junior

This morning, I put my coulda-woulda-shoulda-high-school-senior, Calvin, (he's actually a junior because he repeated kindergarten) on the bus and got to work. I walked Smellie, did a load of laundry, folded some of it on the green couch for all passersby to see, transplanted a shrub, watered the entire thirsty garden, prettied up the withering day lilies, put clean dishes away, did my first legitimate grocery shopping (wearing my N95 mask) in a year and a half, read a bit of news, and wrote. A little more than halfway through the day, Calvin's teacher Paul, whom I adore, texted me to tell me that Calvin was doing well, and attached a photo of him walking down the stairs. No doubt The Kid is on the move.

On Facebook, oodles of friends sent me loving sentiments in response to expressing my angst about sending Calvin to school for such a long day after having spent most of his time chilling with me since the damn pandemic began. One person wrote, "he's gonna be FINE." I wish I could be so confident, but he had seven grand mals this month, and our boy has a habit of not being fine much of the time.

Because of Calvin's sheer number of grand mals, which have been ticking up for several years while his focal seizures have almost dissolved, I've been pondering adding a second pharmaceutical to his regimen. We've cut back pretty far on his Keppra to see if that makes a difference, though it's still too soon to tell. But when I read about all of the side effects of new and old drugs—some of them behavioral, others lethal—I get cold feet.

Epilepsy is a goddamn beast. There's no cure, and the drug side effects can debilitating and impossible to tolerate. Calvin's wordlessness complicates everything since we can never know what he is thinking or feeling. With at least one grand mal every week, a day or two of recovery, plus the drug side effects, I can't imagine he ever feels really good.

When it came time for the bus to show up, I sat in the dappled shade on the front porch with Smellie, my pink Chuck Taylors brightening me up. The bus was a bit late, allowing me to do what is exceedingly rare for me, which is NOTHING. When it finally arrived, seeing Calvin stand at the top of the stairs with his aide, Fern, keeping him safe, I was amazed at how much Calvin has grown since the spring.

The Kid gave me a hug, clawing my neck the way only Clawvin can do. While we stood in the driveway, our arms wrapped around each other, I tried hard not to imagine that—if things hadn't gone so wrong—he might be joining some of the seniors on the playing field, in the classroom, in the halls, and well on his way to college.

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.

unthinkable

Tropical depression Henri didn't make landfall in Maine, but we had low barometric pressure and insane humidity anyway. It seems the full moon also helped tug Calvin's seizures into existence—he had one grand mal at nine p.m. on Sunday, and another at three the next morning.

Last night, after putting Calvin to bed, Michael and I ate barbecued salmon and sushi rice with spicy fish sauce while watching the last half of the film, Aliens. During one of many grisly scenes—at the very moment when an alien burst through the chest of its wide-eyed, terrified human host causing her to convulse—we heard our son shriek. It was his third grand mal in less than a day. We sprinted to his room where we found him tangled in his blanket, convulsing, his lips a dusky blue.

"I'm going to give him the Diastat," I told Michael, who expressed unease with my decision to employ the benzodiazepine because they can be so problematic.

But my brain and my gut said, do it!, so I grabbed the vial from the changing-table drawer, cracked off its plastic cap and squirted lube onto its tip. While Michael kept our boy safely on his side, I unsnapped the crotch of Calvin's onesie, ripped open and pulled aside his diaper, then carefully inserted the tip of the vial into his rectum, depressing its plunger slowly. My intent was not to stop the seizure which had already begun to subside, but to thwart a probable fourth, perhaps more devastating one, from occurring in the night.

The Diastat knocked Calvin out. Benzodiazepines like Diastat, aka rectal Valium, can cause respiratory suppression, and since SUDEP (Sudden Unexpected Death in Epilepsy) is thought to occur within twenty minutes after a grand mal, I wanted to monitor him for awhile. So I brought our unfinished meals and glasses of wine into Calvin's room, plus a chair for Michael. With my plate in my lap, I sat on top of the changing table where I could easily see Calvin's chest rise and fall. Holding vigil, we ate the rest of our dinner in the dim light of the small room grieving the impossibility of our child and his sorry lot in life.

As we munched our salads, Michael expressed regret about Calvin's unthinkable limbo: he can walk, but can't—or won't—walk well enough to stroll any distance down the street, in the woods, or at the beach, and yet he cannot sit still; he can see, but we can't know what or how well; he can manage finger foods, but cannot use a spoon; he can swallow, but sometimes chokes on food and drink; he is having some success sitting on the toilet, but he still has to wear diapers and can't poop without the use of suppositories; he cannot speak, so sometimes it's near impossible knowing what he might need, understand, feel, suffer or think; he's right there, but so often he's out of reach. In short, he's an unthinkable enigma.

Finishing our dinner, we discussed the paperwork we have to complete and submit to probate court in order to be granted guardianship of Calvin when he turns eighteen in February. Yes, even though we are his parents, we must apply to become his legal stewards since he can't make decisions for himself. One assurance we've been asked to give is that we will continue to provide Calvin with activities he enjoys. As if his suffering from seizures and/or drug side effects isn't regrettable enough, the list of things that give Calvin joy is extremely limited; he likes hugging, baths, music, car rides, swings, sweets, and a few baby toys. He doesn't have friends. He can't do sports. He doesn't know how to play with trucks or dolls or games or Legos. He can't run or ride a bike or play catch or swim in pools, lakes, rivers or seas. He doesn't watch movies or cartoons. He can't walk the dog. He can't write or read or camp or bake or fish or hike. He is capable of doing just enough to avoid being confined to a wheelchair or to a bed in a room, but he can't do most of the things that make most kids feel happy or truly free.

This enigmatic and beloved child of ours lives in a limbo alien to most, one he'll likely endure his entire life. Oh, how I wish him to be free of his unknowable, unthinkable miseries.

the calm before the storm

the sky holds its own burden. the air is close and still. the tempest is on its way. it's coming up the coast. the bugs keep in their lairs. is this the calm before the storm? trees let go their dewdrops. from high up, one plops into my coffee. the forest reeks dank with mildew. smellie chomps deer droppings, then drags her paws on running trails. i wonder if she feels the storm drawing near.

the back roads are mostly deserted. no sightings of my favorite usuals. no runner. no dog walker. no nice couple from the point. been missing them lately. wish we could commune. at the point, the tide is high and choppy. the sky begins to sprinkle. two sopping swimmers come ashore, tethered to bobbing neon buoys. i think they might be my neighbors. smiling, i do a u-turn. at the edge of a stretch dividing fields, a gaggle of canada geese stop and stare. i stop and stare, too. they're hesitant. what the hell are we all doing? outside my window, a hawk swoops along at forty miles an hour. it's keeping time with me. in a blink, i've lost him. easy come, easy go.

in the back seat, calvin yanks off his shoe and chews it. he's not quite himself. his cheeks are flushed like during certain seizures. it's day nine. a full moon. i keep expecting the fit to fall. i was awake last night for three hours. ended up switching beds. didn't really help at all.

at home, we traipse our millionth circuit between these four walls, making well-worn paths from room to room. little fingerprints smudge the walls. other surfaces are covered with drool. i try to wipe them down as i go. a window finally pried open gives neglected plants a chance to breathe. i've never seen their stems and fronds move. i guess they're alive after all.

we get outside before the storm. walk three doors to woody's old home. calvin tries dropping down. i brace him from doing so. lead him across the street. knock on bill and cathey's outside wall. they're home. they take us in. we teeter through their kitchen and living room. out the back door to their deck. there, my son looks suspicious, as if having a little seizure. cathey helps him down the steps. both with bare feet, she and bill escort us home. tell me to call them no matter what i might need. just in case. i feel taken care of. the world—this town—is my beloved home. in the calm before the storm.

put me in your pocket

like the satiny skin on the back of my hands, patience thins. so easily ruptured, like tissue, just with the faintest bit of pressure. after a tear, will it mend? will there remain a ghost of stress and frustration veiled over almost everything? like the close glove of humid air, it's suffocating. oppressive. i've felt and written this again and again. i wonder if things will ever change. or is there really no escaping?

my throat feels raw from screaming loud as i can. trying to drown out the maniac seated behind me to the right. hoping to release my tension. my son is a train wreck, today especially. he screeches and flails, moans and careens. he's out of his mind, and taking me along with him. he's hurtling toward a seizure. i can feel it. it sickens me. i give him an extra half dose of thca cannabis oil, hoping it will calm and fill the void—the one left by lowering his keppra again. we're hoping to get him off it like we did his other meds.

i'm pent up and seething. have loathesome feelings. i love him and i hate him, if only fleetingly. it's not his fault, i know. not anyone's, really. well, perhaps dr. Rx should take some blame. i'll gladly lay it on him. all those pills. drugs on top of drugs on top of drugs. benzos—for a toddler! no way to tell for sure which ones are hurting or helping. i try to trust my gut. mostly, it seems the drugs just inflame his fits and bad behaviors. but maybe it's just the seizures. i wonder how godawful he feels.

how long can a body and mind take this hell—his and mine, our family's? almost no time these days away from my messed-up kid. just short walks with the dog, evenings with michael and nights while asleep dreaming of people i love and who love me. even my writing is punctuated by my son's moaning, stomping and madness. he's a mini frankenstein. a jekyll and hyde kid. at times, i'm repulsed. i have to forgive him. forgive myself. we're all monsters once in awhile.

on days like these, driving along my beloved back roads offers no escape. i'm tethered to my little freak. and when i'm home, i can hardly do anything for all his insanity. it's insufferable. so, in fits and starts, i surf social media. live vicariously through other's photos—weathered docks and lakeside cottages, galapagos rocks and iguanas, western sunsets, cocktails, pasta, and crisp white tablecloths on city sidewalks. the images save me. give me a window of respite from shitty days like these.

put me in your pocket, please. from there, i can better imagine escaping. can view what lies beyond these walls. can see all that we are missing.

On one such day, photo by Michael Kolster

staying safe

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

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

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

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

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

little birdies

for the fourth consecutive morning, i wake well before the birds begin to sing. in these parts, that's pretty damn early. today, sleep and dreams shatter at the sound of my son's seizure screech. his second grand mal in less than three days. i had hoped we would avoid a cluster of them. but his fits are effing stubborn.

after i give him some homemade thca cannabis oil, i crawl into bed next to him. spoon him like i've done for years—my little birdie, who flaps his wings and opens his mouth for bits of food just like our feathered friends. he falls asleep in my arms for just a spell. before drifting off, i hear the clear, sharp call of a cardinal. then a chirping robin. it is beckoning its little ones. i've seen a pair of robins and their offspring nesting in the tree near calvin's window. been spying them a couple of weeks now. at first, the hatchlings were so tiny, nary a quill to show. now they're nearly big as their feeders, but with shorter tails. yesterday, i watched as, one by one, they began to leave the nest they've all outgrown.

a quarter hour after calvin's grand mal, he arouses. presses his eyes with the heels of his palms. i turn him over to give him his morning pills. chase each one with drops of water from the sippy cup i keep on his bureau. give him a couple of pain killers in case his head hurts. the best i can do is guesswork; since he can't tell me, i can never really know. he's agitated. restless. not himself. wondering about that last one, i ask myself—has he ever been so?

unable to sate him, i climb out to fill more syringes with cannabis oil. i think i need to be more liberal with it. it seems to help him. i lift and latch the panel on his bed. secure the safety netting so he won't fall out and hurt himself again. before heading downstairs, i raise the shade and peak out the window. in dawn's dimness, i see the robin's nest is empty. its hollowed center makes me feel forlorn. it has been a wonder and delight to watch the chicks change and grow. turning, i check on my own little birdie. he's all balled up in bed, his head resting on a goose down pillow. he isn't yet a fledgling. i wonder if he'll one day leave this home. wonder if we'll ever become empty nesters. i really don't know.

lonely road

When channeling my inner Joni Mitchell, and with the exception of a few lines which I've taken the creative license to omit below, I can imagine having written this bittersweet song—All I Want—about me and Calvin. When life mimics art, it can be a killer.

 

I am on a lonely road and I am traveling

Traveling, traveling, traveling

Looking for something, what can it be

Oh I hate you some, I hate you some, I love you some

Oh I love you when I forget about me

I want to be strong I want to laugh along

I want to belong to the living 

Alive, alive, I want to get up and jive

I want to wreck my stockings in some juke box dive

Do you want—do you want—do you want to dance with me baby

Well, come on

All I really really want our love to do

Is to bring out the best in me and in you too

I want to talk to you

I want to renew you again and again

Applause, applause—Life is our cause

When I think of your kisses my mind see-saws

Do you see—do you see—do you see how you hurt me baby

So I hurt you too

Then we both get so blue

I am on a lonely road and I am traveling

Looking for the key to set me free

Oh the jealousy, the greed is the unraveling

It's the unraveling

And it undoes all the joy that could be

I want to have fun, I want to shine like the sun

I want to be the one that you want to see

Want to write you a love letter

I want to make you feel better

I want to make you feel free

2017, photo by Michael Kolster

waiting for the day

For nearly fifteen years I've been dreaming of and waiting for the day when my son could amble around the yard by himself. Since Calvin was about three, he has appeared to be on the verge of walking without me holding his hand, harness, elbow or shirt, or slinging an arm around his neck or waist.

Sadly, just before Calvin took his first steps in earnest when he was two and a half, he was on a pretty high dose of the powerful antiepileptic, Keppra. Judging by the way he walked as if he were drunk and/or aboard a rocking ship, it must have made him dizzy. Poor kid. When I think about the legion of awful drug side effects my tiny boy has endured for so many years, I feel sick.

With time, Calvin's balance has been getting better, but most especially during the pandemic. My guess is the improvement is due to the gradual reduction of his one remaining pharmaceutical, Keppra. Though we ditched it before he turned three, we went back to it when he was six or seven. We've allowed him to gradually outgrow his "therapeutic" dose, and more recently we began reducing it because it doesn't appear to be doing jack shit. His dose (mgs/kg) is now half of what it was years ago. It might be my imagination, but he seems slightly calmer lately. Moreover, he has not had any seizures in twelve days, which is equal to his longest stint since March (though I think he's on his way to having one tonight.)

Getting back to his walking, this is the first summer that I've been able to let him get a distance from me without worrying (too much) that he will fall and hurt himself. I still stay nearby to spot him, especially when he walks on the stone path or in the narrow spaces between the rock borders of the perennial gardens, but the kid is doing decently well balance-wise. And though his gait is wonky as ever, I almost never see him teeter backwards anymore. Unfortunately, I still can't leave him on his own because he's prone to sit on the ground staring at the sun and/or sweeping blades of grass, twigs or bark into his mouth. But I can relax from my usual hypervigilant state for fleeting moments just to pull a few weeds or deadhead some flowers, and for that I am most grateful.

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.