on pandemics, mindfulness and mother nature

too many close covid contacts compelled me to yank calvin from school. wanna get him his booster soon as possible. his immunity has dwindled over so many moons. don't want him to catch omicron or delta—or other worse versions that might yet emerge. he already has too many woes. want to avoid the hospital at all costs, too. don't want to risk infecting others. wish that were the way everyone rolled.

today is the winter solstice. i can feel it in my bones—the calm. the chill. still, these are some long-ass short days taking care of calvin alone. not much to do when it's so damn dark and cold. and now the ground is covered in snow. means we're mostly stuck indoors. means i have to practice mindfulness. focus on little things—the curve of a glass or face, the color of the sky, the smell of baking bread, the sound of creaky wood floors—and on gratitude. have to tread water a little bit longer. hold onto hope. stay upbeat. thankfully, i'm pretty good at that, though calvin's recent spate of day-long mania makes it difficult. at least at night he's sleeping.

for fourteen months i did it. at the start of this damn pandemic. same old same old—hung out with calvin at home. he can't do remote school. can't use a screen. can't watch videos. can't read books. can't play with toys. can't sit still. i feed him and dress him and bathe him and potty train him. wipe him up, too. regrettably, you've heard it all before. no teachers or aides or nurses to take up the slack. only michael and his fabulous companionship and cooking. thank goodness. something i try to forget: even when there's no pandemic, our lives are hardly different.

i turn to things that help pass the time: long car rides on back roads, baths. about all i can think of. while driving, i listen to music. note the changing light and weather and landscape. see the nuance. compare it all to last year, my memory of it. see passersby braving the cold. they sometimes smile at me and wave, make my day in doing so. i try to find delight in getting all bundled up. laugh at myself sloshing around in my oversized boots (men's treads are better.) would rather romp in sneakers, jeans and t-shirt. even in winter—perhaps especially—runs and walks in the morning and evening with smellie do me good. out where the sky is big and the sun is coming up or setting. casting long shadows. painting clouds sublime colors. out where i feel my smallness most. like the first star appearing at twilight, only tinier. and yet part of something far larger and unknown. long-ass days are good for pondering this sort of thing. it's fine there are no answers, though i'm not really looking. wonder keeps me curious and humble.

a friend shared this poem with me when she saw my photo below. and though i'm no believer in the god of organized religions, i can get behind and into mother nature. so i think of "her"—the universe and all its forces—when reading it, praising only nature. and in the spirit of mindfulness and beauty, i'll pass this morsel on to you:

Pied Beauty 

Glory be to God for dappled things— 

For skies of couple-colour as a brinded cow; 

For rose-moles all in stipple upon trout that swim; 

Fresh-firecoal chestnut-falls; finches’ wings; 

Landscape plotted and pieced—fold, fallow, and plough; 

And áll trádes, their gear and tackle and trim. 

All things counter, original, spare, strange; 

Whatever is fickle, freckled (who knows how?) 

With swift, slow; sweet, sour; adazzle, dim; 

He fathers-forth whose beauty is past change: 

Praise him.

—Gerard Manley Hopkins

back at home and on the road

Last week at school, Calvin came in close contact to three individuals infected with Covid-19. A close contact is considered direct physical contact or a total of fifteen minutes in any 24-hour period within six feet of someone who has tested positive for Covid-19. The day after Calvin tested negative following his first close contact, which was the Monday before last, we learned of the two additional exposures last Thursday and Friday.

Today, I made the decision to keep Calvin home from school until after the holiday break. The decision was not an easy one; Calvin will miss out on riding the bus and spending time with his teacher, aides, therapists and classmates. Instead, he will be mostly cooped up at home playing with his baby toys, spinning in his swing, taking baths and car rides, and walking aimlessly around the house and yard with me, as long as there's no snow on the ground. No doubt it will be an inconvenience for me, too, in that I'll have far less time to myself for things like writing and taking showers, and I'll have to deal with Calvin—his needs and behaviors—around the clock again, after having done so for more than a year at the start of this damn pandemic. Thankfully, Michael helps out when he can, and does all of the cooking, which is amazingly tasty. And, I feel fortunate to be in the position to take that decision, in that I no longer have a job or career to worry about.

The decision was mainly taken to prevent the risk of any additional close contacts at school. Keeping Calvin free from additional close contacts will allow him to get his booster shot sooner than later, since boosters can't be given until two weeks after a close contact. What with Covid cases surging, and in light of the recent emergence of the more contagious Omicron variant, I want Calvin to have maximum immunity around the time he goes back to school on January third. A booster before Christmas will do that.

So, for the next two-and-a-half weeks, life for us is going to look pretty much like it did last winter: back at home and on the road for long car rides, taking in the scenery, waving at friends and strangers, and listening to music. We survived more than an entire year that way, so I'm sure we can manage to do it again without too much trouble.

In other news, we have slowly increased Calvin's new antiepileptic drug, Xcopri, from 6.25 mgs to 18.75 mgs per day (I'm splitting pills into halves and quarters) without seeing any noticeable side effects. Most adults take doses between 100 to 400 mgs a day. My goal is to increase Calvin's dose only when he has a breakthrough seizure. The titration schedule suggests increasing the dose every two weeks regardless. That makes no sense to me. In my mind, less is always better if it can work. My hope is that he doesn't have to take more than 25 to 50 mgs when all is said and done. I want to avoid taking him to extreme doses in an all-out effort to achieve seizure freedom. I want him to have a decent quality of life above all else, which might mean trading a few seizures to avoid heinous side effects, if you know what I mean.

So far, Calvin has gone eleven days without any seizures, and has had only one seizure—a grand mal—in the month of December. Knock on wood. Cross your fingers. See you on the roads.

close contact

It's not an email any parent wants to receive: its bold, underscored letters and bright yellow highlights; its list of symptoms; its advice to call 911 in case of any serious signs such as confusion, pressure or pain in the chest, blue-gray-tinged skin, lips and nail beds, inability to wake or stay awake.

Yesterday's message came from my son's high school, notifying me that Calvin was identified as a close contact to a Covid-19 case the day before. I don't know if the infected person was a classmate, a therapist, or an aide in his classroom or someone on the bus. Due to privacy concerns, the school nurse can't tell me. What I hope is that the infected person wasn't responsible for feeding Calvin or being with him for the entire day.

I forwarded the email to Michael with a one-word intro—fuck. I'm a bit worried, because while Calvin is fully vaccinated, he hasn't gotten his booster shot yet because, despite his list of comorbidities, especially epilepsy, he isn't old enough and won't be eighteen until February. His second shot was last April, so his immunity has very likely waned. I've kept questioning why he can't—shouldn't?—get a booster yet. Word remains he has to wait.

When I called my friend to cancel our long-overdue plans to bring her and her husband dinner tonight, my voice began to stammer. I was able to hold it together during our conversation, but it was hard to keep my imagination from drifting to little Charlotte Figi, my friend's daughter who was in many ways like Calvin, most notably her relentless and stubborn seizures. Her entire family got Covid-19 in the early months of the pandemic. Everyone recovered except for Charlotte. She was just a teen, a twin, so sweet, mild, innocent and beloved.

I gathered my thoughts, then began writing messages—to Calvin's teacher, to his former aide, Mary, who was going to take care of Calvin while we went to our buddies' house with dinner, to some out-of-town friends—distant relatives, really—who were going to drop in for supper on Friday after not having seen them for years, to four of our favorites who were staging a home invasion for this Sunday, complete with all the dinner fixings save the coffee-Oreo-chocolate-fudge-brownie ice cream cake I was going to make. In each case, and for Calvin's, each other's, and the larger community's sake, we were all going to do Covid-19 rapid tests before gathering. But now that Calvin has been exposed to someone with Covid, the much-needed merrymaking is off the table for at least the next week.

While I understand there's a remote chance Calvin might have been exposed to a vaccinated person with a breakthrough infection, it remains hard not to be frustrated with the maskless and unvaccinated who are inundating our emergency rooms, hospitals and staff; patients are sleeping in the hallways of our local hospital's emergency department due to lack of beds from an influx of mainly-unvaccinated Covid patients. It's hard not to be angry at the reams of Covid mis- and disinformation circulating on social media and enriching bad actors. It's hard not to be aggravated at the conspiracy theorists and anti-vaxxers helping to exacerbate and prolong this public health crisis which has killed over 792,000 Americans and orphaned tens of thousands of children. It's hard to swallow arguments about so-called natural immunity in the face of a novel coronavirus, hard to stomach casual attitudes about getting infected and pretzel logic about achieving herd immunity by means of rampant contagion—both notions which neglect to consider the grave risks posed to the community at large, our healthcare infrastructure, our economy, and the most vulnerable of us. It's hard to tolerate the unwillingness to concede that variants of the virus such as Delta and Omicron—or worse—are more likely to emerge in unvaccinated populations, and that the unvaccinated are more prone to be vectors because they tend to stay sick longer and have worse symptoms than folks who are vaccinated.

With all this vexingly top of mind, I am grateful, if not amazed, that Calvin is so dutiful at wearing a mask despite the fact that he has no concept of why he should. Despite the fact that it gets covered in drool which makes it uncomfortable to wear and extra hard to breathe. Despite the fact it rubs his little chin raw. And nearly two years into this pandemic, it's mighty worrisome and maddening that, as the virus continues to mutate and surge, there are those who still act cavalierly, only thinking of themselves and seemingly unaware that, despite perhaps feeling healthy, the unmasked and/or unvaccinated can still harbor and spread the virus to others without knowing it. It's a twisted notion of freedom when that very freedom comes at the grave expense of others. No one is infallible. We don't live in a bubble. Wear a mask. Get vaccinated. Do it for your family, your neighbors and your nation.

Photo by Paul Barron

one night away

It was just one night away. Up the coast a bit. Out to an island linked to the mainland by a tiny bridge. Side by side, the house and cottage sprouted up from a granite shelf. Below us, the gaping mouth of the tidal river raged and swelled. It was as if we were on the banks of the ocean itself. The waves breaking on the rugged shore. The surf's rhythmic hushing, as if earth's lungs letting breaths out, could've rocked me to sleep standing up.

We were guests of beloveds who have a son a lot like ours. Before gathering, we each did a Covid rapid test; all of them came back negative. It was a year ago October when we had last vacationed together in adjacent lakeside cabins. Back then, because of the damn pandemic, we had worn masks and dined with wide-open doors and windows despite the frigid night. We sat on the porch and watched leaden clouds roll across the lake and release their burden upon us. We spotted jagged lightning bolts. Heard the sky split and crack and snarl above us. Listened to the rain pelt the cabin roofs. That night, Calvin seized.

Last Saturday, the weather felt reminiscent. A break in the rain let me escape to a nearby beach revealed by receding waters. I sunk my sneakers into piles of shells and pebbles, jumped and slipped like a kid from rock to kelp, luxuriating in my ten minutes of freedom. Smellie surveyed and sniffed her new surroundings. When it began to sprinkle, I bounded up the steep path and made it to the cottage just as the sky opened up surrendering its liquid treasure.

Soon after, Calvin got his evening meds. We laid him on the bottom bunk, shoved a couch against it and padded its wooden back with cushions so he wouldn't fall out and hurt himself. I was reminded of the indoor forts I made as a kid—for fun. It took him awhile to settle in the strange and darkened space. I wondered what he made of it.

Thankfully, the baby monitor's range was good enough to reach the main house, which meant the four of us could dine together. Michael went to check on our restless child twice. Laid him back down. Covered him back up. Finally, Calvin quieted. The table set, we devoured mouthfuls of roasted potatoes, fat lamb burgers and salad, raised and clinked our glasses of beer and red wine in tumblers. We celebrated anniversaries, mini vacations and simply being together. Just as we were contemplating dessert, I heard Calvin shriek and shudder. 

"It's the fucking seizure!" I said, as I flew from the table, darted out the back door and down the stone path to the cottage. It took a minute to reach my boy, having had to tug the couch away from the bed. When I did, his poor feet were kicking the paneling. As the spasms slackened, he had great trouble catching his breath. His soft tissue and or fluids fitfully blocked his airway. I did my best to keep him on his side so he wouldn't aspirate. His mouth had bled again. As always, it was upsetting.

It took the two of us. Michael and I clumsily lugged our toneless son to our big bed. We tucked a quilted bed pad under him. Shifted his body until he was centered with his head on the pillow. I crawled in next to him. With my hand on his heart, I fell asleep looking at a panorama including nearby silhouettes of four large evergreens. A shroud of mist had wrapped itself around their blackness. It was as if they were sentries watching over us. Soon after came the deluge. It lasted through the night, shifting in intensity. It was powerful, deafening, cleansing. Its magnitude dwarfed my son's fit and reminded me of nature's awesome indifference, its absence of judgement or discrimination. In that way it was comforting, helped me feel somehow grounded and hopeful, even amid the sorrow I felt for me and my kid.

staying safe

Calvin's final day of summer school was a sweltering one. When he got off of the bus, his mask was soaked with drool. Wiping his face as best I could with the corner of his bandana, I felt sorry for him; it must be near impossible to breathe through a saliva-soaked surgical mask, especially when it's ninety degrees.

As the world grapples with a runaway pandemic, our nation is approaching 640,000 deaths from Covid-19. To make matters worse, the more dangerous and contagious Delta variant is fueling a resurgence that is ravaging mostly unvaccinated communities, their healthcare facilities and workers. Regrettably, this predicament was unnecessary; some leaders haven't been aggressive enough implementing clear measures and messaging that could truly cut the virus off at the knees. Too many people still refuse to be vaccinated and/or wear masks, many of them led by mis- and disinformation they've gotten from certain politicians and rabbit-hole posts spread on social media. Tens—if not hundreds—of thousands of hospitalizations and deaths could have been prevented if certain so-called leaders hadn't downplayed and politicized the pandemic and things like wearing masks, and had we all been more deliberate and steadfast in protecting ourselves and our neighbors. It seems we're always playing catch-up with what is an ever-evolving and aggressive virus. Collectively, we haven't done what it takes to get ahead of it. We have been and continue to be reactive instead of proactive. This hot mess is of our own doing, though some folks get more credit than others for turning it into such a shitshow.

Despite these grave developments, there are those who remain staunchly skeptical about the need to get a Covid vaccine and/or wear a mask. Some are convinced that they are largely immune because of their youth, healthy diets and/or lifestyles, forgetting that in recent years they've been sick with the flu. Others aren't following the science about vaccines' overwhelming safety. Still others believe in wild and dangerous conspiracy theories, most of which can be easily debunked. Infectious disease experts explain that variants are more likely to emerge from the unvaccinated since the virus has more time to replicate and mutate in a body that doesn't have a vaccine in place to impede its progress. Also, unvaccinated people shed the virus longer than vaccinated ones whether symptomatic or not. Moreover, the Delta variant's viral load is 1000 times that of the Alpha strain. Unvaccinated people make it all the more possible for the emergence of an even more contagious, virulent and deadly variant which might prove resistant to vaccines. Then what?

My thoughts wander again to Calvin—my infant-toddler-teen whose seizures seem tugged into action by full moons, new moons, dips in barometric pressure, high humidity, and illness. Though all three of us are vaccinated, I worry about what might happen to us if we were to be infected by the Delta variant (the vaccines are highly effective in preventing severe illness, hospitalization and death, but we can still get infected.) I know what Covid can do to hearts, lungs, and brains, but the full, long-term implications of Covid are still unclear. I worry about Calvin; I have little doubt that some of his classmates this fall will attend school unvaccinated, not because they aren't old enough, but because of their parents' dubious stances on vaccines.

Please, for your neighbor's sake, mask up and get vaccinated.

embraces

just before three a.m. on sunday. embracing my son in the wake of his grand mal. his skin is warm and soft. his breathing is shallow. his limbs, lanky and long. in the dark, i reflect on our saturday, just before drifting off:

smelling sweet magnolia blossoms on my morning walk. making our first trip to the garden store since the pandemic's start. resisting calvin's desire to drop. proud of his half-successful efforts at keeping a mask on. taking a short backroads drive with a kid who is "off." exchanging smiles with the runner and the carhart man with his dogs. the sickly one is missing. i wonder if something is wrong. 

relishing strolls in the sunny backyard. paper-white, pink and purplish rhododendrons opening up. lamenting calvin's poor balance and grousing. delighting in a surprise visit from friends driving by. giving thanks for in-town living. the sun and warm breeze kissing my skin. calvin crosslegged in the grass trying to eat sticks.

sitting maskless in the garden with barbara and jens. little gabriel playing with barbecue tongs. sipping the chilled bubbly jens delivered last sunday. nibbling crispy sea salt and chocolate chip cookies just out of the oven. raising a glass to toast our covid vaccinations. barbara smiling in her pretty spring dress. her hair twisted up at the back of her head. the four of us chatting and laughing. feeding my boy blueberries one by one. blocking his efforts to stare at the sun. in-between bites, receiving his needy embraces. jens noting calvin's grieving and discontent. explaining to them that he's due for a fit.

gabriel cozying right up to michael. like petals, his dollface is slightly blushed. feeling his tiny hand in my palm. leading me to the compost pile. inspecting its rotting items with wonder and surprise. wishing i had such a child. grateful to call this cute, curious being my friend. missing his big brother nate. he's away for the weekend. such adorable people i can hardly stand it.

approaching five o'clock. time to say so long. deciding to hug barbara a week before my peak resistance (she got her first shot and recently tested negative.) amazed feeling her embrace. i linger in her arms not wanting to let go. my eyes begin to well and sting. after a bit, jens takes her place. we hug like some siblings. he kisses my head. i cry like a baby, as if we've never embraced. my yearlong hunger for this kind of connection finally, though not wholly, sated. basking in the healing power of dear friends' lovely embraces.

some kind of justice

As the mother and champion of an uncommon child—a boy who is nonverbal, legally blind, incontinent and suffers from a serious brain anomaly, cerebral palsy, developmental delay, autism and chronic epilepsy—I can describe instances of being neglected, unheard, misunderstood, dismissed, marginalized, patronized, and maligned by public servants, medical experts and society at large. I know the anguish of having a child who is sometimes treated as insignificant, undeserving, fringe, and in ways scorned and feared. I know what it feels like when others, whose care he is under—doctors, teachers, aides, nurses—don't hold themselves accountable when he gets hurt. I get angry, frustrated and indignant at what I see as injustice. Yet despite the struggles, heartaches and miseries of being Calvin's mother, I've never felt unsafe, vulnerable, discounted or mistrusted merely because of the color of my skin.

On Tuesday, I held my breath awaiting the verdict in the trial of George Floyd's modern-day lynching. Finally, I heard the words describing the homicidal defendant: Guilty. Guilty. Guilty. I exhaled and wept. I thought to myself, finally, some kind of justice, for another unconscionable offense amid generations of neglect, condemnation, oppression, abuse and murder of African Americans. 

Yet, Tuesday's guilty verdict doesn't mean the end of injustice, in the same way electing a Black president is not evidence that we are in a post-racial America.

Equity remains elusive for millions of Americans in this nation of so-called liberty and justice for all. Injustice and barbarism are the foundation of this nation's mostly-white wealth built from the ills of white supremacy, on stolen indigenous land, by generations of the enslavement, exploitation, abuse, terrorization, torture and murder of Black men, women and children. Today's mass incarceration of African Americans is a relic of slavery and Jim Crow, a way to continue profiting off of their bodies, to subjugate, disenfranchise, disempower. White supremacy and racism in this country are not superficial; like some tumors, they're pervasive and malignant, must be strangled or cut out.

Consider that many Black Americans are still fighting for: the right to vote; the right to live in decent neighborhoods and homes; lead-free water; proper healthcare; decent educations; affordable apartments; fair loans; decent jobs, raises, living wages; executive desks and seats in the boardroom; the right to move about freely; to safely drive, walk, jog, birdwatch, nap, barbecue and breathe; the right to take a knee in peaceful protest against their abuse and murder at the hands of vigilantes and the police. All because of the sound of their names and/or the color of their skin.

So, too, Black Americans are still fighting against being racially profiled and therefore unjustly suspected, stopped and frisked, pulled over and assailed, followed, stalked, interrogated, bullied, roughed up, falsely accused, arrested, jailed, unjustly sentenced, choked or shot before they even have a chance to state their case.

Today, we can breathe a sigh of relief for some kind of justice done in a Minneapolis courtroom last Tuesday, but the nation at large—with its toxic white supremacy infiltrating our military, police forces, conservative media, and halls of Congress, and its harmful racist policies and practices from healthcare and housing to law enforcement—is far from fulfilling its promise of liberty and justice for all.

Celebrating the guilty verdict in the trial of former Minneapolis police officer Derek Chauvin,in George Floyd Square on Tuesday.Credit...Victor J. Blue for The New York Times

surreal

Last Saturday morning, after having well hydrated myself, I received Pfizer vaccination number two. Other than developing a sore arm with a small bruise, I've felt fabulous. No other side effects whatsoever. As with so many things, I feel grateful and fortunate.

On my late-Sunday walk with Smellie, I went to visit my friend, Lauren, who lives on a busy corner just down the street. She and I stood in the filtered sunlight inspecting her emerging perennial garden. Although sturdy blades of green are pushing up, nothing is in bloom. Still, its potential to be gorgeous as ever is apparent. She then wanted to show me a tiny shade flower called pulmanaria. I followed Lauren through her small cottage with its screened-in porch, then down some steps into her sunken backyard. Walking through the cottage to the shady enclosure felt surreal; it was the first time in over a year I had stepped foot into someone else's private space. I was taken by surprise, my senses vibrating in a way that made me feel light and alive, and very aware of what I have been missing.

An hour later, I was back home preparing Calvin's evening seizure medications while watching him rest on the rug in the next room. Michael was busy making some delicious chicken soup. As usual, we were listening to music at a decent volume. When I closed the refrigerator door I saw a tall, handsome, neatly-bearded man standing in our mudroom. It was our dear buddy, Jens, wielding a gift bottle of champagne—something that is becoming a habit for him. At that very moment, we were meant to be gathering with him, Barbara and their two kids at a safe distance in our driveway. We were supposed to be celebrating our recent vaccinations, but Calvin's morning seizure and sluggish recovery had caused us to postpone. Jens hand-delivered the champagne anyway.

From the kitchen threshold, Jens stood and chatted with us for a bit—maskless; it had been a few weeks since he had received his J & J vaccine. I told him that I'd hug him after I reached maximum immunity on May first, warning him that he might want to wear body armor for the event. It felt surreal to have a friend in our house for the first time in over a year. It was a welcome sign of things to come.

Just as Jens left, the afterglow of the day's two surreal moments—spending time maskless and close to friends instead of at a distance—left me feeling giddy and full of hope, even though I didn't get to embrace them.

Today, some of the small-leaf rhododendrons are beginning to show their pinkish-purple blossoms. Blush magnolia buds are opening and showering their sweet aroma on passersby like me. Daffodils are dotting gardens, roadsides and woodlands. After a long Maine winter that led into a spring which still looks too much like November, and after a fifteen-month pandemic isolation, the opening world is feeling surreal. I'll take it.

Should be looking like this soon.

covid vaccinations!

With help from Calvin's pediatrician and the nurses at our local vaccination clinic, Calvin, Michael and I were given three leftover doses of the Pfizer Covid-19 vaccine last Friday evening. As usual when receiving vaccines, Calvin was a star, and even (mostly) kept his surgical masks on. As rain fell on our faces when leaving the clinic, I felt a wave of relief come over me.

I posted the good news on Facebook and received an outpouring of support from over 350 friends and strangers—many who follow my blog—plus over 100 loving comments. There was only one unknown person who voiced his opinion, using expletives to dis so-called Pharma poisons, told me not to be a lab rat and then wished me good luck. He went on to say something to the effect that only sheeple choose to be vaccinated. I told him not to be a troll and added:

sheeple also drive on the right side of the street for a reason.

If not for the efforts of several compassionate health professionals, Calvin would not have gotten his vaccine until sometime in late April. Now, all three of us will achieve maximum immunity by the first of May and, as a result, will be able to get back to at least a few of life's pleasures like hugs, face-to-face encounters, and having small dinner parties with other vaccinated people. For this I am most grateful.

anatomy of a pandemic

A year ago, I was home alone with Calvin for two-and-a-half weeks while my husband was in Paris taking photographs for a soon-to-be-published book of the city's parks. He was staying at his friends' apartment in the heart of the city while they were vacationing in Venice prior to joining him. Covid deaths in northern Italy were rising rapidly, though still in the hundreds if I remember correctly, and the fear of a global pandemic was becoming palpable. I imagined, with dread, Michael taking the Metro, crammed into cars with scores of other riders and lots of shared surfaces. I feared that his friends, Jonathan and Francoise, would return from Venice unwittingly carrying the virus with them, then pass it on to Michael who would bring it home to me and Calvin. I pleaded with him to get on a plane and come home early, but he was unable to find a flight. 

Michael's friends did not return to their Paris apartment until the day after Michael flew home. Though they never said as much, Michael guessed they purposefully avoided him so as not to risk putting our family, especially Calvin, in harm's way in case they were asymptomatic. Michael arrived home three days before the coronavirus was declared a pandemic. The last time we had any friends in our home was a Friday night exactly one year ago, March 13th. I stopped going grocery shopping and, as infection rates rose, I avoided the dentist and doctor. To put it simply, we have gone nowhere.

In recounting the events since then, it's hard for me to resist the urge to see it as a year of losses. Calvin has lost a year of attending school, seeing his teacher, aides and peers, and them seeing him. He's missed a year of going grocery shopping with me every day or two and lingering at his favorite spot: the meat case. He's lost a year of Saturdays and Sundays visiting our favorite bustling corner cafe. We lost a summer of lazy wanderings at agricultural fairs—one of the few enjoyable activities we can do with Calvin—taking in the sights, sounds and smells of farm animals, fresh hay, cotton candy and popcorn. Michael has lost nearly a year of communing in person with his college students. He has missed teaching them how to expose black and white film and how to make prints in a darkroom. He has missed the dynamism of in-person conversations with them about how to see and approach the world with greater clarity, curiosity, humility and gratitude. We missed our tradition of having both classes of students over for dinner at the end of the semester. He missed attending an artist residency in Wyoming. I've missed meeting and befriending his students, which I lament deeply. I've lost a year of relative freedom to roam where I want, belly up to the bar with friends, go on dates with my husband, see movies in theaters, walk on the beach, host dinner parties, or visit New York and the West Coast. I know I am not alone.

Despite these losses, I'm grateful for all we have, and I'm particularly cognizant of those fortunes at a time when so many Americans are needlessly suffering (it didn't have to get this bad.) My husband's job makes it possible for me to stay home with Calvin full-time. We eat well, enjoy our creature comforts, are surrounded and supported by an amazing network of friends, have health insurance, and are well. We don't have to worry about where our next mortgage payment is going to come from or if we'll be evicted. We don't fret about how we'll afford to heat the house, feed our family, pay our healthcare bills. We don't lie awake at night wondering if or when we might find work again. We don't angst about contracting the virus since Michael is able to work remotely and we have the space to stay safely distant from others.

And yet, I cannot shake the feeling that this pandemic year has been one of loss. I also wonder what Calvin makes of his year in isolation; he has seen virtually no one besides me, Michael and Smellie for months on end, and has spent the entire winter indoors. If the huge smile on his face which appeared when we finally ventured into a thawed-out garden is any indication, I wager he has felt loss and deprivation on some level, if only viscerally.

As much as the last year has felt like one of loss, however, it has also been one of gifts. Like no other time in my memory, this isolation has prompted the distillation of thoughts, scenes and people into their essences. In effect, the pandemic has moved me: to further regard and appreciate the quality of light in a certain room or month or scene or time of day; to contemplate light years and the sheer distance of a star; to marvel at a stink bug's travel in the days before her death; to consider and bask in the simple existence of four beings in one household; to notice the daily nuance in spectacular and mundane landscapes; to see better the smile in people's eyes; to study and note the incremental changes in a self, a husband, a child; to see the maskless faces of strangers become familiar, even beloved; to feel the subtle play between anguish and hope; to understand and witness the many worlds reflected in pools and eyes as mirrors and windows.

I've also come to understand what I am physically and emotionally capable of doing: being my developmentally disabled, nonverbal, legally blind, incontinent, autistic, seizure-racked son's sole daytime companion and keeper for an entire year during a pandemic. Though laden with more than its share of angst, sorrow and frustration, and as strange as it might sound even to myself, I consider this prolonged and uninterrupted time with him a gift.

Bois de Boulogne, by Michael Kolster

long road ahead

Monday:

To look at my son is to think he is on death's door. Listless. Wan. Dark circles under his eyes. Sleeping with lids half open. Seizures three nights in a row. Two of them grand mals. A focal seizure an hour past midnight. His lips and fingers turn blue. It scares me. Because of the double grand mals and the earliness of this one, I make a rare move to give him Diastat—rectal Valium. It works to stop the cluster.

In bed next to him, his breathing nearly imperceptible because of the benzodiazepine, I worry: What if he were to get Covid-19? I think about the vaccine. I resent the fact that our governor switched to an aged-based rollout. The rationale is that age is among the strongest predictors of hospitalization and death from Covid. But under a certain age, that argument doesn't pass muster.

In some states, landscapers and massage therapists became eligible for vaccines before people who, for instance, are immunocompromised. People with chronic conditions like Calvin are three times more likely to get severe illness or die from Covid than others. And yet they are neglected, as if they are somehow undeserving, unworthy. I think about the anti-maskers who cling to their myth of rugged individualism and bootstrap theory, insisting we should all be personally responsible for avoiding illness (as if we aren't already doing everything possible with that singular goal in mind.) Meanwhile, they parade their maskless faces in stores and restaurants, recklessly endangering workers and patrons because of some twisted notion of freedom. No man is an island, especially during a viral pandemic. Everyone needs to do their part to suppress its spread. Don't we drive on the right side of the road to keep ourselves and each other safe from harm? Does wearing seatbelts mean we're "sheeple"? Why are some Americans so unwilling to embrace even the smallest gesture to help keep their neighbor and community safe from harm? The conceit and sense of entitlement is stunning.

I understand that an age-based rollout is more efficient and will get everyone vaccinated in a shorter period of time, but that doesn't negate the sense that some lives are seen as more expendable than others. You can't debate your way around it; an age-based rollout means healthy thirty-, forty- or fifty-year-olds will get vaccinated well before younger people with type-1 diabetes, cystic fibrosis, cancer or neurological disorders. At the current vaccination rate in Maine, Calvin won't get his until July. In the meantime, he'll likely remain at home with me, unable to attend school or come with me to the grocery store without risking exposure. In other words, for families like ours, there's still a very long road ahead.

mundane

These four walls are closing in. We move from couch to bathroom to bedroom to kitchen and back again. The repetitiveness of shadowing my kid—it feels the same with my writing. Returning to the same old themes and places. The word that comes to mind is mundane.

Because of the pandemic, the beloved fields near our home are, from sunrise to sunset, temporarily closed to the public. The trails around them are not off limits, but remain treacherous. Daily temperatures are still too low to melt rock-hard ice, especially in shady places. Instead, I wander along sanded asphalt, skate across frozen lakes formed in the low spots of salt-blanched sidewalks. After dawn and at dusk, when streets are empty, I stroll down their centers, which feels slightly freeing. Still, the dog and I are longing to roam wild in wide-open and unfrozen spaces.

Regrettably, the vaccine rollout in Maine is now mostly age-based, so my son won't get vaccinated until summer. The governor's decision to bypass people with high-risk medical conditions is troubling. It means we'll be keeping Calvin home from school longer than we ever thought possible. Nearly a year has passed of having him home alone with me. It's been a burden on my mind, body and spirit; the only person with whom I spend endless daytimes can't speak, and his needs are unceasing. I'm aching to connect, commune, relate with other people. It's in the very nature of my being. I know I'm not alone in that feeling.

Thankfully, I receive a rare visitor. One of Michael's former students drove up from Portland just to see me. We sit outside, twelve feet apart on the glacier that is our back yard. I place my plastic chair where I can see Calvin in the house, spinning in his jumper. Hector's thick, bleached, sun-gold hair is a welcome shock of color against Maine's white winter. To gaze upon a familiar, maskless face for more than a moment feels magnificent. In the cold, we speak of adventure and of heartache, of our vintage Mustangs and of new beginnings. We see each other smile. We laugh together. Upon his leaving, we give each other virtual hugs and I tell him that I love him. He'll be moving away in a few months. I'll miss his visits.

Back inside I get my son out of his jumper. He leads me to the green couch, his favorite spot to spend less than one minute in my lap before getting off and motoring in circles. That word comes to mind again—mundane. But then I look up it up in the thesaurus for more context and see its second definition—earthly, worldly, terrestrial, temporal, sensual—and I feel grounded, renewed, somehow unfettered.

One such day two years ago.

an open letter to governor janet mills re: covid vaccines

Dear Governor Mills,

I've heard it said that a society—government, nation—can be judged by how it treats its most vulnerable.

My seventeen-year-old son, Calvin, suffers from multiple physical and developmental disabilities including cerebral palsy and intractable epilepsy. He is nonverbal, legally blind, incontinent and can do little to nothing by himself. His chronic epilepsy means his risk of serious illness or death from Covid-19 is three times greater than the general population. Despite his limitations, his life is precious.

Currently, it is unclear if children like Calvin are eligible to receive a Covid-19 vaccination as part of Maine's 1b vaccination phase. Nowhere on Maine's vaccine rollout plan are children with high-risk medical conditions mentioned. Though Calvin is old enough to receive the Pfizer vaccine, only adults with high-risk conditions are listed in phase 1b. Children age 16 and up are listed as the last to receive the vaccine as part of phase 2, which isn't expected to begin until June. 

Calvin cannot grasp abstractions, does not understand the existence or dangers of a pandemic and will not keep a mask on his face. He constantly touches and mouths surfaces and puts his fingers in his mouth with frequency. For these reasons we have kept him home from school since last March. Due to his intellectual deficits and the side effects of epilepsy medication which cause him to be restless, he is not capable of attending to a screen and therefore is unable to participate in remote schooling. I have no doubt that there are likely scores of children in Maine who fit this profile. Fortunately, I am able to take care of our son all day every day while my husband is at work, though it has been physically and emotionally challenging. 

Considering the fact that vaccines are not 100% effective and experts have not determined if the virus can be shed by vaccinated people, it is critical that vulnerable kids like Calvin and their family members get vaccinated as soon as possible. Needless to say, if Calvin were to get sick it would be devastating for our family. Moreover, if my husband and/or I were to get seriously ill or die, it could prove catastrophic in terms of providing for Calvin's care since he requires twenty-four hours a day of hands-on supervision and assistance with all activities of daily living. In other words, caring for Calvin while maintaining a household requires both of us.

If Maine is to pass the moral test of caring for its most vulnerable, it is imperative that children age 16 and up with high-risk medical conditions be added to the phase 1b Covid-19 vaccine rollout without delay.

To learn more about Calvin, I invite you to read my blog, which Dora Anne Mills, Senator Angus King and State Senator Mattie Daughtry follow.

Thank you in advance for your consideration,

Christy Shake

An abridged version of this letter was sent directly to Governor Mills.

Calvin with one of his favorite toys.

perfect storms

Strange pandemic days. We walk in circles at home. Drive around the same back roads. I spoon-feed and potty train my teenage boy. With the latter, he's doing surprisingly well. I never thought him capable. Perhaps I need more faith in him, and in my own abilities as his coach. They say if you can imagine something, it's possible. I'd like to think so.

This is the time of year—if windless, sunny and bundled-up—two degrees feels hardly worse than thirty. I'm proof anyone can get accustomed to the cold. Michael runs 5Ks even when the mercury falls below zero. In these parts, a lot of people do. If anything, humans are resilient. Remembering that gives me hope.

On daily drives this winter, I see hawks perched on telephone poles. They search for prey in fields of grass and snow. I stop for flocks of wild turkeys strutting across the road. I've spotted bald eagles and crimson cardinals. The other night I banged the hell out of the bedroom wall trying to shoo some sort of nesting vermin. In this pandemic, squirrels have manifestly taken over the neighborhood.

Yesterday, I baked some cookies. First batch since Woody's death last summer. They came out perfect—crispy, chewy, salty, sweet. Molasses, sea salt and dark chocolate are my secret. If he were still alive, I'd have brought him a handful in a napkin or piece of foil. Like last winter, I'd be on the phone with him standing in his driveway. Pandemic style, we'd be peering at each other through his kitchen window. We'd talk of weather warm enough for drinking whiskey on his porch together. I miss him so.

We're anxious for the vaccine's arrival. It might mean sending Calvin back to school. Why kids with high-risk medical conditions like Calvin can't yet get vaccinated is beyond me. He can't keep a mask on, which is why we mostly stay at home. He's three times more likely to die from Covid than most others. Please wear your masks, people.

This storm is meant to drop a foot of snow. One car is on the fritz. Can't risk driving it in case it stalls. Michael took the other to the studio. The snow is too deep for Calvin to trudge through it. He can't build a snowman. Can't catch snowflakes on his tongue. Can't make snow angels. So, we're stuck inside at home. Anyway, it's nasty out. Wind and freezing rain coming down in sheets. At least he isn't seizing ... yet; nor'easters in pandemics make for perfect storms.

herculean

i'm about at the end of my tether. tapped out. at my wit's end. i'm burnt to a crisp. this pandemic thing—which didn't have to be as bad as it is, with over 400,000 americans dead—is doing me in. and i know i am not the only one. having said that—and before i continue—i must express my gratitude and acknowledge my privilege that my husband still has a paying job, we're comfortable and well fed, and none of our friends or family members, even the ones who got covid, are dead.

still, time spent with my son while he's been home from school since last march has been a struggle, especially of late, probably because of winter and because the stress is cumulative; nearly seventeen years of spoon-feeding and changing diapers and pulling up his covers in the middle of the night can get to a person, not to mention his seizures and behaviors associated with the antiepileptic drugs he takes. days are mind-numbingly monotonous. the weather doesn't always cooperate for our walks outside in the garden and back meadow. he's so demanding, intense and gropey, if that is even a word. sometimes he shrieks and grouses and cackles so much i want to scream. all too often i give in to the emotion.

i continue to wonder how the hell i am going to do this for the rest of my life, while at the same time cringing at the notion of strangers taking care of him, what with the high turnover in most group homes. neither seems like a good solution. both give me pause, thinking of a way out of this conundrum.

i sometimes find myself dreaming of being childless and single, able to do whatever i please and go wherever i want to go whenever i want to. i know i am not alone. i think of my mother and wonder how she cooked and cleaned and shopped and laundered for six kids and my father. herculean, really. but we're all doing it in some form or other during this pandemic.

different vistas

Driving along winding roads, I reach behind the passenger seat. My son grabs my hand. His is soft and small. Mine, thin-skinned and wrinkled. When I tickle his fingers he smiles, head back, mouth open. Nearly seventeen years ago those fingers were translucent, adorned with tissue-thin nails smaller than seeds on a bagel. Between his teeth he works on the floppy ear of a crocheted rabbit. By now, it's sopping. He has taken off one shoe and one sock, chewed on them too.

We drive like this for the better part of an hour on the same familiar roads. From behind the wheel I feed him blueberries, halves of grapes, segments of clementines and chunks of cheese and chicken sausage. I watch him in the rear view mirror to ensure he chews each piece well. We stop every so often so I can photograph panoramas of the fields, the pines, the water beyond. I wish I could pull to the shoulder, abandon the car, escape my son and even the dog and get lost in the meadows by myself for hours. Maybe I'd lie in the snow and study the clouds. Perhaps I'd get to the the water's edge, perch myself on a rock and melt into the vista.

It has been nearly ten months of mostly back-to-back days with Calvin while Michael is working. Some days can be as long as nine hours. How many more months will this be our routine? When will we be able to get the vaccine? Despite certain hardships, frustrations and limitations, we are keeping our heads above water. Michael has a paying job so I don't have to work (outside of caring for our son.) Michael does all of the shopping and cooking and most of the laundry. Calvin both buouys and sinks me with his want, and so I bob. Last month, he went twenty-two days without any seizures. Then one came six days later and two six days after that—a different kind of vista. Still, we have so much to be grateful for—shelter, heat, clothes, food, so many creature comforts.

On the drive, I look out at the silvery sky and pines dusted with snow and think about my pen pal who is on death row. I doubt he's seen a tree in years. I wonder what his vista is. In letters, he tells me he prays for Calvin. He says he is busy despite spending twenty-three hours a day in a tiny cell. He speaks of waking up every morning in Hell. He mentions how cold it is until they stretch plastic over the windows. He says he's seen more people die in prison than in the Freeworld. He fights to stay strong. He writes me lines from a favorite song.

My heart been broke so many times, I don't know what to believe. Granny said it's my fault, it's my fault I wear my heart on my sleeve. So I think it's best I put my heart on ice, heart on ice because I can't breathe. I'm gone put my heart on ice, give you the best of me.

On the drive home, I think of my childhood friend and neighbor whose autistic son, the twin of a neuro-typical sister, died unexpectedly last summer. Like Calvin, he was nonverbal and loved everyone unconditionally. Then, I think about my friend's little girl, so much like Calvin, seizures and all, who died last March from complications of Covid. I think about my friend's daughter who overdosed on opioids. Why do I know so many parents of supple children—Lily, Rose, Rainier, Kari, Jennifer, Katie, Kellie, Mike, Ross, Mikki, Martin, Cyndimae, Charlotte, August, Arnd, Kevin, Ronan, Elisef, Andrew—who perished?

Coming up a rise to a bend in the road, a gorgeous and familiar view emerges: a rolling hillside above a salt marsh wading into the water. The sun, shrouded by clouds, makes the whole sky glow. As we round the bend, the vista disappears behind suburban homes. I wonder who lives there. Wonder if they have kids. I wonder how it feels to lose a child—to illness, to accident, to epilepsy, to drugs, to suicide, to prison. Though the vista, now behind us, is a clear shot from the car, I wonder if Calvin sees it, can make sense of it, recalls it as one we've passed by nearly every day in this pandemic. I wonder what kinds of vistas—if any—are ones he loves. I will never know.

a different vista

skin in the game

Recently, I saw a meme asserting that the reason some people don't believe Covid-19 and racism are real or serious is because neither has affected them. I concur. As the mother of a significantly disabled and chronically ill child, I experience a similar dynamic: other's underestimation, denial or lack of understanding and empathy regarding the challenges we face in navigating and enduring the complex and often sorry world of our child. 

While walking Smellie at the fields the other day I heard a twelve-minute segment on NPR about a disabled woman's struggle to survive in a hospital where the doctors and nurses repeatedly dismissed the notion of her quality of life because she couldn't walk or talk. In doing so, they withheld critical medical care which led to her death. She was only 36. Listening to the story, I was reminded of how Michael and I sometimes feel when we attempt to advocate for our nonverbal, legally blind, autistic, incontinent, seizure-prone, intellectually and physically disabled, utterly sweet and defenseless child who can do virtually nothing by himself. Despite Calvin's struggles, he has a certain indisputable quality of life, and he touches people in meaningful ways. In other words, his life matters. And as his best champions who know him far better than anyone, so does our advocacy for him.

Beginning when Calvin was two, we met with neurologists whose virtuous aim was to eliminate his seizures, albeit seemingly at any cost. To achieve their goal, they prescribed highly addictive benzodiazepines and increased those and other drugs to debilitatingly and sometimes dangerously high doses, usually downplaying or denying the side effects caused by the drugs. That these physicians did not have children of their own suffering from medically refractory epilepsy allowed them to be somewhat divorced from grasping the drugs' heinous side effects. This led to what often felt to us like the cavalier prescribing of the medications. These doctors couldn't know the anguish of seeing their own precious child go berserk, become a zombie, careen, shriek, cry, stumble, regress, wither away, explode, panic, perseverate. In other words, their guidance was worthy of question because they had no skin in the game, (which is not to say their advice should have been utterly disregarded.)

Some of the best treatment we've received—and to be fair, we have gotten plenty from humble specialists who are the most sympathetic listeners—was from two emergency room physicians whose eight-year-old daughter had epilepsy. Calvin was eleven that time he was admitted to the ER after a cluster of seizures which weren't responding to emergency medication. Immediately upon discussing a plan to alleviate the spate of fits, the physicians, who worked consecutive shifts, let us take the helm. They allowed us to administer Calvin's cannabis oil to him, something that most hospitals prohibit. Their empathy was palpable. Their ceding to our strategies was clear and deliberate. Because of their daughter, they had skin in the game and could empathize with our situation and responded accordingly.

When Calvin was an infant-toddler, I was upset by a magazine article about a mother of healthy sextuplets. When I expressed my resentment, one of Calvin's in-home nurses responded, "You're not over that yet?" Apparently, my lingering grief, sense of loss and despair over having a disabled, feeble, seizure-racked child was unreasonable. Also early on, during some of Calvin's demanding in-home therapy sessions, various professionals told me that Calvin, my tiny, limp premie with his incomplete brain, would cry in order to manipulate me into picking him up. Upon hearing this, my heart began to pound. The truth was, my fragile child was in distress and simply couldn't cope with the colossal tasks being asked of him. It hurt me that they couldn't understand.

Some years ago, I read that the cells of a fetus remain inside their mother's body—her tissues and bloodstream—for decades. I reason this might account for what is commonly referred to as the maternal bond, and might explain why the gut instincts of mothers seem so often right.

I recall too many times I wish I'd followed my gut rather than various specialists' recommendations. As one with the most skin in the game (besides Calvin), I should have patently refused to put him on that first benzodiazepine when he was three. I should have taken him off of the rigorous ketogenic diet when it clearly wasn't working. I should have questioned allowing a painful and bloody intubation when it didn't seem necessary; I should have been more assertive when asking for the best expert to insert Calvin's IV before he lapsed into a forty-five minute seizure, one that I had sensed was looming despite the doctors' and nurses' skepticism. I should have refused the piling-on of medications and the ratcheting-up of doses to harmful levels.

But, as with racism and at some level, Covid-19, there's an element of society that tells us things are not as bad as they seem. We're told everything will be okay. We're led to believe we are imagining or exaggerating things. We're taught to doubt ourselves, and to unquestionably trust and comply with authority. We're sold a bill of goods that experts undoubtably know our children better than we do. We are judged—for how we deal or don't deal with adversity, for our assertiveness, our demands, our expectations, our protests, our impatience, our tack—by people who have no skin in the game and by those incapable of fully understanding—despite thinking they do—what it's like to live with, love, raise, advocate and fear for a disabled, chronically ill child ... or a nonverbal loved one in the hospital with suspected Covid ... or a mother of a child with black skin.

February, 2015, Photo by Michael Kolster