where, under hazy, lavender-ish skies, Calvin did some amazing, albeit brief, stints walking by himself (too good to be true? we wondered aloud) down and back through a barn of draft horses and even a bit further. I was going to write about how straight and stable he sat at a red picnic table drinking from his sippy cup, that he enjoyed bites of warm, cinnamon-sugar donut, that all day long he signed "eat" very well, putting his finger to his mouth when he wanted more.

But, halfway through our time at the fair, when the crowds began to gather choking the pathways, and the midway rides ignited their noisy motors, and the hot sun began to filter through a bit too strong, Calvin's relative well-being seemed to go south. His intermittent walking deteriorated, so we put him back into his stroller. His skin felt hot. His face went pale. He began to perseverate, elbows crooked and waving, knitting his fingers. On the drive home, he batted and grabbed for me incessantly as if to be saved from something.

Then last night came the perfect storm—the new moon, a drop in the barometric pressure, perhaps a semi-latent affect from Friday's Covid booster, the sky opening up to unleash one of the hardest downpours I've heard since moving here—and at 2:45 this morning, Calvin had a grand mal seizure. It had been fifteen days since the last one. This time, when the fit was over, I gave Calvin twice as much of my homemade THCA cannabis oil as I usually do, hoping to prevent a second one from striking like they often do. Thankfully, it seemed to work.

As I laid in bed next to my boy in the pitch black of his room, I thought about the day's events and the looks Calvin got from strangers—some kind, others curious or suspicious, perhaps even put-off. I thought about the rides I would've liked to have taken him on, the animals I wish I knew if he saw and wish he could enjoy petting, the contests I wish he could've entered if he wanted to, the fact that, in ways, Michael and I wish we could've been at the fair without him.

As Calvin slept, at times arching, I thought about our ride home through parts of Freeport, Maine, where good neighbors and authorities were and are actively searching for a skinny fourteen-year-old boy named Theo who went missing four days ago wearing shorts and flip flops as nights dip into the forties and fifties. I wondered what happened to him. Was he snatched up by a nefarious actor? Did he fall into a hole or into frigid waters? Was he bullied into a state of anxiety, depression or some sort of submission? Did he end his own life? Was he trying to escape something or someone?

Then, I thought about the bluegrass concert given at my friends' gorgeous farm last Friday night in memory of their young and precious son, Finnegan, who died in a kayaking accident last November. So many amazing and loving people gathered together to make food, music, and memories in honor of a beautiful boy—at nearly 24, a young man, really—who was lost far too soon. I felt grateful to have been able to be there, at least long enough to give and get some hugs, to visit with beloveds a bit, and to remember my young friend, Finnegan, for the incredible human being he was.

In thinking about Theo and Finnegan, I considered the grief I feel over my own lost boy. I often wonder what would have become of Calvin—or what he would have become—if he hadn't been born missing most of the white matter in his brain. I mourn the loss of a boy who is flesh and blood sitting right in front of me—the loss of his artistic, athletic, academic, physical, philosophical, humanitarian potential. The loss of seeing him make friends and meet new people, and of us becoming their close friends, too. The loss of seeing him fall in love. The loss of the potential of having a growing relationship with our adult child. The loss of possibly having a grandchild or two to dote on.

Then, I think about my blog and memoir in progress and how I'd never have started writing them if not for my boy. Perhaps I wouldn't be quite so charmed by gardening if I didn't feel the need to shape nature since I can't control my son's regrettable disabilities and miserable afflictions. Maybe I'd never have started running (again) if not for need of an escape from a hard and restricted life of mothering an impossible infant-toddler-teen. Maybe I'd never have embarked on my pandemic back roads travels, which have bore new friendships, sparked a love for taking copious panoramic photographs, caused me to reflect so deeply on life and the mundane. These amazing endeavors I'd likely never have chanced upon if not for Calvin.

And though it's no consolation, my lost boy and what he has brought to me and to others is so worthwhile, and worth pondering. 

universal beauty, unconditional love

If my nonverbal, incontinent, legally blind, unconditionally-loving son Calvin has (unwittingly) taught me anything, it is to be grateful. That might seem counterintuitive considering our sorry situation, but I've come to understand that mindfulness and gratitude are two practices that help get me through the bruising parenting of a cognitively and physically disabled child who has a chronic condition as relentless and unforgiving as epilepsy. Gratitude and mindfulness help keep me grounded while at the same time distract me from getting stuck on the troubling aspects of life concerning my son.

Last Saturday night was a rough one for us. After a day of snotty-nosed sneezing, Calvin developed a cough and a fever of 102.6 degrees. Several hours later, I was amazed that the stubborn fever hadn't managed to break his twenty-seven-day seizure-free streak. However, despite alternate doses of acetaminophen and ibuprofen, at 1:30 in the morning a grand mal finally broke through, and a second one regrettably followed a few hours later. The kid is still sick.

Nevertheless, on Sunday, as on most days, I found things to be grateful for: Calvin didn't have a third seizure; he felt well enough to be interested in a car ride; though he didn't eat, he took in fluids; I still managed to get outside by myself to run a few miles. Practicing gratitude, however, doesn't mean I don't also lament Calvin's and our impossibly difficult and relentless situation.

Throughout the weekend, I thought about a social media post I'd seen in which its author expressed her belief in a heaven for the followers of Jesus. The specificity of her remark made me bristle a bit, understanding well that many if not most Christians are convinced that nonbelievers—no matter how virtuous—will be tormented in Hell for eternity; I've had friends and acquaintances tell me that's where I'm headed simply because I'm not Christian. Mostly, I laugh off what I regard as an absurd, fantastical, primitive invention. I went on to consider Calvin's innocent obliviousness to Jesus. I thought, too, about my many salt-of-the-earth Atheist, Jewish and Muslim friends who, though they know who Jesus was, do not claim him as their lord and savior. If there is a god, is "He" so conceited and merciless as to banish decent people to eternal damnation for their so-called indiscretion? Are we/they not God's beloved children, too? Shouldn't virtue be valued over appeasement?

I went on to recall an interview I did with a student of journalism who produced an audio profile of me during the height of the pandemic. She made a gorgeous, seven-minute piece about my life with Calvin. Her depiction is rich, though doesn't include my recorded musings on religion, Christianity, specifically. I surprised even myself when I told her that many aspects of Christianity offend me. I had never thought of it in those stark of terms before, but as I described sweet Calvin's miseries and struggles—his malformed brain, inability to adequately express his wants and needs, his helplessness and vulnerability, his seizures, the heinous transient and permanent side effects of epilepsy drugs and their withdrawal—my position crystallized. I lamented to her the "everything happens for a reason" and "God doesn't give you more than you can handle" platitudes that come my way all too often from well-meaning Christians when they learn about Calvin. To the former, I usually respond by saying I don't believe it for a second; to the latter, I counter by asking why, then, do people kill themselves?

Though raised Catholic, and despite the fact I'm fond of the presumed teachings of Jesus, I lost my religion ages ago, having first begun to doubt it with the tragic swimming pool accident of a best friend's two-year-old sister when I was fourteen. As the years have passed, I've become more awake to Christianity's patriarchy, sanctimony, power-lust, enrichment, racist and bigoted history, and the hypocrisy of some of its most ardent leaders and disciples, which doesn't negate the fact that, like all people, most Christians are good.

But, there is something else that troubles me: religion's depiction of the creator (assuming there is one) of our mind-blowingly vast and expanding universe as anthropomorphized, obstinate, immutable, callous, conceited, judgemental and unforgiving—a being, I'd argue, that seems made in man's image rather than the other way around. What exactly would be the motive for an allegedly omnipotent, merciful god to let "His" children suffer, to test them so harshly, setting up some of them—like Calvin and others who through no fault of their own are isolated and ignorant of Jesus—for certain failure? And if we puny humans are capable of forgiving each other's mistakes, shortcomings and most heinous offenses, why isn't God? What is the point of a fealty experiment, anyway? Shouldn't virtue be enough?

Knowing with the utmost conviction the answers to my own questions, I return to musing on gratitude—for the green canopy of trees, for a healthy body able to run free for miles by myself, for an adorable, affectionate child, a husband, friends and family who love me, for kind strangers and shearling slippers and smoked-chicken enchiladas and black-eyed susans and Nan's dahlias and lemon bars and Smellie dogs and cozy homes and blue ocean vistas and moody skies and screen porches and chilly mornings and warm breezes in the afternoon. Finally, I land again on imagining that wherever, whatever or whomever these gifts come from must unquestionably be free of judgement, an expansive and evolving universal beauty. And if perhaps it's a celestial energy or being, I imagine it to be no less than my pure son Calvin—a force of genuine and infinite acceptance and unconditional love.

stronger?

It has been awhile since I've felt as bad—cranky, depressed, hopeless—as I did on Friday. Maybe it was because I didn't run that morning. Perhaps it was the new moon and/or the storm that was approaching. Most likely, it was the fitful sleep I'd had adding to years of sleep deprivation, the stress of this damn prolonged pandemic, managing my child's chronic condition. Definitely, it was days of taking care of Calvin with no help since last Monday while Michael was/is hard at work. No doubt it was day after day of waking at five, giving meds, changing wet diapers and onsies and bed pads and comforters, my hyperactive and restless child so insistent on me, wiping up the various liquids he drools onto every surface, changing his clothes, putting on and taking off his socks and shoes, clipping his fingernails and toenails, cleaning his ears, brushing his teeth, washing his hair, hoisting him out of the tub, drying him off, leading him to his room, helping him up onto the changing table, giving him countless suppositories, sitting him on the toilet on and off sometimes for over an hour waiting for him to empty his bowels, wiping his butt, walking him around the house and yard, catching him if he starts to fall, watching him seize, getting poked in the eye by errant fists and fingers, being on duty twenty-four-seven, chopping up his food, feeding him all day long in fits and starts, burping him on my knee like a baby, listening to him grouse, repositioning him and covering him umpteen times a night. As I often think and as someone said to me yesterday, our situation with Calvin is impossible. I'm surprised I don't lose my shit more often. I owe that in part to my years of hardcore, painful swimming which nearly broke me at times, but never did. As one of my favorite funny memes says, I'm tired of shit not killing me and only making me stronger.

But when I break down and sob, often my husband is there to receive me and tell me how hard what I do is—the day in and day out of it with little to no help, especially these last years during the pandemic. And then, as I am wont to do, I turn to gratitude to soothe and console me, to help me look up. I ponder the multitude of fortunes I'm graced with, and then I put them down in words so I don't forget:

twilight. screen porch eating. strings of tiny orangey lights. crickets in the grass and bats flying circles in the backyard sky. crickets and birds playing in the background of a song playing loud on a kick-ass stereo. besties and other visitors, impromptu or otherwise. evening strolls through the organic garden out back, drinks in hand. celebrations. togetherness. loving and relating to other people's extraordinary, funny, smart, adorable children. laughter. clowning around. smoke from a waning fire wafting into the house. lovely people who love me without a doubt. cool-to-the-touch leather sofa on a hot, humid night. smellie, lying prone at the opening of the french doors. piano. vocals. guitar. violin. ear-to-ear smiles. feeling myself. being myself. hugs that are like mini massages. realness. dissolving anxiety. pizza in a box. calvin when he's happy, content and calm.

and:

frosty mornings. back road travels. long winding roads with ocean vistas. dense forests and winding trails. windows rolled down letting in the sweet aromas of fresh-cut hay, clover, wild aster. vast fields of corn. bales of hay dotting the hillsides like gnomes. panoramic landscapes of nearly any kind. canada geese. blue herons. goldfinches. catbirds. gnarly trees adorned with peaches and apples. meadows wild as i'd like to be, if only. echinacea. phlox. butterflies and dragonflies and hummingbird moths. the act of cutting the lawn.

and:

making and baking. ice cream cakes. lemon bars. chocolate chip cookies. caramel chocolate oat bars. carrot cake. people who love my gifted sweets. sharp-witted friends and neighbors who get me and with whom i can shoot the shit. beloveds who can cry on my shoulder. others whom i can tell anything for keeps.

and:

running easy. running medium. running with everything i've got for a spell. feeling young(er) and strong. acting like my kid self. dancing in the middle of the kitchen. signing out loud.

And then things feel better, at least for awhile. At least until the next morning at five when I wake to my Calvin and all the impossibilities that he has in store for me, which people not in situations like mine like to say makes me stronger but doesn't kill me.

2017 same old same old

running like the wind

While walking Smellie in the sweltering heat of Saturday evening, I passed the home of some friends who were in their backyard barbecuing. I heard the happy chatter of the couple with at least one of their children and perhaps one or two friends. The banter was uplifting and made me smile despite more than a tinge of sadness realizing in real time that Michael and I never have, never do, and never will have that experience with our son since he can't talk or engage with others in any kind of "normal" fashion. In fact—without exaggerating—I can probably count on ten fingers how many times Calvin has eaten a meal with us at the table. Unless friends come over, Michael and I always dine by ourselves as if empty nesters which, despite sitting constant vigil beside the baby monitor, might seem like a major bonus but in the bigger picture is a colossal loss.

Earlier in the day, I had run the Beach to Beacon 10K with about 7,000 other runners. I carpooled to the event with a neighbors' daughter, Clare, who is sweet as can be and is a serious runner. She picked up my bib and event swag for me the night before, and helped me navigate the event, which was my first-ever bona fide road race. Though it was 75 degrees with 85% humidity when the race began at 8:00 a.m., it was fun! Just before the race began I was able to hug my dear friend, Olympic Marathon Gold Medalist Joanie Benoit Samuelson, the event's founder, and she cautioned us to "please stay safe" in the heat. My goal was to finish without walking and to average a pace between 9:30 and 9:45 per mile. I came in a hair over that, which was satisfying considering the heat and the fact I had trained in earnest for just over two months. It feels good to finally be in the initial stages of getting back to my former athletic self, the one I pretty much abandoned when Calvin was born. Clare, by the way, placed fourth in the field of non-professional women with a pace of 5:59 per mile! Smokin'!

While among the stream of runners, as I smiled at the blaring, running-themed front-yard music, waved at the folks in fold-out chairs cheering and ringing cow bells, high-fived and fist-bumped the little tykes standing at the edges of yards cheering us on, I thought about what some of my friends had said to me before my race.

Just weeks prior to the race, when I was worried I hadn't trained enough distance, Joanie reassured me in a text:

"The crowds and runners will carry you in much the same way that you have carried Calvin."

The day before the race she added:

"Run like the wind!"

Her words gave me tears and chills, and I took them to heart. Other accomplished runner friends, my husband, and sibling athletes gave me advice about not overdoing it in my training, not going out too fast (I knew this from distance swimming), taking smaller strides on the hills (thanks Clare!), what to wear and what to eat and drink pre-race.

During the race, I concentrated on keeping my head up. I noted the glorious feel of the sun and wind and shade, the scenery, the tempo of my breathing. I focused on not scuffing my feet on the pavement lest I impede my own progress. And then, halfway in, I did think about Calvin and about carrying him all these years. I looked around at the close crowd of runners buoying me as if I were floating down a river out to sea. I thought about the pain of the endeavor and realized it was nothing compared to what my son endures when he seizes or suffers miserable drug side effects, or the agony he faced when he broke his hip at school. Having put it all in perspective, I was able to then forget about my little ball and chain for the rest of the race, because though I wanted to honor Calvin by doing something he might have been good at, I want running to be mine. I want at least one aspect of myself to be, for all intents and purposes, independent of Calvin since most of my life is Calvin-centric in a way altogether different from parents of neurotypical children—which is to say that my infant-toddler-teen will never grow up. I may forever be on guard, changing diapers and spoon-feeding, to say the least. And though I know parenting "ordinary" children comes with its own serious challenges, I will always lament never being able to experience the joys of things like shooting the shit with Calvin and his friends at backyard barbecues.

As I come partway off of the runner's high that I got during and after Saturday's race, and as I sit here at the top of the stairs mere feet from where Calvin is splashing in the bathtub, I realize that running—the time and space when and where I can drift and dream—is mine. 

While editing this, I recalled a post I wrote over a year ago about a winning marathoner I passed often during my pandemic back-road drives with Calvin, and with whom I've since become casual friends. In the post, I wondered about his reasons for running, whether he had suffered losses, whether there was anything that grieved him, whether he might be running to escape a hardship. But as I type, I realize my ponderings were and are mere projections—a commentary on my own situation and hardships. I also realize that running for me isn't just about escaping all-things-Calvin. It's also an attempt to ground a self that is often sent emotionally reeling by the intense, frustrating and often sorrowful caring for my child and his chronic condition, and it's an effort to get reacquainted with my true, healthier, competitive and independent self.

And as I relive the Beach to Beacon 10K in my mind, the thing I remember most is not the pain, not the heat, not the hills, but the glorious feeling of running free like the wind.

Me and Clare

to love life

We sat in the closeness of the sticky mid-morning heat, our bare arms and thighs touching. The rickety bench Woody gave me, one that dropped another screw recently, held us even as it swayed under our weight. I wrapped my hand around hers and kissed her cheek. We drank little rivers—she a sparkling citrus-scented water from a can, and I tap water held in a heavy green glass. We listened to a goldfinch sing as the wind swept through the trees. It felt as if we were the only ones in the world, and tears of sorrow came to us both as we contemplated life's tragedies.

During our walk earlier, she and I talked of mosquito bites, politics, running races, friendships, gardens, daughters, sons. Something flew up the open leg of her shorts and stung her repeatedly. I peeked into the back of her waistband and a bee—or was it a wasp?—flew out. She bent and plucked flat leaves of plantain, put them in her mouth, chewed them into a mash and applied tiny wads to the stings as a medicinal salve meant to draw the poison out.

"Everything we need is here for us," she said, meaning that nature is the original balm, then adding that we've just forgotten how to use it. I thought of Calvin's cannabis oil and how well it seems to help quell at least some of his seizures.

On our walk home, we stopped to cut—with permission—bunches of nodding sunflowers from our friends' backyard. Some of the smaller ones, which were still closed tightly like little fists as if reluctant to open to today's world, reminded me of my newly-born, four-pound, six-week preemie's apple-sized head and cinched brow. What a difficult yet extraordinary road it has been since then.

Later, when early evening came around and as I washed up dishes listening to my Calvin moan and rustle in his bed upstairs, I was again on the verge of weeping. My son is so often out of sorts or miserable, suffering from one thing or another inevitably brought on by seizures and/or their drug treatment. Though it had only been five days since his last grand mal, I could sense one coming by his bad balance, stubbornness, intensity, neediness, sour breath, eye poking, fingers in his mouth and mine, the new moon on the rise. I thought again about my earlier conversation with my friend. While strolling along a wooded path we had discussed abortion and the recent Supreme Court's abysmal decision to reverse Roe. I told her that, had I known for certain early on in my pregnancy that Calvin would be born missing most of the white matter in his brain which would cause him to be legally blind, uncoordinated, nonverbal, incontinent, cognitively impaired and—worst of all—be pummeled by thousands of uncontrollable seizures, I might have chosen to end the pregnancy to spare his suffering. To say that life for him is limited and presents major daily challenges, pain and miseries would be a gross understatement. Lamentably, there is so very little that Calvin seems to enjoy, mostly because he's been ruined by the drugs which cause him, at the very least, to be impossibly restless, making it harder, too, for me to live the life I want to live.

Just before my husband arrived home for the evening, I sat near the open French doors which look out onto the garden. There, while I reflected on my day and wrote this post, I came across this poem by Ellen Bass:

The Thing Is

to love life, to love it even

when you have no stomach for it

and everything you’ve held dear

crumbles like burnt paper in your hands,

your throat filled with the silt of it.

When grief sits with you, its tropical heat

thickening the air, heavy as water

more fit for gills than lungs;

when grief weights you down like your own flesh

only more of it, an obesity of grief,

you think, How can a body withstand this?

Then you hold life like a face

between your palms, a plain face,

no charming smile, no violet eyes,

and you say, yes, I will take you

I will love you, again.

    It struck me that I'd come across a poem so fitting for me, for my life with Calvin, and for the day I had just lived. 

    

    Just as Michael and I were sitting down for another sublime dinner in the screen porch, I heard Calvin make a strange noise. In that instant, I thought again about grief—ours, his, my friend's, everyone's—as I bounded up the stairs to find my sweet, pure, innocent beloved son—the boy who rocks my world in the most terrible, lovely, heavy (an obesity of grief) and amazing ways—as he was seizing again. I stroked his thigh and Michael embraced him and kissed his face. We've done the same perhaps thousands of times before and will very likely do the same a thousand times more, because Calvin is our precious son, and because it is our life, and in most ways we love it, and what else is there?

 

little enigma

I know it's been awhile since I've written. Calvin has had a bit of a hard time lately due to who knows exactly what since he can't tell us—it is always a mystery—but probably some combination of an increase in his newest epilepsy drug, Xcopri, and a recent decrease in his older epilepsy drug, Keppra. My guess is he is experiencing some withdrawal seizures and symptoms, and my bet is that the Xcopri and my homemade THCA cannabis oil is helping to quell some of them.

Suffice to say, I haven't had the wherewithal or the headspace to write. Instead, I've been training for a 10K running race called Beach to Beacon, which happens two weeks from today (I've never done a road race) and I've been taking loads of photographs of trees and flowers and water and my little enigma this past year, which I'll leave here for you to consider. Click on any of them to enlarge.

I hope, dear Reader, that your summer is going well as can be and that you're getting out and about. As for me, I'm enjoying my car rides with Calvin, and my runs and walks on the back roads and trails with or without Smellie, plus a bit of gardening, small and infrequent gatherings with friends, good movies, eating Michael's delicious meals in the screen porch, and this sanctuary of ours. And of course, I continue to live vicariously through others, perhaps even through you.

like no other

Like wax off of a candle, the days drip, drip, drip. In profound ways, each one is nearly identical to the last and will be very much like the one after. Events beyond the mundane rarely happen. This trend has lasted for nearly two decades and will likely continue for at least as long. I'm not completely sure how I've been able to or will deal with the monotony of it all.

The only real change is that my boy is older and bigger. And yet, at eighteen, every day I still have to spoon food into his mouth. Change his diapers. Give him his medicines. Bathe him. Dress him. Walk him around. Get him to poop. Wipe him up. Put him to bed. Listen for him in the night. I must watch him knit his fingers, poke his eye, stare at the sun, suffer miserable side effects and seize. I have to listen to him moan and grouse and screech and feel him grab and scratch at me. Now and then my patience thins, and when Calvin stretches it to its limits, I become ugly both inside and out. Perhaps you know what I'm talking about.

Monday was one of those days. Though the weather was stellar for riding bikes, boating, fishing, hiking, swimming or going to a park, I was stuck with an out-of-sorts son making circles inside the house, in the yard, in the car. Despite the Independence Day holiday, Michael was off taking pictures, because what is there to do that is any fun for us as a family? It seems we've tried it all before and have met mostly with dismay and frustration. With Calvin in tow, beaches, restaurants, cafes and strolls are all virtually impossible. Adventures of any kind are a major undertaking and often end in disappointment since our son is incapable of sitting still or attending to any activity or subject. I wish that were hyperbole.

And so, again, I sat at home feeling sorry for myself. Perturbed, I pined for an escape—San Francisco, Seattle, New York, Paris, Lisbon, Rome. Places in which I used to live and those I've visited and roamed.

Monday morning, Calvin and I went on our daily drive—a kind of respite for me even though I'm not alone. He bitched the entire time like he used to all too often. On our way home, we drove past a friend's house. She and another gal were outside soaking in the gorgeousness of her perennial garden, lounging in the shade draped in a couple of butterfly chairs. Their sun hats seemed to float over the day lilies beginning to bloom. I felt a pang of jealousy. In waking hours, Michael and I can't take our eyes off of Calvin. We must take turns watching him, staying within arm's reach so he doesn't fall. Can't leave him unattended for a second unless he is secured in his safety bed, and even then we have to listen for him over the baby monitor. There's no escaping him. Can't find real relaxation and solitude. Can't send him anywhere on his own. In that way, we don't have much freedom unless he's with his pal Mary or at school.

In the late afternoon when Michael got home, we all drove to Pennellville to pick up our friends' farm share since they're out of town. Afterward, we drove out to nearby Simpson's Point which is a regular stop on my morning drives with Calvin. We pulled into the turn-around, parked and watched the bathers from the car. Michael spotted a friend and went to say hello. I got out of the car to take a few nearby photos while Calvin sat in the back seat gnawing his toys. Our friend's wife emerged from the waters and came to visit with me. So that I could keep an eye on Calvin, we stood next to the car catching up about our boys, our gardens, our various goings-on. Eventually, I openly lamented the monotony of my days with Calvin. Then, in what I believe was a loving and concerned attempt to level the playing field, she told me that the sameness of days is something everyone experiences, that it was that way for her at work, too. I told her, with gratitude, that I hadn't exactly thought of it in those terms before.

But late that night, after I had gotten out of bed for the third time to lay my restless boy back down, cover him up and to wrestle his bed pad which had gotten untucked and buckled under him, I had a thought: the monotony of my days is wholly different than what my friend was talking about. This was an eighty-plus degree holiday weekend, a day made for barbecues and picnics, watching parades and fireworks or taking a dip in the cove. Michael, Calvin and I were there in our street clothes. We had simply been on an errand and had taken a detour. We were not sunbathers, swimmers or waders. Our teenager was not frolicking in the water with his buddies. We were not there reclined in fold-out chairs reading our favorite novels or sipping iced drinks from a thermos. We were not resting under wide-brim hats in the shade. Those are things we never do, don't have the luxury of doing with Calvin because he can't sit still. We were doing what we always do when he's around, which is practically nothing beyond driving the back roads. And yet, we were grateful for our astoundingly serendipitous "adventure," and to get a slice or scent or taste of what others were able to immerse themselves in, some of them perhaps for hours.

After a short visit (we had to get home for Calvin's evening seizure medicines and early bedtime, otherwise we would have lingered) we said our so-longs to our friends. But before we drove off, I decided I should at least test the waters. I padded down to the boat launch past folks in bikinis and tanks, trunks and sunglasses. Before we had embarked, by a streak of luck I had slipped into my flip-flops for the first time this summer and had rolled my jeans up. I stood at the water's edge and let the gentle waves lap over my feet and ankles. It felt refreshingly cool, though not too cold for a swim. There on the point, I closed my eyes for a moment as if no one were around. Tipping my head back, I felt the sun and the salty wind kiss my face and neck as if a lover. For a split second, I let the elements take me somewhere far away and exotic.

And as I finish writing this, I realize Monday had turned out to be a day like no other.

Simpson's Point

intimate decisions (american dystopia)

I've been pregnant twice. My sweet, pure, legally blind, nonverbal, incontinent, autistic, cognitively impaired, seizure-plagued son, Calvin, is my only child. At least three of my friends who were in committed relationships when their contraception failed were able to get safe, legal abortions after discussing the intimate decision with their partners. One of them was the mother of two, another went on to have two children, and the third remains child free. I'm not pro-abortion and I've never had one, but after suffering the miscarriage, I underwent a D and C. My only worry was that, because of my age, I might not get pregnant again. That worry was shortly replaced by a wholly different kind of worry: Calvin, my little apogee and abyss.

The recent Supreme Court reversal of Roe vs. Wade, which has eliminated Americans' constitutional right to abortion—aka body autonomy and reproductive freedom—is as astonishing as it disturbing. It serves as evidence of the Conservative majority's callousness, ignorance, and chauvinism.

Callousness—for the blatant disregard of the physical and emotional harm millions of girls, women and their families will suffer when they are forced to carry unplanned, unwanted or medically problematic pregnancies to term. Women and girls will die without access to safe abortion. They'll die in childbirth itself. When they have dangerous complications from miscarriages and stillbirths, they'll die foregoing access to medical care for fear they'll be suspected of attempting to abort in states that have banned the practice. Black girls and women, whose rates of maternal death are three to four times higher than whites, will disproportionately face the most dangers, as will poor people and other people of color. How are these circumstances not examples of depriving women and girls of their constitutional right to pursue life, liberty and happiness? Despite these lethal risks, anti-abortion advocates claim this decision is somehow pro-life. Moreover, anti-abortion advocates tend to oppose measures known to greatly reduce abortions such as easy access to contraception and comprehensive sex education, and social programs such as universal healthcare, paid family leave, childcare, universal pre-k and other programs aimed to help mothers and fathers avoid the financial and logistical hardship of raising children. It sickens and pains me to see and hear them celebrating this decision, this most recent version of American dystopia.

Willful ignorance—for the apparent refusal to seriously consider and truly understand—or care about—the infinite and deeply intimate reasons why millions of women and girls might want or need to have abortions: complications such as ectopic pregnancies, fetal abnormalities, extreme youth or advanced age, family size, financial woes, career aspirations, rape, abusive relationships, health of the fetus or the mother, or simply that they don't want children. Forcing women and girls to unwillingly carry their pregnancies to term is tantamount to torture. But these facts don't matter to a sanctimonious, sexist court which has relied on precedent from a century-and-a-half ago when women were not equal participants in society or government and were barred from voting; Alito cited in his draft decision an English jurist who defended marital rape and had women executed for “witchcraft.”

Chauvinism—for holding the erroneous, absurd and sexist notion that half of all Americans don't have a fundamental right to control their own bodies and destinies. As some wise woman said, if men could get pregnant, abortion would be a sacrament. Chauvinism—for the way the decision hastens our nation to a place of (worse) female subjugation and punishment. Chauvinism—for the way the decision thrusts us into an American dystopia where surgical abortions will again be clandestine, will again result in rape, and will again be dangerous and lethal. Again, women and girls forced to carry pregnancies to term will be unjustly denied their constitutional right to life, liberty and the pursuit of happiness.

The Conservative Justices have scapegoated and punished girls and women by imposing their fundamentalist, patriarchal, religious and sexist agendas on them, ones to which a growing number of Americans—including some religious people—do not prescribe. The Justices used the absurd originalist argument that, because there is no explicit mention of abortion in the Constitution, women are not guaranteed access to it in their pursuit of liberty. It's worth noting that there is no explicit mention in the Constitution giving men the right to impregnate girls and women.

You know you're living in an American dystopia: when the rights of an eleven-year-old rape victim matter less than the zygote, embryo or fetus inside her resulting from that rape; when a government entity—particularly one made up mostly of conservative religious white men—attempts to control women's and girl's bodies by forcing them to carry pregnancies to term risking dire physical and emotional health outcomes, particularly in a nation that has one of the worst maternal mortality rates in the developed world; when imaginary lines drawn on a map of a nation where white colonialists slaughtered indigenous people and stole their land is what determines whether girls and women become the mothers to their rapists' children. Note: beware the anti-abortion push for a federal ban on abortion; if republicans gain control of congress this November, we'll be one step closer to that dystopia.

Our sweet boy Calvin, who I chose to have despite knowing he was missing most of the white matter in his brain, has made life for us very difficult and harrowing at times. I can't say for certain what I'd have done had we known earlier and for certain that things would turn out this way and that Calvin would suffer so. What I do know is that I wouldn't think of making that kind of deeply intimate decision for someone else. When our bodies are not our own to control, when legislators regulate them like commodities, we live in tyranny—an American dystopia—where, one by one, our other rights are at risk of being whittled away by a small group of powerful, callous, willfully ignorant and chauvinistic people who will never choose to hear our stories or walk even a few steps in our shoes.

Back when I was pregnant with Calvin, yet still child-free.
Photo by Michael Kolster