4.22.2021

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

4.20.2021

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.

4.17.2021

blasts from the past in the not-too-distant future (fully vaxed!)

real celebrations. byobs. potlucks. barbecues. standing elbow to elbow. face to face. cheek to cheek. long and frequent embraces. diminishing situational diameters. gatherings longer than an hour and with more than four people. seeing maskless faces. indoor time with my peeps. eating in the screen porch. visiting with neighbors on the same side of the street. making new friends. getting help to take care of calvin. visions of sending him back to school. working in the garden without having to mind calvin. a house full of people. a house to myself. visiting friends' homes. sharing the sidewalk. sitting in close circles around the fire pit, dining table or wood stove. roaming the fields. biking or running the roads. maybe one day going to movies and restaurants. maybe bellying up to the bar with my chickies. sound sleep. deep dreams. carefree thoughts. easy breathing.

From eleven years ago, but you get the idea. photo by Timothy Diehl

4.14.2021

the still waters of yesterday

today, i twice drove out to simpson's point to unwind. the still waters of yesterday had been replaced by endless tiny whitecaps lapping the shore. i cut the engine. with the window down and my kid in the backseat chewing his shoe, i simply sat with the sun in my lap and listened to the world.

to be honest, this yearlong stint taking care of calvin all day every day is taking its toll on me. at times, he's the sweetest child that exists. at others, he totally grates on my nerves. it doesn't help that i don't always know what ails him. time spent with him is at once fulfilling and taxing. stressful and relaxing. unnerving and mundane in impossibly beautiful and tragic ways.

after seventeen years, still i sit with my grief. though mostly upbeat, i'm reminded of my loss on a daily basis. today, i saw a mother in a front yard making a chain of big, iridescent bubbles for her toddler to chase. i watched two boys on the sidewalk bouncing a basketball between them. i saw college students rolling by on boards and four-wheeled skates—all things calvin will never be able to undertake.

i'm mostly home still raising a seventeen-year-old baby—spoon-feeding, changing diapers, cradling. the grief, however, isn't nearly as debilitating as it used to be. i no longer double over on the street. i no longer buckle—sobbing—between friends holding me up as i drag my feet. i no longer weep while swimming, tasting tears, sweat, soda ash and chlorine. but the loss of not having had a healthy child stays with me. like rings inside a tree. or crystals inside a geode. it's enduring. it's in the silent hours of a child who can't speak. it's in the way he sometimes moans and growls, shrieks and seizes. it's in the endless days' emptiness. the broken promises of parenthood. the conspicuous lack of a child's questions—about math, life, the moon and stars, love and justice. the loss persists in the inability of knowing his hopes, dreads and dreams. it's in the absence of his friendships, sweethearts, heartbreaks, epiphanies, all of which would be full of meaning and feeling, and not just for him.

sometimes, i find myself pining for the still waters of yesterday. of the time when i was childfree. perhaps back when i was single. of the days when i was still climbing trees. but then, as i watch the waves' unceasing action against the rocky shore, i realize how life now—with my messed-up kid—is ridiculously rich with roller coaster loops and dives and turns, breathtaking and rare perspectives, and spectacular, transformative waves, the likes of which still waters might be envious. 

The still waters of yesterday

4.12.2021

giving it another go (cbd oil)

calvin went six days between grand mals. not nearly long enough. maybe it's the infection. maybe it's the antibiotic. maybe it's just the fucking epilepsy; (sorry for the expletive, ma, but seriously.) six to eight grand mals per month is too damn many. years ago he'd have just one a month. back when he was little. back when he was on high doses of three mind-altering antiepieptic drugs. back when we had to peel him off the ceiling. back when he couldn't sleep. nearly stopped eating. couldn't walk without falling. had to wear a safety harness. back when the drugs impaired his already lagging progress and caused eternal restlessness:

akathisia: [pronounced: [ak-ah-thÄ­´zhah] noun | 1. a state of agitation, distress, and restlessness that is an occasional side-effect of antipsychotic and antidepressant [and antiepileptic] drugs [and/or their withdrawal, especially benzodiazepines.] 2. a movement disorder characterized by a feeling of inner restlessness and a compelling need or urge to be in constant movement [despite fatigue.] people with akathisia experience inner restlessness which causes them to fidget, rock, pace and panic [and sometimes end their life as a result.]

the seizures keep coming in clusters over two or more consecutive days. he almost never seems to suffer isolated ones. it's why his monthly numbers are so high. last night we went back to trying harmony cbd cannabis oil. on calvin's first go three years ago, he went forty days with no grand mals. sadly, he never regained the same control. so we suspended it. but since the pharmaceuticals have so many wicked side effects, we're giving cbd another go. he hasn't had a second seizure since yesterday morning; perhaps that's promising. too soon to know. crossing fingers. knocking on wood.

Back when, photo by Michael Kolster

4.07.2021

snapshots

After our son's first grand mal of the night, I laid in bed with him. In my head, I began to write my blog. Like our daily car rides, my thoughts looped around. Words took different turns. Images previously seen clicked into narrative landscapes—physical, emotional, virtual. Eventually, I nodded off to sleep.

Of late, Calvin has been too ill to take car rides daily. Some sort of infection—urinary tract, bladder or kidney—means we haven't been out much, or we've driven short loops close to home in case he has another daytime seizure. I lament the days in which I can't travel the backroads. I so miss seeing the gorgeous vistas, the wide open spaces, the big skies, my people: the Carhart man with his three willful dogs; the pair of women with similar haircuts and purple jackets; the tall man with his cute, wiry mutt; the black-clad couple who live at the mouth of the inlet; the bikers and joggers of every age and shape; the marathon runner; even the skinny old hippy chick with the puffy coat, nappy hat, mauve stockings, hiking shoes and poles who looks at me with a bit of suspicion as if she owns the road. They all unwittingly buoy me through this lonesome pandemic. Each sighting, smile, wave and nod somehow lifts me, makes me forget about stresses and worries, Calvin's seizures and our limitations. Without these people, I'd be feeling altogether differently; in other words, not as good. These have been some long-ass, monotonous days—over a year of them—caring for a boy who can do nothing by or for himself.

But I do find respite. Ben came up from Boston Sunday. With Calvin secure inside the house where we could check on him frequently, the three of us sat safely distant in the sunny driveway. Ben's eyes shined bluer and brighter than I remember, at times exuding understanding and compassion. A former student of Michael's, we talked about photography and discussed the art of mindfulness—of finding deeper meaning and beauty in the mundane; with that I have a lot of practice. He asked what kind of relationship Calvin has with language. I was touched by his curiosity and depth of thought.

Ben told us he brings along Polaroid snapshots of his friends when he travels for business. Lays them out in lonely hotel rooms where he can see them. It's as if his people are there in person. It helps him pass the weeks and months away from those he loves. I imagine he might feel as if they're seeing him too, which must be validating in a pandemic for those seen by few.

On Monday, after starting an antibiotic, Calvin seemed to be feeling better. So we took a longer drive down a favorite road to a boat launch eight miles south or so. On the drive out and back we passed the runner. His pace is swift and fluid, as if he never touches down. I'm reminded of the winged feet of Mercury, god of travel. Like when I swim or tread water, it seems he can run forever. Though I reckon he goes quite far, his face remains placid. His endeavor appears effortless. So as not to startle him, in passing I put my hand out the open window hoping he might see me waving as we passed by.

Though we'd already traveled a distance, Calvin remained happy in the backseat playing with his toes. The songs on the radio—some familiar, others newer—soothed me. I chose to take two more favorite loops. Nearing a quiet corner where a sloping neighborhood street meets another road, again I spotted the runner. Well before the stop I paused to give him space—for mind and body. Flying past, he waved a hand in my direction. A sense of joy and ease washed over me. As if evidence of my own pandemic existence, I had been seen and, for a moment, it felt as if he carried me along.

In taking a left turn homeward, I was made to pass the runner one last time. I hesitated to catch his gaze for fear of interfering. As his form receded in the frame of rearview mirror, I was reminded of Ben's snapshots, and of mindfulness and gratitude. I mused: mental pictures of these backroads travelers, a couple of whom have become in ways beloved, are like snapshots in my pocket. I keep them in my thoughts, forever curious of their struggles, passions, hopes and burdens. Not unlike my dearest friends, I carry memories of their forms and faces throughout my days and in-between seeing them in person, like Ben's Polaroids displayed on hotel tables. 

At 3:00 a.m., in the wake of Calvin's second grand mal, he suffered some miserable agitation. After having done all we could to aid and comfort him, I heard the train roll through. Hearing its whistle and rumble calmed me. I imagined taking it to its final destination, wherever that might be. I thought again about my backroads folks. I wondered—not so humbly—if they ever imagine, however fleetingly, my travels through landscapes, time, emotions. I wonder if I've become in some strange ways meaningful to them like they've become to me. Like a stack of snapshots, do impressions of this smiling stranger behind the wheel endure—not as a burden, but as a buoy? Or are my musings more a measure of some real pandemic loneliness and fatigue?

Photo by Ben Painter

4.05.2021

readers write

The sentiments I've received from readers—some from years ago, others more recent—never cease to amaze and nourish me. I send my deepest gratitude to you, dear readers. You are in great part what keeps me afloat. Whether stranger, acquaintance or loved one, you have no idea how much I'd like to hear from you. You quench my thirst for connection in this long and lonely pandemic lockdown.

None of my marathon efforts will ever match yours. Unfathomable efforts by you for so long and with such love, strength and dedication. — Joanie

Wishing you all the best and for Calvin to be well. He is so sweet and he deserves a good and painless life. That is one of my wishes for him and of course you. — Caron

I’m writing an ineloquent email to say that your words touched me deeply and I am thinking of you and Michael and Calvin, and about how time passes and things change and don’t. — Pamela

Thanks for the courage to bare your soul. Such unvarnished truths. And through it all you find the specks of gold. Thank you for you. — David

The difference between the first journey before sunrise and the one you are on now, is that it was a shared experience to which we could all relate ... now we can only see through your eyes and feel from the depths of your heart and try to love you through it from a distance! Know that many of us are swimming along beside you each day, hoping to keep you afloat! XO — Betsy

You mention your body: I think of your spirit. Your soul. Your intrepid resilience and gutsy presence. You are love, and to sit with its awesome glow (undeclared by sincerely-modest you, yet clear to the reader) is a privilege and gift. — Peter

I feel a deep, almost painful love for you and for Calvin. My insides wring out every time I read your writing and experience your conviction and strength. I feel it. We all feel it. And with the strength of that compassion and the collective outcry of empathy, which pours out of your words, I truly believe you can move mountains. — Kaila-Ruth

Yesterday at the end of the movie when your phone rang and you sprang from a boulder like a Momma lion (to quote Joni Mitchell) I realized again how close disaster lives to you, that any phone call, or some little bit of unusual behavior from Calvin and the dangerous dark specter of epilepsy is right there looming over you. But you are fearless and I am full of hope that the right tincture is going to become available soon and it's going to help. xoxo — Lauren 

I don't have a special needs child, so I mean this in the very best way possible, but reading about your troubles makes me grateful for mine. Granted, I don't like my own troubles either, but yours put mine into perspective. Some days, I don't feel like it, but because of you, I take another deep breath, and continue to put one foot in front of the other. — Anonymous

If Calvin could somehow choose anyone in the world to be his mom, there is no one else on the face of this entire blue marble that would be a better nurse, a more conscientious caregiver, a more fierce and committed advocate, or simply a more profoundly loving and patient mom than the one he has tonight. And I honestly think he knows that. You should probably also know that doing what you do also helps some of the rest of us find something a little better inside ourselves. So thanks. — Jim

Wish I were there to bring up inappropriate topics at the dinner table and make you laugh ... for just a minute or two. Thinking of you here in SF. — John

Oh, dear. Time to stop lurking and 'fess up—I am listening too, from Zurich. I am the mom of three n/t (neurotypical) kids and here I am, fascinated, terrified, moved, by what you write. My kids see me reading and I explain to them why and what I am reading ... so we are all listening. — Danielle

Even though you may feel alone, you are not. I get it. I understand your words. I am here for you any time, any day. 
— Karen

I'm listening from far away and feeling. ciao — Federica

From Beyond Beautiful: One Thousand Love Letters, brainchild, curation and drawings by Peter Bruun, text by Christy Shake, photos by Michael Kolster.

4.01.2021

indifference

stuck at home nursing a stiff, achy back and a sick, feverish kid. outside the earth is parched. too little spring rain for trees and shrubs to drink. watching bits of a minneapolis murder trial while calvin sleeps.

seeing video of a white cop in a blue uniform pressing his knee into the neck of a black american for nine minutes sickens me. the black man cries out. says he can't breathe. what i can only imagine to be his urine streams from under a police vehicle, like when people seize. maybe it's the car's condensation. still, the fact that i even wonder matters.

bystanders plead with the officers to show mercy, but none of them is moved to acquiesce or aid george floyd, the man in distress. he is succumbing to their pressure. they remain an unmovable, emotionless threat. the white cop leans hard into the black american as if he doesn't matter. the victim's bloody face is ground into the asphalt, arms wrested, the intolerable burden of three big men leaning on his back and legs, his chest compressed. the knee in his neck shimmied into prime position for eternal silencing. the white cop indifferent to the pleas of his victim. contemptuous of onlookers. hands casually in his pockets as if jangling spare change. passing the time. as if nothing he does matters. callous as hell.

as with all things just and unjust, i think of my little boy calvin; he has no voice, is misunderstood and sometimes swept to the margins. goes unseen by many who avert their gaze or pretend he doesn't exist—to them he doesn't matter. he's different. easy for others to neglect. not in a position to help or defend himself. could easily get knelt on in the wrong circumstance. this makes me think of the boys and young men somewhat similar to calvin who have died under the weight and watch of those in uniform. autistic. misjudged. misunderstood. misapprehended. falsely feared. wrongly accused. bullied into final submission. insignificant. in some realms—because of their difference—they are thought of as mattering less and are treated as such. 

this black american—and too many like him—was deprived of blood to his brain and oxygen to breathe, vitals denied by a public servant paid and sworn to protect. in broad daylight. witnessed by other beseeching human beings. captured on cell phone video. white mass shooters and dogs fair better.

words provoked by the bully in blue come to me: 

mister charlie. monster. bigot. predator. inept. unjust. lynching. white supremacy. relics. vigilantism. corporeal punishment. systemic racism. apathy. grievance. abuse. hatred. contempt. ignorance. othering. difference. indifference.

the last five words make me consider calvin again. mostly, though, i think of countless dear friends with black daughters and sons. they have to give their kids the talk no parent of white kids does. the talk about being innocent and unarmed. of being suspected, feared, stalked, pulled over, apprehended, gunned down—even in their own homes—too often just because of the color of their skin. they tell their kids: do as you're told; be respectful. keep your hands visible; make no false moves. in this so-called liberated america, following these instructions can mean the difference between tasting oxygen or earth. black people know this. too many die while living it. the difference and indifference is sickening, malevolent, criminal.

at one a.m. calvin's fever spikes. he's restless, inconsolable. little can be done to ease his misery. we tend to him as best we can. crawling back into bed i hear the rain begin to fall. it's coming down sustained and heavy. a deluge. I wonder what would have happened if it had rained that day in minneapolis. wonder what the bloodless cops kneeling into george floyd would have done if the sky had opened up.

3.29.2021

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.

3.26.2021

rescue mode

At noon yesterday I was on the phone with my sister-mama after having finally gotten Calvin downstairs. He was recovering from the morning's back-to-back seizures—two of three grand mals in the space of just two days. She had read about our troubles—Calvin's seizures and my tweaked back—in my morning blog post and had called to check in on me. As we chatted, Calvin seemed at peace in his jumper, a place of comfort for a boy who suffers from an antiepileptic-induced movement disorder; the kid can't sit still even if he wanted to. My best guess is that he wants to.

While refilling Calvin's sippy-cup, I looked over my shoulder to see him slumped in his jumper, his dangling hands and face red as beets. Rushing to him, I called out his name, asking in vain if he was okay.

"He's having a seizure!" I yelled into the kitchen where I'd dropped the phone on the butcher block. "Grand mal!" I added, before I heard my friend quickly and compassionately end the call.

The first part of a grand mal, aka tonic-clonic, is the phase where the body contracts and stiffens as if in active rigor mortis. There was no way I was going to be able to pry my boy out of his rig, his body like a clam closing its shell. Instead, I pulled a wooden chair up and under him and set him in my lap. Just then he went into the seizure's tonic phase; this is when the body convulses. To reduce the tension from the jumper in case its straps might hurt him, and to get him on his side to prevent him from aspirating on sputum, blood or vomit, I reclined some, lifting up my legs and planting my feet on the nearby partition. There, in my lap still strapped into his jumper, my five-foot tall, eighty-five pound son convulsed for more than a minute. 

When the fit was over, I slid his flaccid body out of its trappings, taking care not to knock his floppy head on the floor, then I untangled his feet from the crotch of the jumper. In the filtered light I could see his face and hands had become ashen. To stop the cluster of seizures from advancing—Calvin's history of bad clusters has led to hospitalization for stubborn seizures as long as 45 minutes—I grabbed a vial of Diastat (rectal Valium) that we keep inside a little bench Michael built. I popped off the plastic top, opened a packet of lube, squirted some on its tip, pulled down his pants, undid his diaper, inserted the tip of the vial, depressed its plunger which squeezed the gel right into him. Then, I changed his wet diaper, spread his fleece baby blanket under his body and folded a flannel one under his head as he drifted into benzodiazepine oblivion.

I called Michael to tell him what had happened. He was concerned, particularly considering that since we started Calvin on a homemade THCA cannabis oil seven years ago, Calvin virtually never has grand mals in the daytime anymore, especially if he is awake. What's worse is that I don't remember Calvin ever having three grand mals in less than twelve hours.

It's impossible to know the culprit that caused four grand mals in the space of two-and-a-half days. Neither of us is exposed to others who might pass on illness. Calvin has not had a vaccine yet. Could it be too much antiepileptic medication? Not enough? A growth spurt? Hormones? The "natural" progression of epilepsy? After seventeen days without a grand mal and fifteen days without any seizures, was he just pent up? Seizures beget seizures; as with all paths, well-worn ones in the brain are easier for seizures to take.

When Calvin awoke, I eventually managed to get him to the green couch with a little bit of feeble help from him. He spent the rest of the day and night recovering, and still is. I'm grateful if not amazed that my body was able to do what it did, considering I was practically paralyzed with back pain the night before and yesterday morning. I guess it goes to show what we can do when we're in rescue mode for our kids.

3.25.2021

in the space of two days

wish i could sleep standing up. wish i could sleep while awake. wish i could sleep through the nightmare that is my son's epilepsy. a friend recently expressed regret over calvin's seizures. i said i never get used to them. perhaps i understated.

the other day i tweaked my back while stretching. stupid thing. happens only rarely. i was mostly fine until i tried to shave my legs. then i crumbled. two short car rides seemed to exacerbate the ache. last night, the pain was crippling. it froze me in place. if i can get into standing, the pain mostly goes away. again, i wish i could sleep that way.

calvin has had three grand mals in the space of two days. two of them this morning between four and six. my condition meant that michael had to do last night's heavy lifting, getting up every thirty to sixty minutes to pacify our restless kid. we gave him extra medicine. still he seized. i'm not one to exaggerate; i thought i might have to crawl on hands and knees to get to him. eventually, i got my head and shoulders above my legs. since then i've stayed that way.

i managed a morning stroll with smellie. easy slipping into rubber boots for rain. we skirted the fields—gingerly; grass is more forgiving than pavement. as long as i keep moving, my back mostly feels okay.

though weary, i haven't sat or laid down yet. afraid i won't be able to get back up again. i'm writing standing up, my laptop on calvin's dresser. my boy in bed is humming and staring at his frantic fingers. the house is trembling from nearby construction. traffic swishes by in the rain.

no car ride in store today. i'll have to imagine past ones—the gradual rise and bend above a sweeping salt marsh reaching to its sea, the sleepy backroad curves and dips, the stately oaks and pines, the little tree which drinks from tiny lake biette, the familiar and friendly and adorably grumpy faces. instead, i'll pass the time indoors peering out the windows, hoping for the seizures and the pain to go away.

Lake Biette

3.24.2021

heartening

We had seen Calvin's seizure coming for several days. At five o'clock yesterday morning it finally arrived with a godawful, blood-curdling shriek. I half expected it to last a long time considering it had been seventeen days since his last grand mal, but it was the usual ninety seconds. Afterwards, so as to monitor his breathing, I got in bed with him. Though still little for his age, he's big enough to spoon. For an hour, I held my boy as he shivered and twitched in the wake of the fit. 

Thankfully, by late morning he seemed well enough to go for a car ride. I chose to drive the close-to-home loops in case his condition went south. At Simpson's Point, the bay was socked in by fog. Within minutes of our arrival, though, it began to lift. I took it as a good omen that things might be looking up.

Despite my son's chronic condition amid pandemic miseries, I've been heartened by other events of late: the ongoing efforts of some amazing people to get Calvin vaccinated sooner than later; vaccine appointments for me and Michael this coming Saturday; the promise of longer, warmer days for gardening and barbecuing; an offer by Calvin's already-vaccinated former aide to help take care of him in the coming weeks; a seeming decrease in Calvin's overall seizures; cardinals announcing themselves on the tops of trees; an unforeseen and out-of-context greeting with the Carhart three-dog walker smiling and bicycling past me and Smellie as we strolled down our street; a serendipitous and safely-distant yet close encounter with the runner as he rounded a sleepy backroad corner. With my window down and the heat on (an alternative version of underwater respite), he paused his workout and kindly asked how Calvin was doing (he has been reading the blog.) Calvin was in the backseat trying to eat his sock.

After my late-afternoon walk with Smellie, I sat on the front stoop for a spell to watch the world go by. I could hear Calvin stomping around inside the house with Michael; I was thankful to be off-duty for awhile. As cars and folks passed by, I found myself missing my old friend Woody. His porch—high, broad and covered—was so much better for people-watching than mine, plus it came with Woody. We'd sit there for the good part of an hour. Sometimes we'd say nothing at all. Mostly, we'd tease each other or talk about the mundane. Other times he'd listen to me grieve about my little Calvin, at times wiping my tears away. Once in a while, we'd grasp each other's hand from opposite sides of the Adirondack-style bench his son had built for him. He'd tell me that I was the best thing to happen to our street. I'd say the same thing about him. Sometimes his eyes got misty. He would have turned eighty-nine this July. It's heartening to think of him.

Sitting alone on my porch, I studied a slightly irksome, partially obstructed view of the street which I found strangely unfamiliar, considering it's my home. Feeling dissatisfied, I was about to retire indoors when I gazed upwards. There, in the clear blue, I saw the half moon, white as can be like an inverted cup in the sky. It was framed by thousands of little red buds fattening up on the branches of our maple tree. Yet again I felt heartened, this time by the unmistakable arrival of spring.

Simpson's Point

3.21.2021

renewal

spring dang sprung. got a vaccine coming on. happening in a week. calvin is on the docket, probably sometime in april. so ready for a shot in the arm. 

fifty-eight outside. left my jacket in the house. hard to believe thursday morning felt like six degrees. i swear the grass is turning green. crocuses are pushing up. one bunch is already open. no boots on my feet. just sneakers. feeling almost giddy. 

ready for tiny bonfires. for outdoor gatherings, celebrations and visits. byobs. though it still looks like november, i can see the buds on trees and shrubs plumping. hear the songbirds going crazy. want to pack the backyard with all of my peeps.

tonight—just now—i took a short walk by myself (no dog, no kid) to deliver a hunk of cake to some friends who live around the corner. it was the first time I'd been alone since i can't remember when. i felt like my old self. i'm reminded that spring is time for renewal.

3.19.2021

back in the world again

seven a.m. clear skies. twenty-one degrees. seventeen-mile-an-hour north winds. feels like six degrees. i take smellie for her morning walk. got my fists balled up in my pockets, a long puffy coat over quilted pants over sweat pants tucked into my boots. got my scarf wrapped around my head and tied under my chin. double masks help fight the wind. between masks and hat, a mere slit exists for my eyes to peek out. so ready to get rid of winter. today, even smellie seems done.

lonely roads on our car ride this morning. just too damn cold. i see one runner—a tiny thing—her pony tail bobbing, her own fists clad in thick mittens. then, on one stretch of road i see the carhart three-dog walker brave the frigid winds on his bicycle pulling a cart miles into town. i worry about his freezing hands. winter in maine can be unforgiving.

back at home, i resume my campaign for answers to ambiguous vaccine policy. in maine, kids like Calvin are falling through the cracks; they're not adults but are old enough to get the pfizer vaccine. i've bitched about it to the governor, the head of the cdc, health and human services, my state senator. people want to help but i keep getting the same non-answer. it's frustrating. still, i try to drive home the message.

on a second car ride in late afternoon i think about the past pandemic year. of keeping my head down. staying focused. treading water while spending eight to ten hours a day alone with a kid who can do nothing by himself. i think about going nowhere save a couple of friends' driveways and a weekend stay at a rangely cabin last october where and when calvin seized. still, i feel privileged: for one thing, i'm not sick.

at a curve in the road near a pond a news break comes on between songs. there's been a change in maine's vaccine rollout. next week people over fifty can get vaccinated. better yet, starting mid april, people sixteen and up can get a vaccine! i finish listening then switch stations to hear more music. there's a moody acoustic song playing. the lyrics i hear get me: 

every day when i open my eyes now

it feels like a saturday

taking down from the shelf

all the parts of myself

that i packed away


all i know is

i'm back in the world again

like the lift of a curse

got a whole different person

inside my head


no more trudging around

stony eyed through the town

like the living dead no

i'm back in the world again

it's the only way to be


i cry like a baby. tears flow down my cheeks. i leave them there to breathe while the rest of me exhales a year of held breaths. it's been such a long time of just trying to keep it together. of not being with people. of being stuck inside these four walls. of doing everything for calvin. i think about all the hugs i'll be able to give. the faces i'll be able to pinch. just then, a new friend drives by and waves at me, snapping me out of my trance. i suddenly feel lighter. it's gonna be okay, maybe even better. i turn around and head back home. the wind has waned. it's nearly forty degrees. it feels like spring.

windows

Deep in dream comes the whistle of a train. It's one of few sounds—plus wind chimes, foghorns and rain—that I don't mind waking to, even at four o'clock in the morning. The well-composed symphony of notes, the crescendo, the low rumble and roll of steel wheels on burnished tracks soothes me. I imagine myself in one of the cars headed somewhere—almost anywhere—peering out the windows at countryside, cityscape or coast. I drift back to sleep again until five or six when I must get up to give Calvin his seizure meds. In this house, sleeping in is not a thing.

Earlier, I saved another stink bug, at least I think so. She'd been lingering inside the upstairs bathroom for too long. Like me, she'd been traipsing in circles. I cupped her in my hand and opened the window, tossed her out hoping she'd fly away like the last one. But she was in no shape, and fell to the ground like a pebble. Perhaps she's tough and survived the fall. I'd like to think so.

Milder weather is coming in dribs and drabs. I walk Smellie past Woody's old house thinking that soon it might be the kind of evening we'd be sitting on his porch drinking whiskey together. Last spring we were visiting each other from opposite sides of a window. By june he was gone. I miss him so. 

Mark and Kathy peddle past on their tandem smiling and calling my name. Kathy blows me a kiss. I blow one back to her. Turning my head toward the glare of a sinking sun I see Jill a few houses down standing in her driveway waving both hands at me. I return the favor. At the crosswalk Nan slows, turns then stops. She rolls down her window. Behind my mask, I crouch down to see her better. She says she's eager to get working in her garden. Her perennials are likely the most beautiful in town. I tell her I miss seeing her. In maine's window between late spring and early fall, we often stand in her yard—one she's tended for probably sixty years—regarding the iris and lilies, zinnias, geraniums and dahlias. She seems to know all the botanical names of her many varieties. Every year she gives me a bunch of poppy seeds and a clump or two of something I covet for my own garden. I try to return the favor, but what I have to offer pales in comparison.

Calvin is on his thirteenth day with no grand mals. We rarely see focal seizures anymore, though they're not completely gone. He's changing, growing like crazy. He's doing better on the potty and beginning to wash his hands with a bit less help. His balance is better, his walking more sure. I've begun to peel myself away from him for brief moments in the house and yard. It didn't used to be that way. For seventeen years I've had to always be within arm's reach of him. The weaning gives me tiny windows of freedom. Still, I yearn for so much more.

3.18.2021

gravity

I wake at four o'clock to the sound of Calvin rustling in his bed. It has been eleven days since his last grand mal, a fairly long stint for him. He's been ramping up for the past few days. He spends our morning car ride grousing. Doesn't want to eat the cut-up pieces of cheese, fruit and meat which I hand back to him from the driver's seat. We've only been on the road for a short stretch when I turn around and head back home. I think maybe if I give him an extra Keppra it might take the edge off and keep him seizure free like it seemed to do in the gravity of the last new moon.

gravitydownward force. pull. heaviness. profundity. dreadfulness. solemnity. magnitude. weight (of a situation or mass.)

Upon arriving home, I catch my friend Collin dropping off another dozen pastel teal and tan eggs from her hens. Masked-up, we stand in the front yard visiting for a bit, something we've regrettably never done before. We talk about our same-aged kids, about school and/or lack thereof. I tell her that Calvin had just been going berserk, as if ramping up to a fit. As a professor of earth and oceanographic sciences, she wonders if he might be suffering the effects of the oncoming storm. I tell her I wonder the same thing, whether the barometric pressure squeezes the cerebral spinal fluid in his brain's enlarged ventricles like water in a balloon, like the full and new moon's gravity affects the tides, and seemingly seizures too. 

pressure. tempests. gravity. seizures. inner and outer space (of a situation or brain.)

The other night, Michael and I watched the film, Gravity. I remember having seen it the first time in a theater where we watched it in 3D (could that have really been eight years ago?) It was thrilling and chilling and at times made me weep. Watching the trailer still makes the invisible hairs stand up on my forearms. I remember wondering why the film had so haunted me, until Michael pointed out the gravity of our own situation since Calvin's birth—being launched into the great unknown by a boy whose newborn face reminded me of the moon. I hear the protagonist's plea when spinning in a vortex—what do I do? what do I do? As the mother of a child like Calvin, I can deeply relate.

breathless. frightening. hopeless. helpless. anxious. tethered. untethered. stressful. isolated. free-falling. relentless.

I read somewhere that space has no temperature, and that in space bodies don't immediately explode or freeze. Somehow, knowing that feels comforting to me. Then I think about my son who is at once alien and familiar. Like in some episode of the Twilight Zone, he regularly sends me reeling. But he is also the one who grounds me with his otherworldly gravity. His hugs and smiles thrill me and sometimes make me weep. I'm hopelessly tethered to this earthly urchin who keeps me moored to a mundane landscape (of a situation or place.)                                                                                                        

             

3.17.2021

team hoyt

This father, athlete and inspiration died today at the age of 80. His and his son Rick's story is one of astonishing strength, stamina, patience, dedication and love. The world has lost a great man. Take six minutes to watch.

              

3.15.2021

light and lithe

i want to feel light and lithe. want to shed the layers required to fend against the bitter elements. want winter's frigid winds to end. want to loosen up the cinching in my shoulders. want to unclench my jaw and fists. want to feel warm breezes caress my neck and head. want to walk in the grass with no shoes. want to wear just jeans and tees.

i want to spring up and run for miles, if my heart and lungs and bones will still take me. i want to walk alone—no kid, no dog. give me wooded paths and fields and streets on which to thump and slap my feet. nothing is certain, but i want to try and see.

i want to feel light and lithe, want to float in the sun and read for hours, maybe fall asleep. want to be my only company. want to sip a glass of wine outside, watch the sun slip behind the trees as shadows stretch across a garden of green.

i want to get a damn vaccine. want to shed this inner angst and unease. want to drop pandemic rules which i've whole-heartedly embraced. i want to look into your eyes, see you face to face. want to gather—close—outside, not from six or eight or thirteen feet. want to hug until i'm breathless, dance until i drop, laugh until i weep (or pee.) want to see those maskless, beaming smiles dancing right in front of me. i want to party!

i want to feel light and lithe. want peace and quiet. want to release the weight of raising my disabled child, the kid who sends me up and around and upside down. and yet he helps me feel a sea of deep emotions—joy, sorrow, contempt, love, bitterness, despair, grief, pity—which make me feel so human and alive, though far from free.

Photo by Michael Kolster

3.13.2021

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.

3.11.2021

other sustenance

morning walks watching the sun rise in the sky. canada geese arriving. warm southerly winds. melting sheets of ice. chirping robins. lawns and fields emerging from blankets of white. freshly-baked artisanal bread nested in a brown paper bag hung on our doorknob. distilling the essence from everything. phone calls from my family and friends. my husband. napping in the sun with my child. driving the back roads. days mild enough to roll down my window. seeing and connecting with people, if only from a distance. dreaming of running. remembering my father and mother and knowing the good i inherited from them. getting a big smile from calvin. gorgeous scenes of rolling oceans, giant kelp forests and one astonishing octopus. sitting with a friend in her front garden. feeling the ache of want and nostalgia. FIP french radio. birds building nests. buds plumping. frost on golden fields. a decent night's sleep. knowing vaccinations are coming. college students dotting the sidewalks. watching one of them try roller blading for the first time. the promise of longer, warmer, greener days.

3.10.2021

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.

3.08.2021

food for the soul

a big bunch of thick-stemmed sunflowers standing in a tall jar of water, and a quart of hot-off-the-stove chunky lentil soup delivered in person, masked-up, delightfully unannounced, on the steps of our side deck.

a large zip-lock bag chock full of homemade chicken, pork and shrimp wontons, a smaller zip-lock stuffed with fresh spinach, and a quart of savory ginger and green onion broth for steeping; four large home-baked crinkled molasses and spice cookies on a square of parchment in a white bakery box with a clear-cellophane window; a baggie of handcrafted pork skin dog treats for smellie; homemade squash, nutmeg, percorino romano and parmesan cheese tortellini with a jar of tomato basil pasta sauce; a freshly-baked pull-apart loaf of newfoundland white bread—all these carefully nestled into a shallow cardboard box and unexpectedly hand delivered, masked up, at our mudroom door.

kitchen-crafted caramel sea salt, walnut and bittersweet chocolate tart in a foil-covered aluminum pan left on our side deck bench. most regrettably, a critter got to it before we did—dammit!

a carton of pastel teal and tan farm-fresh eggs hung lovingly on our doorknob in a beige plastic bag.

a big box stuffed with styrofoam peanuts cradling a small box of artisanal walla walla chocolates, a zip-lock laden with thick squares of homemade shortbread, and two bubble-wrapped bottles of regional red wine mailed to us from southeast washington state.

a massive wedge of white birthday cake iced with buttercream frosting and white chocolate shavings set on our side deck after dark in a clear plastic container with a happy red lid.

thank you maura, seth, ann and kevin, collin, stacy, and jens, barbara, nate and gabriel. you nourish our bodies and souls just when it seems we need it most.

3.07.2021

on the mend

Regrettably, we will be spending most of today on the green couch or upstairs in bed. Calvin is recovering from suffering grand mal seizures on the last two consecutive nights. As in recent episodes, they happened just after bedtime. In their wake, he often experiences several hours of panic-like symptoms: rapid, pounding heartbeat, chills, trembling, clammy hands, gastrointestinal distress, and perseveration in the form of repeated eye-pressing, patting and pounding his mattress, bed panel, and the wall behind it. I do my best to soothe him by rubbing and patting his back, embracing him when he wants, keeping him covered, and preventing him from careening out of bed. In the middle of the night, I change his diaper if it is wet. Last night, because he was shivering, I took his temp. I give him his morning medicines early to prevent subsequent, pre-dawn seizures. On these kinds of nights, more so than most, I don't get much sleep.

This is the third week in a row in which Calvin was hit with grand mals on two consecutive days. These double whammies are becoming increasingly common of late. Seizures, like some living organisms, seem to seek out patterns and paths of least resistance. Seizures are known to happen with greater frequency in moments of lighter sleep, which is right before waking and just after falling asleep. Clusters of seizures are especially troublesome because they are difficult to control and it is hard to know when to intervene with the use of extra maintenance drugs, the use of emergency medication or seeking emergency care. We have learned the hard way—through nightmarish experiences—to avoid, at nearly any cost, going to the hospital. Instead, we do what we can at home attempting to contain the seizures without the use of benzodiazepines, an effort which requires me to trust my gut. This morning, after weighing options, I gave Calvin an extra tablet of his one pharmaceutical, Keppra, to see if it might alleviate his panickiness and prevent further seizures. Thankfully, it did. And though he's hopefully on the mend, he may not be out of the woods yet.

3.05.2021

underwater respite

warm water runs in rivulets down my back. in the liquid heat, i stretch my shoulders, hamstrings and calves. try to touch my hands to the enamel until they're completely flat. though i come close, i can't—yet. i want to be more limber and forgiving. my body, mind and spirit, more pliant. like some young bodies and brains. plastic. like a river when it meets rocky resistance—it just flows right over.

in recent days—in great part due to this runaway pandemic—i feel brittle. my patience stretched to its limits, my mood at times slightly hardened by a boy who occupies my every daytime wandering, irks my nerves, disturbs my slumber. i don't want to be or become rigid, above all on the inside. don't want to be wound so tight i'll break. want to feel like i do when walking barefoot on a stretch of beach or stepping off a plane in the west where the weather is mild and the skies are big. want to feel relaxed again, want to be able to fully expand my chest. i'm not back there yet. but at least i remain open, fairly flexible and compassionate. i can be grateful for that. but i want to bend better in life's tempests, like a sapling—tender. green. resilient.

in these long days spent with a wordless child, i can at least find a little space—in-between his feedings, bathing, diaper changing and desperate embracing—to wonder and reflect. besides my writing, behind the wheel and in the shower are where i find respite and time to introspect. there's a zone i can enter where I dream, but also ask myself things like: am i too impatient? too reflexive? reactive? impassioned? selfish? desperate? petty? apathetic? what's in store for me ahead?

i know i should be in ways more like calvin. more forgiving and forgetting. not disapproving. unconditionally loving. not contemptuous or resentful. less judgmental. like flat hands to the bottom of the bathtub, i'll keep trying to get closer.

calvin is in bed, its panels and netted canopy secured for his protection; the source of my angst—his safe keeping—literally tamped down. in the room next door, the water soothes and softens me. long, hot showers are my escape. i grant myself the luxury since so many other indulgences are impossible, especially in a pandemic. underwater has always been for me a comfortable space. it's where i'm compelled to do exactly nothing but to sway in the stream hoping to somehow drown out my son's grunts and shrieks chirping from the baby monitor, which is perched like a bird on the edge of the sink.

Photo by Michael Kolster

3.04.2021

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.

3.01.2021

on seeing people

Calvin is good. He's sleeping well, eating well, is mostly sane. He's had zero seizures for almost a week. Still, he's a handful, even when he's at his best.

These long, monotonous days of the pandemic have become even longer now that Michael is back to teaching (in addition to making photos, producing a book, coordinating its publishing, writing an essay for it, interviewing art department candidates, writing referrals and evaluations and pitches, advising students, attending a myriad of zoom meetings, and other niggling responsibilities that he keeps to himself so as not to burden me.) Though I am grateful to have such a supportive husband who is gainfully employed, handles the finances, does all of the grocery shopping during the pandemic, all of the cooking—always—and much if not most of the laundry, it's not that easy to spend eight to nine-plus hours on most days alone with a boy who can do nothing by himself. By the end of the day I'm sometimes a bit fatigued or frazzled. (Thank goodness I'm unemployed!) In a more general sense, I'm feeling the need to see other human beings. I wonder if Calvin shares my sentiments about this extended pandemic sequester, this lack of seeing others, if only viscerally.

On today's drive, again I saw no one—no runner(s), no dogs walking their owners, no salty old men peddling their bicycles—only the ghost of strangers sitting behind the glare of their windshields. In search of other sustenance, and with nothing else to do in the cold, damp, icy outdoors, I drove further south than usual on roads I rarely travel along. My companions were my kid and dog, plus The Police, some Cars, some Beatles, Carly Simon, Stevie Wonder, Steely Dan, Carole King, Van Morrison, Pink Floyd, Elton John, Neil Young and Sharon Van Etten.

Instead of familiar faces, I saw birds, a couple of live red squirrels and some dead grey ones, at least one chipmunk and a few cows. When I stepped out of the car to take pictures I heard cardinals, finches and perhaps one robin. I watched a steer crane his neck to scratch his side with the tip of his horn. I saw color emerging from a bland, white landscape, smoke drifting from chimneys, mist rising from the earth and water.

While I'm grateful for these beautiful vistas, ones which I'm unsure if Calvin regards but are now more than ever essential to me, they are no replacement for seeing people. So, if you find yourself with an extra moment and feel like visiting—outside, in the driveway, masked up and/or safely distant—don't be shy. I'd love to see you.

Click any image to enlarge.