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.

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.

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

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.

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.

treading water

another good soaking. all day long. water gurgles down storm drains to who knows where. i wonder what it's like down there. above ground, cars swish by in rivers. just like on my morning drive. lots of ruts and muddy puddles. on the backroads today i see exactly no one. makes me feel somewhat alone. but freedom and comfort come to me in radio songs and thoughts. any musing or channel i want. tank full of gas. my kid in the backseat playing with his bare foot and trying to chew on his sock. happy and calm. my trusty dog along for the ride. i consider my luck.

on the drive i think about running—away. past. into. from. i see white caps off simpson's point. the sea is seething. i feel it. our vaccine rollout is now based on age alone. talk about marginalization. the most vulnerable treading water—indigenous, black, brown, poor, disabled, chronically ill like my son. dying at two to three times the rate of others. as if life in this pandemic wasn't hard enough. a year of escaping each wave, of perhaps being swept away with half a million others in the grip of this viral tsunami. i think about privilege, its pastels and able-bodied shapes. must the rest of us crouch in the margins until summer? is that the american way?

but beautiful colors are beginning to emerge from winter's white and gray. the burgundy and bronze of small-leaf rhododendrons. the acid-green of mop cypress. the copper of fallen pine needles. the chestnut of wet bark in rain. mist is about to rise from the fields. february is melting into march. spring awaits us.

white skies blind at twilight. i walk the dog in the rain. ice and snow become reflecting pools. streets are half flooded. sidewalks are glacial in places. i trudge down the middle of the road. kick a sopping glove to the gutter. where is its partner? one driveway down, a crusty knit hat thaws out. who is its owner? not a soul to be seen except the fedex driver. he slips on a wet metal step at the back of his truck. catches himself. i ask if he is okay. "that was a close one," he says, as if to himself.

the moon is full. i can feel it in the way my son clutches me. in his intensity. can see it in his face this evening. in his aimless pacing. i wonder if a seizure is on the way. does he just want out—of this rut, this pandemic, this house? like the sea, i feel him. tethered together, we tread water. thankfully, i can do it forever.

Photo by Michael Kolster

parallel universe

With tears in my eyes I tell my husband, "I would have been a good mother." He says that I am; he also knows what I mean. Like all expectant mothers and fathers, I had faith in the promises of parenthood—pretty much counted on them, even in my dreams—only to find out those promises are for some parents but not others.

We live near a small liberal arts college where Michael teaches photography, on a street which divides the main campus from the athletic fields. When school is in session, the nearby sidewalks and paths pulse with streams of energetic students. Whenever I walk Smellie to the fields, students nod or say hello to me. Masked up, I smile with my eyes and, at the beginning of the semester, I tell them how great it is to have them back in town. As they disappear over my shoulder, my smile melts. With stinging eyes, I think of Calvin. I wonder, again, what he might have been like if not for his brain anomaly. I ask myself:

What kind of student would he have been? Might he have been a math lover, professor or photographer like his father? Would he have been a skillful illustrator, designer or writer? Would he have been a talented athlete? What kind of conversations would we have had? Would he have had a zany sense of humor? or would he have had nothing in common with us to speak of? 

I allow my mind to wander to a parallel universe, aware that if things hadn't gone south, Calvin might be looking into colleges by now. Maybe he would've preferred one close to home. Perhaps he would've wanted to head out west to our beloved California. Maybe he'd fall in love there and never return. Perhaps he'd take a year off to travel.

I imagine these scenarios often, knowing none of them will transpire. The loss of those options, those dreams and promises of parenthood, weighs on me with each missed milestone, and probably always will; (we'll never know the joy of being grandparents, for instance.) Maybe that is partly why I cherish the relationships I've made—and kept close to my heart for years—with some of Michael's students: Arnd, Nick, Ivano, Emma, Micah, Hector, Ouda, James, Aspen, Moira, Raisa, Margot, James, Macy, Pawat, Ben, Jean-Paul, Daniel, Salam, Maina, Garrett, Izzy, Trevor, Nevan, Preeti, Colin, Henry, Alice, Octavio, Darius, Nate, J.P., Brennan, Niles, Katie, Jude. They are all incredible young folks—smart, kind, creative, confident, humble, generous and thoughtful—just like we would have raised Calvin to be ... in some parallel universe.

But Calvin, who is seventeen and is inching up on me, and whose face I heartbreakingly shaved for the first time the other day, still chews baby rattles, wears diapers, and loves to be cradled. Though some doctors cited a developmental hiccup, I still grieve whatever it was that caused his brain to be so messed up. I often wonder what kind of boy he would have been, what kind of grownup. I wonder what kind of parent I would have been if things had turned out differently. I like to imagine I would have been a rock star mom to an ordinary, healthy child. You know, one with high expectations though not too strict, one who encouraged autonomy, inspired confidence, offered praise, taught introspection, one not hung up on some of the puritanical aspects of American society. After all, I've always loved children—babysitting them, teaching them, coaching them—even the rambunctious, sometimes irreverent tweens and teens, perhaps because I never really lost touch with my goofy, rowdy, childish self.

But rather than excelling at motherhood in the ordinary ways, I've had to be my son's primary companion (he has no friends), his doctor, his physical and occupational therapist, pharmacist, caregiver and nurse, all rolled into one. That's the kind of mother Calvin needs me to be, and so I'm down. And I know I'm not the only parent who faces deep sorrows, losses, challenges and struggles. I just wish I lived in a certain kind of parallel universe—one which feels light years away—if only for a moment.