real tyranny

Yesterday, while walking in the falling snow, which overnight had made an oppressive, black and white world from one which had been so sunny, colorful and springlike, my thoughts turned again to Ukraine. I imagined its beleaguered people trying to flee their besieged cities and towns. I imagined them bundled up for winter, having taken what essentials they could from home for who knows how long. I imagined some of them walking aimlessly in the streets and subways not knowing what to do or where to go. I imagined what it would be like for them to see and hear and feel and smell the scorched and bloody reality of invasion, war and tyranny, to worry about their futures and fear their possible demise.

Of course, that is all I could do: imagine. And then I listened to a man—a doctor and chief of the NICU in Dnipro Regional Children's Hospital in Ukraine—recount to a journalist his decision on whether to flee. He said:

My family didn't want to leave Ukraine, because we love Ukraine, and we wanted to live here happy and in peace and so on. So, I said, okay, maybe everything will be not so bad. Let's wait.

So, my main question for myself is if I made the very, very big mistake not to move from Ukraine when I had an opportunity to do this.

Either [staying] was a big mistake or not so big, and I have no answer.

I can ask you: Do you want to wake up in the morning and understand you should go—forever. Not for one day, not for two days. Forever. Can you make such a decision in, uh—I don't know—in ten minutes? My question to you. To bring just a bit of water, just a bit of food, single clothes, documents, money, and go outside your home forever. Can you make such a decision? Just imagine.

When I heard this man describe his impossible decision—while imagining what might now happen to him and his family having not fled their home while they still had the chance, while imagining what Putin and his troops would do to squash the freedoms of its neighbor, the sovereign nation of Ukraine—I was regrettably reminded of certain Americans here at home.

I recalled the sign in the deli window down the street which read, "Mandate Freedom"; though I get the gist, I wonder for whom that so-called freedom is meant to be? For chronically ill kids like Calvin? For the elderly, the immune compromised, the infirm? I wonder if the sign's author considered this when he decided to post his message in such an overt way. I wonder if he ever questions his notion of freedom. I wonder if it matters to him that freedom to do as he pleases can translate into great risk, harm and cost to others. Are we free to drive on the left side of the road? Are we free to light up a cigarette or joint in a preschool, airplane or bus? Are we free to yell "fire" in a crowded theater? No. No. No.

I continued to ponder others who protest simple public health measures as examples of tyranny, such as the wise and reasonable use of wearing masks to protect the safety and well-being of all citizens during a rampant pandemic, and to avoid overwhelming and breaking hospitals. I thought about the hackneyed and misguided gripe, Don't Tread On Me, doubting that most who embrace such a claim fully understand what it means or feels like to be truly oppressed: to be barred from speaking your native language or practicing your native religion; to have your children systematically taken from you and given to someone else because of your race; to have your land stolen; to be interned by your own government because of your race; to be shut out of and shunned from public spaces, restaurants, bathrooms, lunch counters, schools, jobs, industries and elections because of the color of your skin; to have your history and identity whitewashed and concealed so as not to risk offending the self-righteous who fear their impending delegitimization; to be subject to the real tyranny of an autocrat who would stomp on your every basic human right and freedom—speech, assembly, movement, press, religion.

Amid these contemplations, I consider my son Calvin, who is in ways one of the least-free people I know. He has no speech with which to claim his desires, needs or beliefs. He has little to no control over his movements or whereabouts. He is confined to a body which gravely restrains him, and is oppressed by a brain that regularly seizes despite being awash in toxic drugs. He is relegated to a life of limitations, injustices and miseries. And yet, he holds the moral high ground over most anyone I know.

As the snow continues to fall, each flake swirling in a different direction but ultimately touching down, I hold my feverish, shivering, feeble child in my arms in the corner of the room on the green couch. Outside, the sky is still white and the trees appear blackish. I fear Calvin will have a repeat of last night's seizures; often, they come in hard-to-control clusters as if a barrage, his brain under siege. Then, my thoughts turn again to Ukrainians, and I try to imagine what it might be like to have to take up arms to fight for the right to live freely and democratically in one's own homeland. That is real tyranny.

Kyiv, Ukraine, in the wake of Russian shelling. Photo by Emilio Morenatti/Associated Press

on stamina, autocrats, war and puffy clouds

Had I not wiped the tears from my cheeks with the back of my glove they might have frozen in their tracks amid the biting wind. I had bundled myself up like a babushka, but my face was still cold. Smellie and I went out early this morning, and we found ourselves mostly alone in the fields crunching across the tundra, each tan blade of grass sheathed in ice from yesterday's sixty-degree thaw and last night's teens. My breath blew out in front of me in puffy clouds. I kept my head down; I was grieving for the people of Ukraine and for the world, and wondering at the nonsense of it all.

I had started writing about the characteristics of endurance athletes: stamina, grit, commitment, brawn, resilience, focus, backbone, spirit, determination, mindfulness. I meant to mention how Michael reminds me that I used to be one, used to swim up to four hours a day six days a week with little rest clinging to the edge of the pool between grueling sets, not to mention the hours of sit-ups, pushups and lifting weights. Sometimes I wonder, what the hell for? At others, especially during the past eighteen years since Calvin came along, I couldn't be more grateful. 

I was going to write about how I had burnt out then soured on indoor swimming after Calvin was born—my salty tears mingling with the sweaty, chlorinated water—lamenting the thought that working out while pregnant might have contributed to his afflictions.

But all that seems so goddamn trivial now that Putin has sicked his troops on Ukraine. At this moment, in the first day of launching his invasion, Pootie's military is massively attacking Ukrainian cities and towns. Innocent sons and daughters are being maimed and killed in a barrage of bombs. Families are fleeing their homes—men, women and children who just yesterday were going about their business will be refugees in what will soon be a war-torn land—in winter. All this because of the narcissistic power-lust of one twisted, sadistic, insecure, mendacious, puny little petulant man who thinks he has something to prove. Regrettably, I can think of some other dudes like that, too. Grow up, man. What universe do you think you live in? Calvin's so much better than you.

It astounds me how this guy Putin has to get so puffed up, so intent on putting his thumb on others to get whatever it is that he wants. Makes me think he was probably never valued, never loved. And so he has to make life hell for others, get attention at any cost. Tell lies like the cheater, bully and autocrat he is. Throw tantrums. Only he's doing it with lethal weapons and at the grave cost of lives and livelihoods. What a prick.

And then my thoughts leave the douchebag behind and travel to the good people of Ukraine and Russia. Hell, they've got some grit and stamina to live through this shit for so many years. They are or will be the real marathoners, taking their babies and leaving everything behind with no certain future on the horizon. Man, their horizon is full of popping, firecracker skies, helicopters and other flying war machines. And no doubt some of them have to deal with ill, elderly and infirm relatives and enigmas like my son, with all his quirks and pains and needs causing frustration, tedium and misery. Compound that with a massive military assault and evacuation. I think about this kind of thing and how we've got it so effing easy. Note to self: remember that.

And so I pause my thoughts, then send on what I can to Ukrainians, hoping they can just put their heads down and plow on through until the pain is over, like when I used to race the 400 I.M. and the mile, or like I did in the first year or more of this damn pandemic when Calvin was home from school. But war and occupation is different, and these good people likely won't get a breather, likely won't get to experience those gorgeous landscapes I leisurely drive through from the comfort of my reliable car, where the horizon, though at times it might be dark and moody, is calm and blue, full of hope and puffy clouds.

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

the kids are all right

It was the first rough night in awhile. Calvin was restless for hours before waking up around 1:00 a.m., then never went back to sleep. Michael tried sleeping with him. I gave him extra THCA cannabis oil, a few sips of water and a couple of ibuprofen. Michael changed a diaper. But our efforts proved futile, so—exhausted—we finally left Calvin alone in his safety bed with his toys, lights and music while we tried to get some shut-eye despite his banging and howling in the attached room. My guess is he is ramping up to a seizure, probably tonight.

Having said that, Calvin has had only three grand mals and one focal seizure in the past thirty-one days. That's the fewest number of monthly seizures in over a year, and the fewest number of days with seizures in a month's time. And though Calvin could easily have three or four seizures in the next day or two, I'll take it over having seven to nine grand mals plus a smattering of focal seizures in a month's time (though if he does have a bunch of seizures this weekend, you can be sure I'll be grieving.)

But if he enjoys another longish stint between seizures—say, nine-plus days—I'll begin to think the new drug, Xcopri, might indeed be working to lessen his fits. Let's hope so. We kids need a break.

In the meantime, when Calvin is in school or at home with Michael, I'm managing to get out a bit for long walks in the mist, sun and wind, and on slushy, icy fields and trails. I'm having fun capturing some magnificent landscapes and skies on my cell phone and Panasonic, plus taking shots of Smellie and the ever-changing, sometimes dramatic evening skies at the fields. Layers are coming off in the milder weather, and songbirds are singing from tops of trees. Tons of smiles and waves have been coming my way, as well as visits with chatty strangers (must be the springlike weather). I'm slowly editing and adding to my memoir manuscript, which at this point is over fifty-six-thousand words despite having been largely neglected during the first two years of this damn pandemic. I'm having fun hanging out with my husband in the evenings listening to and watching Led Zeppelin and The Beatles, dancing like a fool in front of the fire, making us both laugh, watching some nice films and reading some good books.

So, yeah, in the scheme of things and for the most part, I'd say the kids are all right. 

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

a good day for musing

it's a good day for musing: on crystalline skies and arctic climes; on bundling up and trudging down open roads; on icy patterns fanning across salt-blanched tarmac and pristine white ponds; on a twenty-something runner with thick-braided pigtails jogging past me, smiling and breathing in time with her rock star companion, steven tyler; on a place so calm the music still found my ears from half a mile down the road.

it's a good day for musing: on the beauty of a frozen tidal cove; on its greenish gash resembling a clownish mouth, white pancake makeup and all; on its vast flatness; on the footprints of those who dared walk across as it invisibly ebbed and flowed; on the marvel of ever-changing landscapes; on two huge birds perched atop a gnarly oak; on their wide wings and undersides white as snow; on a skinny dog who runs to my side from the middle of the road whenever i call; on the musky scent of weed wafting from an open window of a passing truck; on having—only minutes before—filtered some alcohol-soaked bud in the making of calvin's cannabis oil, filling the house with its rich aroma.

it's a good day for musing: on freezing cold fingers sheathed in polypropylene gloves; on unknown yet friendly ones which wave to me from behind windshields; on the satisfying click of my panasonic's shutter when i push its shiny metal button; on finding someone's running shoes which had been buried in the blizzard then unearthed by a passing plow; on who might be missing them: perhaps a pigtailed runner?

it's a good day for musing: on juniors and seniors; on having known them and watched them grow; on infants and toddlers who turn into runners, skiers, skaters; on grade schoolers who morph into gawky tweens and smart, creative, athletic teens; on ellis, a sweet, curious and extraverted girl—calvin's first grade classmate, his first and only play date; on her mother, who stops by sometimes with flowers, jars of homespun applesauce or tins filled with herbal salve; on the bit of my childhood self who i see reflected in ellis—her effervescence, wit, energy, and unabashedness; on ellis' friend fiona, with whom i used to read books at school as calvin flailed, who now—all of a sudden—seems so grown up.

it's a good day for musing: on finnegan and his mother; on bringing the world to her in loving words and photographs; on our picnic and long walk one evening last summer; on reliving the feeling of jumping with her in the dark from a nearby bridge into brackish waters while wearing almost nothing; on the freeing feeling of trusting others; on laughter and weeping; on the sensuality of maine's extreme weather—heavy and sweltering at times, at others, clear and light with cold that cuts to the bone—all worth feeling.

it's a good day for musing: on my enigmatic child who never grows up; on the toys he's loved and chewed for years; on his wordlessness and seizures; on his peculiarity and fleeting moments of normalcy; on his steadfast and loving behavior; on having just had one of his best months, seizure-wise, in two years; on beauty in all its forms, understanding, forgiveness, gratitude and hope.