dear friend

now i will be strong for you. i can. you will stay in my thoughts and you will shine. i know. focus on the little things. the smell of your coffee, the feeling of the sun on your face. the wind in your hair. the quiet of a back road. the taste of clover and salt in the air. the warmth of a loved one's hand. the feeling and sound of the ground under your feet ... tarmac ... carpet ... tile ... wood ... rubber ... linoleum ... sand .... grass. the happy din of knives and forks on a plate. the rich taste of dark chocolate. the sound of bees and birds and brooks—even the memory of them. the color of the sky at dawn. at noon. at dusk. in the middle of the night. the patter of rain on a metal roof. the beauty of wilting flowers. the happy creases in the corners of smiling eyes. the long embrace of a friend. the light caress of shower water as it trickles down your back. the smoothness of soap in your hand. the buzz of a crowd. linger on these little things and let them move you. let them make you weep. they can be a joy in and of themselves. let the other big stuff take a backseat, if only for a moment. know you will remain in my thoughts. know i will listen and be there for you. as you have been for me. because, despite my own burdens (everyone has them) i have an infinite reserve of strength for you.

reason and being, purpose and meaning

I watch as a boy of five or six falls off of his bicycle. Somewhat remarkably, he lands squarely on his hands; his feet quickly follow. Having escaped injury, he rises and claps triumphantly, then begins to do a goofy, self-styled boogie, which is perfectly annoying to me. The caption on the video reads, "This should be your reaction when life challenges you."

For starters, I'm not a fan of the word, "should." I try not to "should" anyone, including myself. The rest of my cynical response to the video was—like most things—informed by my profoundly disabled, nonverbal, seizure-prone son. Calvin had just come off of a very shitty few weeks which began with back-to-back grand mal seizures, followed by waves of excruciating pain of unknown origin, the likes of which reminded me of Hollywood torture scenes. Ultimately, Calvin landed in the emergency room on New Year's Eve with an agonizing case of viral gastroenteritis and/or a problematic gallstone, which—after reviewing X-rays, a CT scan, and several blood draws taken at ungodly hours—the doctor said had likely caused the aspiration pneumonia in Calvin's left lung. We were released from the ER the following morning, and though I was relieved to be out of there, I didn't feel like dancing a jig; I felt only grateful that it seemed we may have dodged the latest bullet in Calvin's lifelong barrage of them.

Calvin reminds me daily that not everyone is equipped or inclined to celebrate or give ourselves high fives after life's nasty pitfalls, even if we eventually land on our feet. Sometimes, some of us come away from challenge and hardship feeling confusion, guilt, insecurity, anger, angst, resentment, exasperation, despair. My first reaction to the dancing boy was to acknowledge that not everyone is sailing along in life in the first place, or lucky enough to avoid misfortune such as hunger, war, poverty, displacement, abuse, injustice, depression, the death of a child, or one born to a life of profound physical and cognitive limitations and miseries, like Calvin. Call me a Debbie Downer for criticizing what some might consider a harmless, light-hearted video. I mean, I get the gist, and I'm generally an upbeat optimist who sometimes even welcomes challenge, however, I look at certain subjects through a more serious lens than others.

The video also reminded me of the countless times people have told me that everything happens for a reason. Though the sentiment is meant to be comforting, I generally respond by disagreeing, then go on to explain my preference for the notion of gleaning great purpose and meaning from life's hardships (a practice which can also be elusive to some) as opposed to there being some mysterious reason baked into every awful thing that happens. If I probe, some folks claim that bad things happen to teach us lessons. I usually respond by telling them I am not worthy of my son's suffering. Others say we can't know the reasons for mishaps and tragedies, but that God has a plan. I'm always left wondering: if there is an omnipotent god with a plan for everything, why does it so often include godawful misery, and how is that not deeply disturbing if not unthinkable? Would an all-powerful god orchestrate every little scrape and bruise I get and/or the immense suffering my son endures? Does God stage and sanction starvation, war, genocide? What kind of god has a reason—and what in God's name could that reason be—for the torture of "his" beloved children at the hands of others, or from excruciating illnesses? And if God isn't responsible for orchestrating horrors such as mass shootings, catastrophic fires, floods and earthquakes, then why doesn't "he" rescue us from suffering? Even we puny humans will do virtually anything in our power to save our children from pain. Why doesn't God? And if there is a reason for everything, what does that say about the notion of free will? Lastly, some people say God is testing us, and my immediate response is to ask: for what purpose? To what end? Is God conducting some test of fidelity, and if so, what deep conceit does that reveal? And what would be the point of testing us, knowing we are impossibly fallible beings?

I've found myself ruminating over the bicycle-boy video and related conversations for weeks, and I'm taken back to my childhood. Despite being raised Catholic, I began doubting the existence of a merciful, omnipotent god when my best friend's two-year-old sister nearly drowned in their nearby swimming pool. I had been outside when I heard the dog barking and the mother discover her baby girl lifeless in the water. I had never heard a grieving human shriek and howl so animalistically. She fished her daughter out of the pool and resuscitated her. The child survived, but was in a coma for at least a week and emerged from it no longer a toddler, having lost every one of her acquired skills. Her recovery, while not utterly complete, took years. I'm surprised her mother survived the ordeal, and I wondered if she felt as if God were punishing her for some petty transgression. It didn't make sense to me that a merciful god would allow any of "his" flock to suffer and grieve so deeply. It all seems so utterly senseless.

In continuing to ponder the theory that everything happens for a reason, I wondered if maybe that reason is merely that we exist. Perhaps it's as plain and simple as that: we exist, and therefore things happen to us. It seems reasonable that all things great and small, as in nature—rain, sunshine, hurricanes, earthquakes, moss growing on trees—just occur without any divine reason. In other words, as the saying goes, shit just happens. It makes sense to me—and frankly is far more comforting than the notion of a god with a secret plan sitting idly by while we are tormented—that our every move isn't governed, decided, judged and orchestrated by a god. And, too, maybe overcoming life's nasty challenges and curveballs isn't always reason for smug celebration, but rather, a time for reflection, gratitude and humility, especially considering so many of our fellow beings, through no fault of their own, live in a world of misery.

Photo by Michael Kolster, August 2021

nineteen

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.

Seven weeks passed before we brought Calvin home from the hospital. At the time, Michael's employer did not offer parental leave (oh, how we could still use some) and, while Calvin was in the neonatal intensive care unit fighting to thrive, the college asked Michael to take on an ill colleague's course of classes in addition to his own. Thankfully, for our sake, he said no.

Every evening after work, Michael made the thirty-mile drive to Portland to be with me and Calvin in the hospital before spending the night with me in the nearby Ronald McDonald House where parents of sick children are provided meals, a comfortable place to sleep and, for some, a private place to grieve.

Halfway through those heart-wrenching and difficult first seven weeks, when Calvin became just strong enough to be transported via ambulance, he and I took up residence in our local hospital's labor and delivery ward. Every night for three and a half weeks, Michael brought me a home-cooked meal, which we ate together at a little round table in the corner of the room while Calvin slept. Our friends, Ta and Jerry, and Michelle brought us meals, too.

I hear parents remark, often lamentably, about how quickly their children grow up. I get the sentiment; I feel the fleeting passage of years in my life, too. In some ways, yes, Calvin "grew up" in a blink. But his nearly-imperceptible and in most ways halted progress has had a way of slowing time to a crawl; I mean, I'm still changing diapers after nineteen years; that kind of thing can have the affect of stunting time. But the protracted passage of time has led me to be mindful of every moment of the past eighteen years, and to have felt them deeply—beginning with the tragic sonogram, the fear, the feelings of grief and loss, the hopelessness and uncertainty, the joy and surprise, the frustration and resentment of raising a child like him. I've done and been through some difficult things in life, but nothing compares with this marathon. At the same time, I've felt the most extraordinary love for my nonverbal, legally blind, autistic, enigmatic, impossible child who has virtually been joined at the hip with a me for nineteen years. Suffice to say, it's been a wild ride; I'm exhausted and proud.

Last year, instead of celebrating Calvin's transition into manhood, I began his eighteenth birthday by cradling him in my arms like a baby again, my eyes stinging and welling up after four days of seizure-related worries, woes and sleep deprivation. The world looks blurry through watery eyes and wet lashes, and I thought about how much easier it would be to raise him if it weren't for relentless seizures and drug side effects that make him so irritable at time, and impossibly restless. 

This year, the day began as most do more recently, which was with a long and strong embrace from Calvin, including mutual back rubs, as he stood in his pajamas after I helped him out of bed and before I changed his soaking diaper and onesie and got him dressed for school. It has been nine days since his last seizure having avoided one on the full moon, so we have that to celebrate, too.

At nineteen, my sweet Calvin still cannot utter a word, put on his own socks and shoes, eat independently with a spoon, follow most instructions, turn a door knob, read a book, choose items at the grocery store, calm his body or be by himself. Still, there are moments of joy with my heartbreak kid, who can both exasperate me and melt me into a mess of motherly love. I guess, in that sense, we're no different than any other mother and child.

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

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.

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?

 

graduation day

Calvin would be graduating from high school today with so many of his proud, talented, smiling peers if things hadn't gone so terribly wrong from the start. For reasons we will probably never know, life with Calvin didn't turn out like we had hoped. What I thought of as the promises of parenthood did not deliver. 

While in the garden today, throwing mulch down, pruning, mowing the lawn—controlling that over which I have some semblance of control—I thought about all the ways in which the three of us have been cheated. You've probably heard it all before. We have been deprived of: seeing our child in school concerts and plays; cheering him on at athletic events while making friends with the parents of other athletes; joining family potlucks and picnics and pizza parties and movie nights; seeing our boy bring a sweetheart to prom. These are but a smattering of what we have had to forego because of Calvin's conditions, and thinking of them makes me sad second-guessing our decision not to have another child, albeit a healthy one, so we could cash in on some of parenthood's most precious experiences.

Michael and I have missed the chance for dinner conversation with our child, the chance to hang out with him at the beach, the mountains, the swimming hole, the movies, at restaurants and other venues. We have missed sharing our love of camping with him and have had to give up on that venture all together. We have missed the chance to leave him home alone so we can walk the dog or go for an impromptu anything together as a couple. We have been cheated out of seeing our boy excel in whatever he might have enjoyed, and perhaps gracefully endure defeat and failure. We have been robbed of watching him become a man. We've been cheated out of seeing him travel, study, have friends, fall in love. We'll never know the joy of having grandchildren.

While rereading this, I feel like a major whiner. So many people have it so much worse than we do, deprived of their basic freedoms, of food, shelter, water and modern conveniences, of seeing their loved ones. From where I'm sitting outside, I gaze out over a glorious garden of my making, the early-evening sun shimmering through the maples while I hear Calvin upstairs, with Michael, patting on the windowsill of our bedroom. The bell of the college chapel strikes half past four. A soft, warm wind blows a couple of wind chimes. I'm so goddamn lucky, I think to myself.

And so when I see the families of graduates tonight—some of them my friends' sons and daughters—stepping out of their cars parked in front of our house, I'll be both happy and excited, living vicariously through them as I do of other's travels. I'll also be silently heartbroken, and may shed a tear when I look into my husband's eyes tonight over a glass of wine and a lamb burger. But I'll also be full of gratitude looking out over a garden which I have shaped and sheared into a sanctuary I can appreciate as much for its beauty as for all the promises it reliably brings to me each year. Most of all, I'be be grateful for a son who, though he's not destined for college or travel or rocket science or journalism or art or marriage, still gives me what I wager every parent wants most from their child.

senioritis

Spring is in the air. Lilacs and azaleas are in bloom. Lupine is blanketing the hillsides. Showy large-leaf rhododendrons are budding into trusses of red, pink and purple. Students are donning chambray shirts, khaki shorts, flip-flops, capris and flouncy dresses. High school seniors have wicked cases of senioritis, their minds on summer and beyond, eagerly awaiting the last day of school before graduation. I remember the feeling.

I'm suffering the effects of my own version of senioritis. This is the time of year when I hear and watch the students breeze past our home on foot, bikes, roller skates, cars, skateboards. I see photos of them on social media dressed to the nines on the way to prom with their sweethearts. I wait for the day, with both excitement and trepidation, when our street becomes choked with cars, and out of their doors step throngs of seniors who then stroll past with their families on their way to commencement at a nearby venue.

When I was pregnant with Calvin, Michael and I fully expected he would graduate from high school this year along with two of our friends' sons, the three of whom were due to be born within a week or so of each other. Alas, Calvin arrived six weeks early, and his brain malformation drastically changed his trajectory and our expectations of him and what parenthood might offer.

Some very dear West Coast friends have a son just three months older than Calvin. Recently, they sent us their boy's graduation announcement and his handsome senior photo. In a separate envelope, his mother included a thoughtful, handwritten letter. In it she wrote:

We love you guys and hope it is ok to share this moment with you via Luc's announcement. Our boys have circled the same number of suns but their journeys have been unfairly different. Even so, we celebrate Calvin too, and all he and you both have accomplished in the face of constant, deep and shifting challenges. He would not have come this far but for your loving strength. And all the beauty you have created in writing and photography and gardening and friendships and teaching and cooking while raising Calvin—well, Miss Rumphius would approve.

My eyes stung and watered, and I wondered who Miss Rumphius was; though her name sounded familiar, I couldn't place her. Nevertheless, it was one of the kindest most sensitive gestures we've gotten regarding Calvin, right up there with the handmade, hand-delivered birthday cards our friends' son, Felix—who was born when Calvin was meant to be born—has given Calvin every year without fail since Felix was old enough to write and draw. 

The morning after we received the graduation announcement and letter—before Calvin gave me Covid—I ran a 5K out at Pennellville. Before the halfway mark, I came upon a beautiful swath of lupine sprinkled with buttercups growing thickly aside a drainage ditch. I paused my workout to photograph it. When I got home I showed Michael the photo, and he reminded me who Miss Rumphius was. In the children's book named for her, Miss Rumphius—who was inspired by the real-life "Lupine Lady," Hilda Hamlin—spread lupine seed along the Maine coast in an effort to make the world more beautiful.

Recounting my friend's kind sentiments, plus the serendipitous discovery of the lupine and her suggestion that I and my husband, despite the travails we've endured with Calvin—or perhaps because of them—have made the world more beautiful, deeply touched me. I realized that a high school diploma is but one accomplishment in a world full of challenge and opportunity. I realized that Calvin has endured more adversity in his eighteen years than perhaps most people will in a lifetime. I realized that I am immeasurably proud of him for the obstacles he has surmounted and for the person he is. Calvin is, with no doubt, the best person I know because of his purity, affection, unconditional love and acceptance of everyone, no matter who they are. Those accomplishments and qualities are things worth celebrating, and being reminded of them by a thoughtful letter from a dear friend does a lot to assuage my case of senioritis. 

Calvin's preschool graduation photo

besieged

Last night just before eight, my son began to seize. While his body convulsed, his lungs were cut off from oxygen for a minute or more. His lips, fingers and toes turned blue. Watching him, I thought of the dusky, lifeless face and hands of the schoolboy who was shelled by Pootie's Russian troops over the weekend. He died in the street beside his mother and sister while they were trying to escape. Others died too. Here at home, after his spell, my boy simply drifted off to sleep, safe and sound.

Of late, my thoughts are almost exclusively with Ukrainians. When I walk alone on the back roads, the skies are free of enemy aircraft. I'm keenly aware of not being shot at or shelled. I wonder if this Maine landscape looks at all like Kyiv or Mariupol. Wonder if those places, too, are beginning to thaw. Halfway through my misty morning walk, at about the two-mile mark, I feel a dryness in my mouth. I think about living in a city under siege, surrounded by an enemy intent on strangling any and all sustenance. When I catch droplets of mist on my tongue, I know my thirst can't be quenched, and I wonder for how long a body can go without water. Not long.

My thoughts turn to my boy who is only five-feet one and ninety-two pounds; still, he's a giant compared with the puny little unloved men who manage to stay in power only by strong-arming, issuing threats, telling lies and spreading propaganda. You know who they are. They use the term "fake news" with reckless abandon. They brazenly lie to their constituents. Enrich themselves. Rewrite and whitewash history. Engage in ethnic cleansing. Squash the tenets of truth and justice. Commit genocide. I don't believe in the place, but if it exists, I hope they go to hell, and soon.

My nonverbal, incontinent, uncoordinated, epileptic, autistic son is so much better than them. He not only loves unconditionally, he very literally envelopes people with his affection and is afraid of no one. Most of all, he doesn't discriminate. And though his antics and afflictions often mess with my well-being, he's not like the effing fascist autocrats bent on ruining the world with their vile, narcissistic doings.

Meanwhile, I weep while reading the good news. News about American veterans heading to Ukraine to help in the fight against Pootie's fascist tyranny. News about Ukrainian troops getting married under gray skies like these, surrounded by friends and rocket-propelled grenades and antitank missiles at the ready. News about the secretive vigilante cyber group known as Anonymous which is hacking into Russian streaming services and State television to broadcast footage of the bloody and destructive war their president is waging. About the flood of Airbnb bookings in Ukraine by people abroad not intending to check in but hoping to help ease the suffering of the besieged.

After calvin's seizure, as usual, I woke up several times. It was quiet. I pulled his cover up over his shoulders, gave him extra cannabis oil to thwart any further spells, gave him a few sips from his bottle, then went to get a drink of water. Outside the bathroom window I saw Orion in the southwestern sky with his belt and club, shield and sword. As always, I imagined him not as hunter but as protector of underdogs. And I thought again of Ukrainians—each one of them underdogs besieged in their own way, cut off from family, democracy, freedoms, food and water, husbands, sons, fathers, brothers ... breathing—hoping they can withstand the constant pummeling somehow, just like my own little Calvin.

can't help myself

Tuesday night at seven, while Michael and I were eating dinner, I heard Calvin yelp. He was seizing. Michael and I ran upstairs, unlatched Calvin's safety netting and bed panel and scooted him toward us so his feet wouldn't strike the bed's wooden edge. When it was over, we dimmed the lights and ate the rest of our dinner, plates in our laps, while sitting vigil as Calvin tried to catch his breath before drifting back to sleep. It had been ten days since his last couple of fits.

I'm not one to shy away from a challenge, but if I knew how hard this mothering thing could be, I'm not sure I'd have signed up. While raising Calvin, I've experienced joy, pride, and immeasurable love, but too often it really sucks. Parenting him has meant sacrificing—almost entirely—opportunity, dreams, travel, leisure, freedom, a good night's sleep. Many parents might share these sentiments. But what I thought of as the promises and joys of parenthood (you know what they are, and I've written about them ad nauseam) have been replaced by a lot of grief and anguish. Since Calvin's birth, I've watched him endure more suffering than any little brain and body should—an excruciating and unnecessary intubation, painful IVs, blood draws and surgeries, digestive distress, relentless seizures including a horrifying one that lasted forty-five minutes, vicious drug side effects, agonizing withdrawal. I've seen days upon weeks upon months upon years of what I think might be nausea, migraines, tinnitis, cramps, akatheisa (acute and chronic restlessness), panic, and perhaps even psychosis. Nearly every day—whether for moments or hours—he doesn't seem to feel very good.

While many of us, including me, learn to live with the hardships of life, in some ways adjusting, I'm not sure that is true for Calvin; it appears, judging by his frequent moaning, shrieking, head-rubbing, eye-poking and howling, that his miseries persist. It's hard to imagine feeling bad so often. What kind of life is that for any child to live? Witnessing it nearly kills me (and doesn't make me stronger.)

In mothering my legally blind, nonverbal, uncoordinated, incontinent, autistic, seizure-riddled son, I've become a hypervigilant helicopter mama, and I haven't managed to find any way around it. My son's afflictions require I be on guard at all times to limit his risk for trips and falls and broken bones, choking, drowning in the bath, epileptic fits. I'm laser-focused on trying to lessen his misery—from headaches, tummy aches, toothaches, anxiety, hunger, thirst, restlessness, constipation, discomfort, and cold. It's my job. If you think that's an impossible feat with a kid who can't express in words, signs or gestures what is troubling him, you're right. I can only do my best to constantly anticipate, observe and analyze. I must rely on logic, common sense, and instinct. How else can one care for a kid who is such an enigma? My brain is working on treatments, preventions and solutions for any given situation pretty much around the clock. I even dream about this shit, both literally and figuratively.

Reasonably, or so I believe, I ask and expect similar vigilance in others who take care of my son. Regrettably, however, my hypervigilance seems to lead me to micromanage. Though I don't mean to, I can come off as critical, which is sometimes met with defensiveness. I get it. Though my intentions are good and I try to be kind, I'm perhaps not the best messenger for my own messages, in part maybe due to my assertiveness and candor which—for whatever reason(s)—are often not appreciated, valued or understood. To make matters worse, in my hypervigilance I often vacillate, communicate too much information or not enough, causing others to second-guess for fear of making a mistake. They tell me they don't know what I want. Self-deprecatingly, I tell them no one does. Half the time I'm not even sure if what I recommend for Calvin is right; I often question myself. Just as the book What To Expect When You're Expecting proved utterly useless to me during and just after my pregnancy, there's no handbook for taking care of a kid like mine.

But one thing is for certain. There is a method to my madness: to keep my son as happy and feeling good as possible despite his circumstance. And in that way, perhaps it's a blessing and not a curse that I just can't help myself.

Photo by Michael Kolster

eighteen

Eighteen 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—tiny 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.

Seven weeks passed before we brought Calvin home from the hospital. At the time, Michael's employer did not offer parental leave (oh, how we could still use some) and, while Calvin was in the neonatal intensive care unit fighting to thrive, the college asked Michael to take on an ill colleague's course of classes in addition to his own. Thankfully, for our sake, he said no.

Every evening after work, Michael made the thirty-mile drive to Portland to be with me and Calvin in the hospital before spending the night with me in the nearby Ronald McDonald House where parents of sick children were provided meals, a comfortable place to sleep and, for some, a private place to grieve.

Halfway through those heart-wrenching and difficult first seven weeks, when Calvin became just strong enough to be transported via ambulance, he and I took up residence in our local hospital's labor and delivery ward. Every night for three-and-a-half weeks, Michael brought me a home-cooked meal, which we ate together at a little round table in the corner of the room while Calvin slept. Our friends, Ta and Jerry, and Michelle brought us meals, too.

I hear parents remark, often lamentably, about how quickly their children grow up. I get the sentiment; I feel the fleeting passage of years in my life, too. In some ways, yes, Calvin "grew up" in a blink. But his nearly-imperceptible and in most ways halted progress has had a way of slowing time to a crawl; I mean, I'm still changing diapers after eighteen years; that kind of thing can have the affect of stunting time. But the protracted passage of time has led me to be mindful of every moment of the past eighteen years, and to have felt them deeply—beginning with the tragic sonogram, the fear, the feelings of grief and loss, the hopelessness and uncertainty, the joy and surprise, the frustration and resentment of raising a child like him. I've done and been through some difficult things in life, but nothing compares with this marathon. At the same time, I've felt the most extraordinary love for my nonverbal, legally blind, autistic, enigmatic, impossible child who has virtually been joined at the hip with a me for eighteen years. Suffice to say, it's been a wild ride; I'm exhausted and proud.

Instead of celebrating Calvin's transition into manhood, I began his eighteenth birthday by cradling him in my arms like a baby again, my eyes stinging and welling up after four days of seizure-related worries, woes and sleep deprivation. The world looks blurry through watery eyes and wet lashes, and I think about how much easier it would be to raise him if it weren't for relentless seizures and drug side effects. Still, there are moments of joy with my heartbreak kid, who can both exasperate me and melt me into a mushy mess of motherly love. I guess, in that sense, we're no different than anyone else.

Happy birthday, Calvin. You're the best! We love you so much.

Photo by Michael Kolster

longer stretches

Hours before dawn, I curled up next to my son for the second morning in a row as he shivered and shook in my arms. After the last increase in Calvin's new medication, Xcopri, he went two weeks without any seizures at all, which is a decent stretch of recent. It seems, however, that he has a pattern of going for "longish" seizure-free stretches, followed by one seizure, then going for another longish stretch, only to have a cluster of two or more seizures. In effect, he doesn't really seem to get ahead in terms of fewer overall seizures, which, of course, is the goal.

Witnessing Calvin seize is always distressing. Each grand mal—the kind he most often has—starts with a blood-curdling shriek or howl, which sounds as if he has seen something absolutely terrifying or is being murdered. I can't describe it any other way, but it's a horrifying sound to come from anyone, especially one's own child. As it happens, Michael and I jump from our bed (the seizures almost always happen in the middle of the night) unhook and unlatch Calvin's safety net and bed panel, then kneel down next to him. Michael gently holds Calvin' hands and offers him reassuring words as he convulses like, good job Calvin! in an attempt to help slow it, while I make sure Calvin doesn't break his toes kicking the wooden lip of his bed. About ninety seconds later, when it is over, we watch the color come back into his dusky fingers, toes and lips. It takes Calvin several more minutes to totally catch his breath owing to fluids and/or soft tissues that seem to periodically obstruct his airway. Then, when that trouble has passed, I syringe a milliliter of my homemade THCA cannabis oil into the pocket of his cheek in tiny bits; this seems to prevent a second seizure from occurring after he falls back to sleep.

I'm sitting here now wondering if last night's storm and low barometric pressure had anything to do with triggering his fit; it does seem like they are sometimes weather-related. In any case, he's not really well or strong enough to get into the car for a ride. He's also restless, on and off the couch, and not eating much to speak of. But, he is doing better than after yesterday morning's seizure, which is encouraging, though I wouldn't say he's out of the woods yet.

We increased Calvin's new medication again last night, but it will take a week or two until it reaches what's called a steady state, that being a higher constant level in his blood. I hope he doesn't begin to suffer badly the side effects the drug is mostly known for, which is dizziness, major fatigue and lack of appetite. It is hard enough keeping weight on this kid.

So for now, we will hunker down at home listening to music and to the snow plows and blowers outside. I'll get outside with Smellie for another walk in the woods when Michael gets home from working in his studio. I'll sit on the couch in the sun writing, and I'll dream of springtime and flowers and of longer seizure-free stretches for my kid.

In the wake of a seizure, April 2020

helplessly hoping

Helplessly hoping

Her harlequin hovers nearby

Awaiting a word

Gasping at glimpses

Of gentle true spirit

He runs, wishing he could fly

Only to trip at the sound of good-bye

Wordlessly watching

He waits by the window

And wonders

At the empty place inside

Heartlessly helping himself to her bad dreams

He worries

Did he hear a good-bye? Or even hello?

They are one person

They are two alone

They are three together

They are for-or each other

Stand by the stairway

You'll see something

Certain to tell you confusion has its cost

Love isn't lying

It's loose in a lady who lingers

Saying she is lost

And choking on hello

They are one person

They are two alone

They are three together

They are for-or each other

—Crosby, Stills & Nash

2017