dear friend

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

riches

A train whistle awakened me, the rumbling of its wheels somehow comforting, yet simultaneously mournful in its reminder that I'll not soon be boarding one and taking it places. Like those wheels, my mind turned in circles with a touch of nighttime angst. What will the future bring? How long will I be confined to this place and this difficult task of being Calvin's mother, nurse, teacher, companion, aide? Will I ever again step across borders to explore great unknowns?

Earlier, at the edge of a bonfire, I stood, fists shoved into my pockets, fighting the cold. The fire at my feet warmed my thighs, Lauren's hot glögg, which I sipped from a glass mug, my gut. Friends and neighbors had gathered to celebrate the solstice. Breaths and words left their lips in frosty puffs. Dried onion skins, charred white, floated up from the fire like ghosts. Jupiter and Mars peered down on us.

Back at home, before the bonfire, my boy had been thrashing in bed, suffering some sort of discomfort. I decided to give him some extra THCA cannabis oil, some drops of herbal rescue remedy, plus acetaminophen. Then, I laid him back down again. The concoction worked to calm him, and he seemed to fall asleep as soon as his head hit the pillow. Worry followed me anyway.

Later that night, as I laid awake listening to the train cruise through a nearby neighborhood, I wondered if I'll have to take care of my son for the rest of my life—or for the rest of his. It's a thought I try as best I can to keep at bay, its consequences daunting—the thought of this traveler in an immovable life rooted in what has already been two decades spent in the same nation, same state, same town, rarely escaping in over eighteen years to California, New York, Seattle. The alternative is just as frightening.

And then came yesterday's new moon and raging storm, which brought high winds and sideways rain. In just hours, the temperature plunged from fifty-four to just fourteen degrees. The power went out in the afternoon. Luckily, last year we got a generator, so we had light, refrigeration and heat. Still, I was awake last night from midnight until after three o'clock a.m. worrying about the thousands of folks without power and heat for their homes. I padded downstairs to check my phone in case any neighbors had texted me looking for help to warm their bones. Thankfully, it seemed everyone was safe and sound.

When I crawled back into bed, I was reminded of the train I heard on the night of the solstice, and the anxiety and self-pity I had been feeling about our impossible situation with Calvin. I thought about the isolation and limitations that come from caring for Calvin, but as I thought further on it and considered our fortune to be warm and dry amid the crazy wildness outside, I began to see the riches that have come with having had Calvin. Had it not been for him, I might never have begun writing. Perhaps I'd never have begun quilting, or baking again, or running. No doubt, had we not moved to Maine where he survived—against nearly every odd—his premature, medically-complicated and fraught birth, I might have missed developing scores of deep and loving friendships with doctors, nurses, farmers, carpenters, teachers, ed techs, mothers, fathers, marathoners and other runners, professors, deans, students, artists, other writers, journalists, restauranteurs, film makers, builders, bakers, octogenarians, and dear, whiskey-swilling neighbors.

So, in the early morning hours of our secular Christmas Eve—a holiday to which Calvin is oblivious—as the storm still tossed around huge boughs of white pines—the same ones I rested my eyes upon in the first days of writing this blog twelve years ago—I realized how ridiculously rich my life really is, even in the confines of these four walls with my little ball and chain.

Photo by Michael Kolster

anniversary

Today marks the twelfth anniversary of my first blog post. In twelve years, and over 1,747,526 hits later (no doubt some of them from bots), scores of lovely people have joined in helping to fuel my journey, recharge my battery, and validate my innermost feelings about what it is to raise a disabled child who suffers from intractable epilepsy. Those wonderful people are you:

all kinds of mothers, fathers, doctors, nurses, restaurateurs, therapists, ice cream scoopers, bloggers, children, ed-techs, in-laws, sales reps, grocery store clerks, photographers, chefs, brothers, teachers, flight attendants, runners, city councilors, dietitians, case managers, receptionists, kindred spirits, painters, octogenarians, presidents, ed-techs, bar tenders, cooks, bus drivers, radio talk show hosts, chaplains, lawyers, actors, neuro-ophthalmologists, contractors, professors, nurse practitioners, marathoners, deans, physical therapists, grandmas, grandpas, farmers, farmhands, coaches, nieces, nephews, priests, college friends and their spouses, athletes, bowl-turners, aunts, uncles, cousins, principles, headmasters, musicians, retirees, servers, brewers, hair stylists, writers,s founders, weeders, orthotists, superintendents, directors, students, ex-students, curators, sisters, poets, producers, carpenters, baristas, CNAs, actresses, technicians, former coworkers, contractors, designers, business owners, candidates, librarians, congresswomen, critics, high school buddies, neighbors, longtime friends of the family, occupational therapists, speech and language pathologists, pharmacists and their staff, hospital staff, phlebotomists, neurobiologists, film makers, celebrities, readers and kind strangers.

Thank you for reading and sharing and connecting and caring. You’ve all done something—whether unwittingly or not—to make our lives richer, more comfortable, happier, better, and for that I owe you each a debt of gratitude.

lost boys

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

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

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

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

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

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

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

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

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

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

senioritis

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

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

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

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

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

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

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

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

Calvin's preschool graduation photo

breathing and cursing

When Elizabeth, a woman I’ve met only once but have known several years, picked up the phone, my tears began to flow. I had called hoping she’d help quell my pain, worry and frustration about my son. I knew she’d understand because she has a child like Calvin of her own—Sophie—but also because I know, in part from reading her blog, that we seem to see the world and react to it in similar ways.

I wasn’t looking to Elizabeth for answers, only for her to lend an ear and perhaps validate my emotions and concerns. I used to turn to my mother, for one, when I succumbed to the gravity of despair. Mom always said in her loving voice, “No one can know how hard it is except for you,” and that was enough to ground me. But I lost my mother to Alzheimer’s by degrees over ten or more years, then finally in early October of 2015. 

It seems, too, that I lost a dear friend, a single woman I'll call Stacy, who has no children and with whom I was very close. I had years ago called her in a similar moment of grief over Calvin, needing someone to listen, my mother having long become unable. Her voice was familiar, soothing and kind. Then, at one point she said something like: 

"Christy, ever since Calvin was born you’ve been so angry."

She went on to talk about acceptance, compelling me to ask her whether acceptance had to mean the denial or absence of anger. I asserted my belief that expressing anger can be healthy, even cathartic, and should be honored as one of our core human emotions right alongside joy and sorrow. She talked about the universe trying to find its balance. Hearing this widely-held and appealing theory offers me little consolation, the cosmos often feeling so much as if it tends toward chaos despite its astonishing beauty. After her mention of balance, we lost the phone connection mid-sentence. She rang me back, but I didn’t pick up because I felt more disheartened than before I had called, so she emailed me and began by saying:

you called today in a place we've all been and sometimes what we need is an ear, sometimes a distraction, sometimes an insight we didn't know we were seeking. 

And while I understood her meaning—knowing we all have our burdens to bear—she's never experienced anything close to what I have with Calvin. Still, I had tried my best to be open to what it was she had said on the phone, though I must admit I probably failed to hide my agitation. She ended her email with this:

my intent is unwavering which is simply to love and support you. 

I replied immediately:

i know. xoxoxo

I haven’t heard from her since; it has been nearly seven years. I wonder if she knows about my mother's death. I didn't contact friends when Mom died—didn't have it in me. But people soon learned from reading my blog.

Not long after that phone call, when Michael, Calvin and I were in the throws of flu, seizures and sleepless nights, Elizabeth, Sophie's mom, wrote to ask if we could talk; she was in a hard place. I told her we were sick but that I’d try her over the weekend. When I reached her I could hear her daughter softly moaning in the background.

For the good part of an hour we chatted about cannabis and a new strain she’s begun giving her daughter, one that helped calm most of her seizures which were getting out of hand again. We talked about grief, frustration, and anger, and about the parents who claim the graceful and patient caregiving of their complex, disabled kids. We marveled at such a feat, indeed wondered if it were truly possible. We joked about losing it when our kids' shit and food fly, when we fear for their lives, when their bleating becomes too much to bear, and when so much of our sleep is deprived (some call our condition PTSD, though in our case the P stands for present and persistent). It seems we two, Elizabeth and I, are sisters in arms when it comes to our fleeting gracelessness and, at least for me, complaints and pity parties. We agreed that being able to vent our frustrations, by writing, cursing and sometimes screaming, helps renew us for our endless duty to endure more. Because this caregiving of our disabled children and adult children who are non-verbal, incontinent, unstable and racked with seizures, is relentless and indefinite, the worry, fear and burden proverbial barbed thorns.

Elizabeth wrote to me, after I lamented not being able to talk with her on the phone at the very moment of her most recent crisis:

I always know you are there breathing and cursing.

I smiled and chuckled as she went on to describe two tin cans connected by a string, as if we were next door neighbors. If only.

Breathing and cursing, I mused. What a nice thought, and I felt much better even though we hadn't really spoken.

Photo by Michael Kolster

the clamdigger

On last Friday's back roads drive with Calvin, I stopped at the cove that opens into Maquoit bay. The skies were dark, the winds were frigid and the mercury was beginning to plunge. Nonetheless, a lone clamdigger, a large, clean-shaven man perhaps not quite young enough to be my son, was putting in his airboat. I took a few photos before he launched his craft, then asked if he were going to go out the following day despite the forecast of single digits and windchills as low as minus nineteen degrees. He flashed me a handsome grin seeming to understand my worry, and assured me that he wouldn't.

As Calvin chewed his sock in the back seat, I watched from the car as the clamdigger boarded his boat, revved it up, then glided across the icy inlet as if riding a giant hockey puck. I wondered how he would keep his hands warm while sinking them into the freezing-cold muck. I couldn't imagine he'd feel his fingers for very long, even with gloves. I wondered how long he'd been a clamdigger and if it were his only livelihood. Life is hard, I thought, while considering the clamdigger's back-breaking work in all kinds of harsh conditions, and then of Calvin's daily and lifelong struggles and miseries. I silently wished the clamdigger a big haul in return for his tremendous effort.

Later on and well past my bedtime—which is often as early as seven-thirty or eight due to frequent sleep interruptions from Calvin—I watched from the bathroom window as some friends delivered a big piece of the ice cream cake that I had gifted to another friend for her husband's birthday party. Having been guests at the small celebration, they were given the foil-wrapped hunk of cake by the host to leave on our porch so I could taste some of it later. A few minutes before they arrived, the wind and Calvin's whimpers had woken me, and so I had gotten up and covered him (he can't do that by himself), then went to pee and get a drink of water. With a clear view to our driveway from the upstairs bathroom, I had seen them pull up. Watching my friend Stephanie brave the bitter, gale-force winds while trying to avoid patches of ice on our driveway made me appreciate her and her husband's effort, especially considering it was late enough they probably would have preferred to zoom straight home from the dinner party and crawl into bed themselves.

I tiptoed again through Calvin's room into ours and slipped back into bed with Michael (the ice cream cake would no doubt stay frozen outside.) Wide awake, my mind drifted from one angst-laden hope to another: that Calvin's seizures would someday soon abate; that his new medicine would begin working better than it is—if it is; that none of us comes down with Covid; that on Tuesday, Calvin's school will really reopen after eleven long days of having him home with me, both of us going in circles; that I can start running again in earnest; that more folks will get their vaccines and boosters; that this virus doesn't mutate into worse versions; that hospitals and their staff can soon catch a break; that people can get back to work; that more Americans decide to start protecting each other instead of being so small-minded and selfish; that voting rights legislation will pass despite despicable, unthinkable, partisan obstruction.

Lying in the darkness, I wondered again when so many Americans became so indifferent to the health and well-being of others—those in their community, their friends, their neighbors, their own kin. I wondered why some people insist on thwarting proven public health measures such as wearing masks in public during a goddamn pandemic. I mean, seriously, what is there to prove? Some twisted notion of freedom to do as one pleases despite posing grave risks to others? Some hackneyed belief in the myth of rugged individualism? Dude! Exactly no one accomplishes anything on their own, which made me think of my many friends who support my emotional well-being with their small kindnesses—flowers, cards, books, homemade goodies, entire dinners, phone calls, champagne, oysters, homegrown veggies, smiles, waves, hugs, love, and all kinds of cake. I thought, too, about the mailman and the grocery store clerks and the bookstore owners and Calvin's primary care provider and neurology team and teacher and aides and bus driver and therapists. We all rely on each other for sustenance. We're in this together. We need to look out for each other.

Then, I thought again about the clamdigger, who works in brutal conditions so he can pay his bills by peddling his harvest to restaurants for their patrons. In a previous life, despite being a stranger, zany me might have asked if I could join him. I'd have learned something new, might have lightened his load a bit and perhaps even made a new friend. Who knows?

Two hours later, as I finally began to unwind, I went to sleep hoping: that the cold snap would break soon; that my gifted ice cream cake (cherry chocolate fudge brownie with a coconut twist) was a big hit; that we can soon begin to see friends indoors again; that spring will arrive early; that the clamdigger made it home safely, and that his hard work, plus the care and help of others, keep him warm and dry, fed, healthy and loved.

Maquoit Bay

dear finnegan

i wish i knew you better. though perhaps i did without really knowing it, until now, maybe. until having been compelled to think of you more deeply since your passing last month, which was far too soon. i wish i had carved out more time to be with you. in the same way i wish i could with my own son, i wish i knew your innermost feelings, hopes and dreams. in each case, that will never be. still, i miss you, and the world misses you, too, finnegan.

i think i knew you mostly through knowing your people. like your kin, you had a special kind of pull. like gravity on tides. a vessel's longing for water. a river to open ocean. waves yearning for the shore. and, like your family, you were a poem.

like your mother, my dear friend lucretia, you were generous. blushing. earnest. nurturing. hard-working. beautiful. welcoming. creative. down to earth. maverick.

your father, michael, was in you too. you were gifted. adventuresome. athletic. artistic. handsome. industrious. clever. funny. loyal.

like your siblings, seamus, maeve and daire, you were an old soul from the beginning—wise beyond your years. genuine. kind. humble. pure. accepting. thoughtful. intelligent. insightful. tender. caring. exceptional.

and, yes, you were exacting too.

yesterday, at your memorial, hot apple cider was served in paper cups under a peaked white tent atop a slope. school buses parked aside the field having just shuttled scores of mourners eager to celebrate and remember you. men in woolen shirts and boots gently poured watery rings around the modest bonfires they'd built, the crackling timber turning satin-black and ashy white. smoke and its consoling aroma lingered before dissolving into the chill. as the ceremony got underway, hundreds of folks began streaming downhill toward the podium. from the center of the crowd, i waded crosscurrent hoping to reach the edge, slowly weaving between people as best i could to avoid disturbing the flow.

i stopped alongside a low wire fence flanking a field of windswept grasses. the crowd stood silent on three sides of me, a sea of winter jackets, and hats with fluffy pompoms. there were people of all ages. many of them dear to me, though most of them unknown. as a dozen or so of your closest friends shared stories of knowing and loving you, finnegan, i listened while sometimes gazing out over the pasture. i imagined you running its length as a child. perhaps doing cartwheels and somersaults on days like these. at that moment, the meadow—which just three weeks earlier had been shrouded by a river sky—resembled a vast channel. its tufts of windblown straw appeared as gently rippling rapids, though golden, each wave cresting in the same direction—downstream. thirty minutes on, i glanced back over the field to see the half-moon rising in the southeast. a tiny cloud or two drifted amid the liquid blue sky, the sun nearly kissing the earth as if mother and child. thinking of you, finnegan, i was moved. bowing my head, tears dropped onto soggy reeds beneath my feet as i imagined standing in a river next to you.

at your gathering, a wise, gentle woman said that grief's element is water. i don't know if that's true. but it makes sense to me, finnegan. grief and loss, like water, can knock us down like a breaker in the sea. i know. it can move us and move through us, like a drink. i know. and as tides and rivers are wont to do, grief can bring us somewhere new. i know well that truth; my own river—its headwaters born with calvin—continues. but if anyone had the ability to move others in life and in passing, clearly, finnegan, it was you.

thanksgivings (in no particular order)

lovable son. stovetop espresso with warm milk. time by myself. a wonderful husband who totally gets me. jammy eggs on weekends. good nights' sleep. seizure-free days. mild weather. justice. white birch overlooking a green lagoon. cooking with fire. smellie, our most beloved dog, and the levity she brings us. maine, for the most part. the ability, time and place to run. feeling ever-so-slightly lighter. walking the college trails. laughing uncontrollably (sometimes at my own jokes.) steely dan. blonde redhead. david byrne. school days. teachers, ed techs, bus drivers. gifted administrators. sunlit leaves yellow as daffodils. cozy old home despite cracking plaster and creaky floors. wood fires in the stove. ambient light, mood light, candlelight and dimmers. homemade pizza. cut flowers in glass vases. hand-me-downs. quiet drives on back roads. taking in the landscape through senses and lens. making ice cream cakes with cookie crusts in a dozen tasty flavors (come try some.) friends made from strangers. walks on pennellville road. clean sheets. long hot showers. tangerine sunsets. moving films and funny movies. crusty frost on a grassy field. ghostly mists hanging out. bourbon on the rocks (within reason.) michael's mashers. bear hugs. dry firewood. witticisms. this particular community. being able to write and draw. peanut butter and raspberry jam sandwiches. the smell of sautéed onions and garlic in olive oil. ten-buck chuck taylors in assorted colors. deep conversations. buttermilk-brined spatchcocked turkey. honey-glazed, sherry carrots. relative health. meeting michael's students. thanksgiving gatherings. pumpkin and pecan pie. finnegan and his family. friends who check in with me through the grieving. talking long distance. covid rapid tests and vaccines. côtes du rhône. sunlight glinting off of wavy windows. a gifted jar of homespun applesauce and a bag of fresh mussels delivered to our door. seussian-looking trees. kind strangers. trusted friendships. relatives. devoted readers. love. music. blue jeans. 

river sky

For the first time ever, I traveled the familiar back roads on foot. It was an all-together different experience than driving the same route. More intimate. More wide open. More wild. More of everything I desire. I wanted to lose myself, my angst and grief in it. Dissolve into the big blue sky.

Although I wasn't solo, the walk reminded me of backpacking for seven months through Europe when I was only twenty-three—back when my world first opened up—often hiking lonely country roads from bus stops and train stations to hostels and inns. Having been swept back in time, I closed my eyes for a bit and lifted my chin to better feel the sun on my face and to smell the salty breeze. I noted the new black asphalt under my ratty white sneakers. Wind softly combed the pines as if to whisper as I stopped briefly to regard clumps of wildflowers gone to seed. Puffy white clouds settled on a horizon made of vast banks of trees. In that moment, it was quiet and gorgeous. Under the big sky, I felt my own insignificance, while also hoping I offered the world something in return for its generosity. And, I thought of Finnegan.

Going slow motion in what has become one of my favorite spots in the world offered me a much-needed release—from relentless angst over my disabled, seizure-prone son Calvin, certain nagging questions, petty grievances, and intense sorrow after the accidental death of my close friend's child, Finnegan, who, despite not seeing him often, was also dear to me.

My back roads companion was someone I befriended this fall. While driving around with Calvin during the first year of the pandemic, I had frequently passed Lynn and her husband as they walked from their house near the point down a long wooded road. As she and I roamed the roads together, we talked about friendship rifts, parenthood, love, loss, grief, romance. It felt good to be in the presence of someone fun and new who buoys me and seems to get this person who sometimes feels misunderstood.

As Lynn and I padded along, my mind kept drifting to my friend's son, Finnegan. He died last week in a kayaking accident on a raging river. He was young, talented and vital. Full of love and promise. I remember his smooth, tawny summer skin and blushing cheeks. I liked his spiffy hairstyles. I recall him playing the fiddle for me and a restless Calvin in his family's kitchen, the music seeming to come to and from him so effortlessly. I remember his smile and warm embraces whenever I'd stop in to visit, which wasn't nearly often enough. Like his younger siblings, he was an old soul with a generous spirit whose humility might've been mistaken for bashfulness. And, like the rest of his kin, he was magnetic, but in a soft, warm, gentle sort of way. I've adored the moments spent with him and his family. Unlike so many others, they're memorable because the family is so welcoming, loving and real. Regrettably, I didn't—often couldn't because of Calvin—carve out enough time to be in his presence. And, just at the age when the larger world begins opening itself to young adventurers, nature's wildness took him. He was about to turn twenty-three.

On our car ride yesterday along the same backroads, Calvin spent most of it going berserk. As usual, I couldn't know the source of his misery. Regrettably, sleep deprivation had drained my patience for his mania, and I barked and cussed through his shrieking and flailing. As we drove past the farm where a few close friends were gathering around a bonfire to grieve the loss of our friend's son, Calvin continued to melt down. Just then, I glanced at the sky above the field. It was magnificent—moody in places, placid in others with large swathes of leaden darkness amid frothy patches of lavender-gray and blinding whiteness. It's a river sky, I thought, which made me focus on Finn and forget about Calvin's grousing. In that moment, rather than being self-absorbed and wretched, I was moved to be grateful—for my son and husband, my friendships new and old, for Finnegan and his family and their many friends, for those beautiful, rambling back roads and the big sky which, whether cloud-strewn and stormy, starlit or clear and blue, is forever breathtakingly beautiful.

a better place

this page had been half-filled. one quote jotted down. a few thoughts tacked on. an anecdote. one metaphor. a rare triumph. a common grumbling. a millionth banal account of traipsing around the house with calvin—my agitated, nonverbal, legally-blind, seizure-racked boy, so limited and afflicted. so often unreachable. in short, nothing i had written really mattered.

hours later—our son tucked into bed and mostly calm, though ramping up—we got some tragic news. the kind no parent wants to get about beloved parents and their precious kids. practically—perhaps wholly—unfathomable. the questions whirl. what? how? why? where? when? i ask myself, why not my child? his present is so limiting. his future so bleak and uncertain. but there are no answers. all we know is bad things happen to everyone. no reprisals. no need for extra angels. no divine neglect or intervention. no mysterious plan to someday be revealed. only this: mother nature rules. unlike other people's gods, she doesn't discriminate, judge or choose. she evolves. but in harrowing times, despite her glorious days of sunshine and mist, autumn colors, raindrops, clouds, stars and sparkling waters, it's hard to say she's beautiful.

the next day, i came across and read aloud some words written by a friend i've known and loved since my early years of swimming. as usual, lidia's kindred musings resonate to the bone. i see and feel our connection:

meditating on tributaries, streams, rivers as a way of being connected to larger waters. my imagination one tiny thread leading to others, making a braid.

i delete my half-filled page of stuff that doesn't matter. instead, i think about braids and connections. about what makes this earth a better place: friends who gift their neighbors homemade food; those who show up bearing flowers; folks who donate clothes and meals and time and cash when they have little; strangers who stop to greet a disabled kid and his weary mother; friends who mix cocktails and build picnics for each other; teachers who give students extra of themselves; friends who call to catch up despite months of silence; folks who give generous embraces whether or not they've been invited; friends who note the tender bones of other's struggles and the beauty and strength borne from the burden; peculiar and pure kids like calvin, their hugs and unconditional love; certain mothers, fathers, sisters, brothers; humble, loving, gifted boys who kayak, sew, strum and fiddle.

the impossibility of it all

From six years ago

In a twisted sort of way, Saturday morning’s seizure brought a morsel of relief, albeit fleeting, to my child who was batshit crazy for two solid days. Like the mounting tension between wrestling tectonic plates, the pressure in Calvin's brain seems to build until it quakes, and in the temblor's wake we often find relative calm. 

The previous morning, we’d tested the waters of our favorite cafe in the next town over. We’ve been weekend regulars there since Calvin was a tot, ducking in and clumsily weaving our way between clusters of small, round tables and wooden chairs, overstuffed sofas and flocks of coffee lovers, many who recognize us and we them, mostly because of Calvin. 

“I’ll have an iced coffee,” I said to a familiar smiling barista.

At the table behind me, Calvin spilled his cup of salted cucumber bites, then pierced the calm with his sonic siren shriek, not once, but twice.

“Okay Kid, one more time and we’re outta here,” Michael quietly warned our flailing child, who at times has little control over himself in the grip of benzodiazepine addiction and withdrawal, especially in the path of an imminent seizure.

Seconds later, we were packing up only minutes after we’d arrived, a scene we’ve played far too many times before. Michael whisked our manic kid outside. Flustered, I gathered Calvin’s containers of diced fruit and sandwich, his sippy cup, backpack, bib and rag, plus Michael’s coffee and my half-eaten cinnamon roll.

“Christy,” the cafe's owner, Tonnie, said as she approached, “don’t ever feel like you have to leave because of Calvin.” She went on to say that it’s not like he’s some kid who is simply misbehaving. “He’s part of our community.”

We hugged each other and I thanked her and told her how much her words meant to me. As I turned to go, I began to weep. Outside, I struggled one-handed to untie Smellie from a sidewalk tree when Maria, a fellow patron, came out after having seen me crying.

“Can I give you a hug?” she offered, before wrapping her thin arms around me, her delicate frame belying her soundness.

She, too, told me that Calvin was part of the Cafe Creme community and that we didn’t need to worry about his behavior. 

“It must be so hard,” said Maria, once a stranger, who has watched Calvin grow up amid the crowded cafe, no doubt having seen him on days leading up to seizures and on days in the thralls of benzodiazepine withdrawal. “Relentless,” I added, mentioning his recent string of manic outbursts and the seizure no doubt on its way.

Maria helped me clip Smellie to the leash and we said our goodbyes. While crossing the street, I spotted Michael and Calvin strolling along the brick sidewalk beside a neat row of shops. I stopped, sat on a bench, tipped my head back and closed my eyes for a spell, wishing we lived a different reality.

Saturday morning's seizure didn't yield the usual long-term calm, and that night Calvin had several brief, focal seizures every hour after midnight until Sunday afternoon. An extra dose of THCA cannabis oil plus a dose of rectal Valium did nothing the quell his brain's storms.

As I write this, Michael and I are holding vigil in Calvin's darkened room, Michael in bed beside him while I perch on the changing table in what feels like Calvin's mini hospital. Inside, the air is still and close. Outside, the day is gloriously warm and sunny, not too humid. I think to myself that on a day like today, which is headed into the nineties, we should be taking our eleven-year-old son to Pleasant Pond to go swimming, or for a walk with Smellie in the cool of the woods, and perhaps to Cote's red shack for an ice cream cone. But that is the life which one must give up when parenting a chronically ill, severely disabled child who, most regrettably, is in withdrawal from a drug he probably never should have been prescribed and whose dose never should have gone as high as it did—habituation and eventual loss of seizure control one of its many heinous downsides.

Instead, as I watch my son sleep between fits of seizures, retching, and painful tears and, with the shade drawn against the sun, I dream through the impossibility of it all of what—one day—might be mine again, but without really knowing how.

glorious morning

it's a glorious morning when calvin wakes up on his seventh day without seizures, eats all of his breakfast, then gets on the bus heading to school. it's a glorious morning when a field sparkling with frost crunches underfoot, when trees have turned neon and the sky is blue. it's a glorious morning when it's thirty degrees and the sun is warming my face and shoulders. it's a glorious morning when i see people i like and love on the roads and fields and trails.

this morning, smellie and i went on a stroll with lauren and her dog, hola. we caught up on all things newsworthy and personal. we took a detour to an open space i rarely go. there, the marathon runner i used to see quite often on my pandemic car rides glided by and said hello. later, on the second part of an extra-long walk, i ran into a smiling tahnthawan, gave her a hug and talked with her about dogs, sparkly things, and trying something new. back at home, i marveled at the morning light splashing on the acidy, autumn foliage in my garden. any one of my few encounters were enough to make my day a good one.

after a late-morning bowl of steel-cut oatmeal with spoonfuls of honey and flaxseed meal, i drove along the back roads to michelle's house. she gave me a tour of her gardens, which are magnificent and ruggedly lovely, even as the perennials have gone to seed. then, we set out for a little jaunt, at first walking along the sleepy street that runs in front of her home. from there, we dipped into a quiet neighborhood and, at the dead end, ducked into the woods. the path, which was blanketed with fallen leaves, spilled onto a salt marsh offering a wide-open view of maquoit bay. we were surrounded by maine's astonishing beauty. warmed by the sun and standing on mats of soggy reeds and wooden planks stuck in the mud, we talked about caring for our disabled and chronically ill kids. as a hospital nurse, she shared some of her nightmarish emergency room covid stories, and we agreed that now is not the time to give up on measures meant to combat the pandemic, save lives, and suppress the emergence of more virulent strains, by getting vaccinated and wearing masks indoors. we also agreed that places like the one we were immersed in have saved us during the pandemic—that if we didn't have easy access to roam in and around wild, beautiful landscapes, our lives as caretakers during the pandemic would be much harder. i told her that the pandemic—most notably because of my daily drives along back roads with calvin when he wasn't in school—had made me more grateful for maine, its space, beauty, and its people. in essence, familiarity has endeared me to it.

i drove home with the windows rolled down. a sunny, sixty degrees feels balmy in a maine november. the breeze blowing through my hair felt exhilarating, like riding my bike as a girl. heading down the hill toward the bay, i could see forever—a rare thing in this place of few soaring vistas. i felt a sense of freedom i don't often feel anymore. i still had two hours to kill before calvin's return from school. i had time for a long, hot shower, and a chance to do some writing. having worked up an appetite, i dreamed about all the delicious leftovers we might eat for dinner—black beans and salmon, chicken curry, turkey-ricotta meatballs in puttanesca over homemade noodles—and the chocolate-malt-marshmallow-oreo ice cream cake i just made but have yet to taste. i was filled with gratitude. and i wondered, after such a glorious morning, if anything else (besides my amazing husband) might just jump right out and delight me. right then, calvin's bus pulled up to the curb, and my drooly, smiling turkey stepped off and almost hugged me.

out of nowhere

call it what you want. a close call. an accident. incident. collision. crash. smash-up. main thing is we seem to have escaped unscathed. the motorcyclist got a gash on the sole of his foot. he was wearing sneakers instead of boots. seated on his machine, he must've come at us with some decent speed. he didn't slow or skid or stop, that is until he hit us. thankfully, he didn't smack us at ninety degrees. he hit at an acute angle and glanced off of our side panel. put a major dent in the back seat door. the impact rocked us. the three of us lurched sideways in our seats. i screamed.

it happened tuesday. calvin, smellie, and i had been taking an after-school drive along the same old beautiful back roads we often do. had stopped at simpson's point to take in the scenery, sun and wind, salt and choppy water. for whatever reason, calvin went bonkers. so we went back to moving. not long after, he calmed, so i decided to turn around. to go back and take a photo. that's when it happened. the crack-up.

after the accident, a kind bystander led me to the shoulder. calvin's teacher drove past and pulled over. he waited with calvin while i called and spoke with police. i asked the motorcyclist if he was hurt. i was concerned. he mentioned his foot. i asked him what had happened. asked if he was trying to pass me. he said, "don't play the blame game, lady." i assured him that was not what i was doing. just wanted to understand what had just occurred. as always, i had signaled before the turn. had more than ample space—200+ yards—between me and the oncoming car in front of him. i had taken the left turn safe and slow. the biker came out of nowhere. hit us as we were still curving around. i was still going slowly as one does in a turn, my signal still on.

in the end, he seemed to understand my questions. no reason to rewrite or malign. he wasn't a bad guy. i didn't get a ticket. didn't break any law. i was established in my lane. don't think i was at fault. but who does, after all?

in the wake of the mishap, i think about the what ifs (since calvin's birth, i've become good at it.) i shudder to imagine the outcome had he struck our side head on. what if he had been driving a truck? what if we had hit him on his cycle? the imaginations are sickening. it could have been so much worse. we're all okay. fortunate.

an outpouring of care and concern came in from folks who saw our smashed-up car on facebook. dozens of kind words and love streamed in. yesterday morning, while walking on the wooded trails with smellie, i ran into (not literally!) a runner i used to see often on my back roads travels. he paused his workout to ask if we were okay. i gave him the details. he seemed relieved. i expressed my appreciation for his kindness and concern. then, he sped away.

yesterday afternoon, i stayed home with calvin. we traipsed around the house and did circles in the garden. didn't venture onto the roads. calvin was in a good mood. no problems at school. i spoke with his teacher on the phone. thanked him for his role on the side of the road. i realized, that though the accident itself was jarring, i wasn't shaken. perhaps, since he was born, little beyond calvin can faze me.

this morning at four a.m., calvin suffered a grand mal. it had been nineteen days since the last one occurred. unlike the scene of the crash, it was grisly. calvin's little body was stiff and wracked with spasms. his face and fingertips turned ashen. after the attack, his airway was jammed. we rolled him on his side. he restarted breathing. i crawled in and cradled him while his heart was still racing. his eyes were wide open, vacant, not tracing. later, he turned to me and held my neck. pressed my head against his own, as if to lessen some hurt from his brain's wreck. i wish i had seen the thing coming. maybe i could have restrained it. but when it comes to things hurtling from out of nowhere, sometimes there's just no way of escaping.

Calvin going berserk at simpson's point.

treasures (i wish my son could know)

dragonflies. wildflowers. butterflies. bees. a bunch of neighbors from whom we can borrow an egg or two or three. cote de rhone and gigondas. blazing sunsets overlooking snaking rivers and salt marshes. homemade mini pizzas hot from a wood fired oven. friendships young and old, near and far, dear and informal. seeing a new friend smile when i call his name as he pedals down the road. clouds lit up and laced with silver and gold. starlit skies provoking awe and wonder. dipping toes and fingers into shallow waters. nostalgia. jumping off of bridges into brackish inlets. dancing with reckless abandon. dancing at all. david byrne. steely dan. kate bush. blonde readhead. the low spark of high heeled boys. cocktail hour. bicycle rides. the thumping sound and feeling of running on a wooded trail. visiting our friends' vacation rental. teenagers. floating docks. water dogs. loons parting a rippled pond. wind mixing up leaves and limbs. tiny pine cones clinging to waterlogged boughs. watching our pooch, smellie, swim. michael's fluffy homemade pasta noodles. getting a tiny little buzz. beauty. stories. hopes. memories of yesterday. dreams of tomorrow. possibility.

From our friend's deck in Georgetown, Maine.

marathoners

i think i overdid it. tweaked my knee running. this body—still fairly fit and strong—sometimes reminds me i'm not not as young as i used to be. or slightly overzealous? both, maybe.

and so i break out my bicycle. there's no doubt where i'll ride: along the back roads. the adventure is altogether different from trips in the car. everything is slower and more quiet. no rumbling engine. no radio. no djs jabbering. very little traffic whizzing by. no infant-toddler-teen screeching in the back seat. instead, wind sweeps back my hair. feels like i'm flying. i can hear the buzz of bees. the chirps of birds and crickets. hear water lap against the shore and run in rivulets between rocks and trees. i'm blown over by the sweet scent of fresh-cut hay and clover. of salty sea air. of smoke from a nearby burn. red winged blackbirds dive and dart. hawks swoop from tree to field. workmen smile when they recognize me. they've seen me drive by with calvin a hundred times. i see the carhart dog walker whose name i now know. i stop to talk with him again. he tells me intimate details about his difficulties. i try to think of ways i can help.

the ten-mile escape renews me. mostly, i've forgotten about my woes. but it's impossible to completely elude worries of my son and his condition. sadly, the angst is well-seated in my bones. two weeks ago we lessened his keppra. hope it might help. since then he's gone longer between seizures. not by much, though. i've put extra cannabis oil on board. maybe it's helping. i think so. we lessened the keppra again this morning. i'll let you know how it goes.

i get back into my meditative state. the rare and glorious feeling of adventure and escape. runners pass me by. warms my heart when they wave and smile. some of them run quite far. as i see the road stretch out before me, i imagine being a marathoner. i wonder what sends or takes them such distances. hardship, loss, grief, trauma, stress, joy, exhilaration, reward, endeavor, competitiveness, obsession, evasion? i know several (of these feelings and these athletes.) i'd love to know the source of their ambition. years ago, i fleetingly considered training for one. i wonder how it feels. to run three times as far as my longest day's swim or jog. to get into a zone where nothing else matters but stride and step and breath. is it a dreaded pain? a kind of high? a refuge safe from other harms? hard to know. perhaps all three.

my dear friend joanie is an olympic gold medalist and world-class marathoner. she lives on a nearby back road. she trained up until the day she delivered her firstborn. she swears my swimming workouts didn't hurt my unborn child. rather, she's convinced they helped equip him to survive. recently, she wrote me about my mothering:

none of my marathon efforts will ever match yours. unfathomable efforts by you for so long and with such love, strength and dedication.

i return to her words often. they make me blush and weep. seventeen years of spoon feeding, diaper changing, butt wiping, bathing, dressing, lifting, hand holding, coaching, teaching, watching, worrying, nursing, aiding and advocating is a slog. it's not a challenge i signed up for. nor one for which i could ever really prepare. but i've long known i have stamina—for racing the 400-yard individual medley and the mile, swimming fourteen-thousand grueling yards in four hours (and something close to that on consecutive days), biking marathon distances as a child, nine months unemployed. i just put my head down. one stroke, one step, one day at a time. breathe deeply. exhale well. pace myself. try to hit my stride. lean on my peeps. imagine a smart event in which i finish strong.

maybe i'm a marathoner after all.

the kindness of strangers

It's Thursday at two a.m. I'm in bed with Calvin after his seizure. With my hand draped across his side to monitor his breathing, I reminisce about my previous day. I think about the kindness of strangers: the salty, sunburned guy in sleeveless sweatshirt and torn jeans who wanted to help me when Calvin dropped down in the middle of the grocery store; the woman in the checkout line who let me and my impatient, pre-seizure Calvin cut in front of her; the kind clerk who was uber-patient as I fumbled with my wallet and stumbling child.

In the darkness of the room, my thoughts then drift to the strangers I've met while driving around on the back roads with Calvin. Countless folks brightened my brutally-long and sometimes dark pandemic days, but none as much as the runner, the Carhart dog walker, and the black-clad couple, all of whom I used to encounter with some frequency. Since our car-ride schedule has changed, however, and since Calvin is having so many seizures which require a day or two of recovery, I rarely see these familiar faces anymore. I miss them, miss our exchange of nods and smiles and waves. Because my days are still long and my child is still sometimes near impossible, their absence is palpable. Recently, I finally pulled over, introduced myself and connected with the latter three for more than a fleeting moment in passing. I expressed my gratitude for their unwitting source of comfort amid a difficult time. The first of these roadside stops was with the black-clad couple. It yielded a kind invitation from the woman, Lynn, for me and Calvin to visit her and her husband, John, at their home on the Point. Yesterday, while Calvin was in school, I took her up on her offer, deciding to go solo to suss things out for a possible future trip with Calvin. As we got acquainted in their kitchen, John frothed up some milk for my coffee and made us breakfast. With plates of cinnamon French toast and berries propped in our laps, we sat on their deck overlooking a misty inlet. We spoke of a dear mutual friend, of the other back-roads travelers, of art and family and pharmaceuticals and politics and pandemic. Lynn then gave me a tour of their home and gardens, which she and her husband have worked on improving for decades. I found the two of them to be intelligent and artistic, with good senses of humor, and they revealed an easygoing openness and humility. The short time I spent with them in their idyllic setting felt like being on vacation. Upon my leaving, Lynn and I gave each other goodbye hugs, and made a mental plan to get together on my turf; it felt as if I'd known her for years.

Finally, dawn begins seeping in through the windows, and as it does, my day at the grocer and with John and Lynn seems like a distant memory. As the shadows recede, so too does the risk of Calvin's demise from SUDEP (Sudden Unexpected Death in Epilepsy), so I finally sneak out of his bed and into mine. As a cool breeze drifts over my body from the open windows, I close my eyes and continue to dream and wonder about the lives of strangers, and of the pleasure of making friends with them. 

breakthroughs on a somber day

again, my mood is somber, reflected in the sky's leaden heaviness. weighty as a handful of stones in my pocket. but like a cloudy sky, there are breakthrough moments of light. little bits of levity, like when i pick up a sleek and clean smellie from the groomer and she goes cutely berserk. or when my husband comes home early. or when i see the space open up as i chop down a sickly, old, monster rhododendron, and michael finishes it off with woody's chainsaw—so much possibility for something beautiful to take its place. something less beastly and oppressive. something i don't have to wrestle. something that doesn't burden me like my son's ongoing struggles.

lately, sorrow has been setting in as i'm reminded of how calvin, who is seventeen, should be a rising senior in high school—should be looking into colleges, reading interesting and complex novels, mowing lawns, hanging out with friends on the town mall or bowdoin quad, leaping off of piers and low bridges into brackish waters. instead, he's chewing on a crocheted rabbit rattle, having his hand held while walking down the sidewalk, tossing his sippy cup sideways like a toddler, playing with baby toys, being potty trained, wetting diapers.

several of my friends and acquaintances have kids his age. they're so grown up. independent in nearly every way. they've got futures as bright as breakthroughs of sunshine and blue sky in a bank of dark clouds—hopeful, sparkling, limitless. witnessing them is lovely, yet, like bittersweet lozenges, hard for me to swallow.

and as the pandemic has slackened a bit of its grip, i feel surprisingly unmoored. as the tethers are loosened, i'm not sure what to do. i find myself flailing. it's a strange mix of emotions. free and yet still imprisoned by my son and his condition. and while my husband made plans to visit italy this fall to print his next book (having photographed in paris and hawaii several times in recent years) i find myself wondering how i'll get through today, tomorrow, and the day after that. wonder where i'll be or have traveled, or what this normally-prolific self will have accomplished in two, five, ten years. nowhere? nothing? same old same old?

and i'm missing the handful of folks who unwittingly helped ground me during the pandemic. familiar strangers—the runner(s), bikers, strollers, dog walker(s)—smiling, nodding and waving to me from the roads. faces i look forward to seeing. lives i can only imagine and live vicariously through. haven't seen them lately. like a starless sky, without them i'm having trouble navigating through the pandemic's rough and receding seas. other than my husband and son, and the landscape itself, they've been my constants this past year, like little beacons or shards of light in a darkened sky. saw them much more than my own friends, though from afar. without their grounding, i feel as though i'm drifting from shore. and though i'm a pro at treading water, i feel slighly seasick. but perhaps, like stars on a cloudy night, they're not reliable. and why should they be? i'm nobody to these strangers. we all have our own lives and loved ones and struggles. and yet i remain eternally hopeful for communion, compassion, friendship, empathy, understanding.

today, however, on a favorite stretch of wooded road, i saw the black-clad couple (though this day wearing more earthen tones) who live on the point. i slowed and pulled over. rolled down my window and introduced myself. while trying hard not to choke up, i told them how i'd seen them frequently while driving the same roads nearly every day during the pandemic with my nonverbal, legally blind, autistic, epileptic, seventeen-year-old boy. they peaked in on calvin, who was in the back seat craning hard to find an absent sun. i told them how reassuring it was to see the familiar faces of strangers like them during months on end of long, lonely days spent solo with my son. they said they recognized my car. i'd seen them wave. the three of us visited for quite awhile, discussing neighbors and kids, drugs and doctors, the pandemic and back roads. i invited them to read my blog. it felt good to finally meet and connect with folks who have unwittingly been my mooring during a very difficult year. felt healing to offer them my gratitude in person. i wish i could have hugged them. they seemed quite affable and open.

finally, we said our so longs, and as i put the car in gear and headed to the point, i felt the sun's warmth and saw its rays start breaking through cracks in a vast bank of clouds reflected in a tranquil sea.