8.01.2021

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.

7.26.2021

red wine and adrenaline

her hair fell in wet, ropy waves over her shoulders. having just emerged from the water, she looked like a mermaid in the filtered gleam of a waxing moon. earlier, before sunset, a great blue heron had flown over. she said it was a good omen. so too, i thought, was the double rainbow which had arched in the northeastern sky from amid a bank of pines. 

we picnicked atop a slope overlooking an inlet. the smell of cut grass and cows drifted across our table. we splayed out a feast between us—baguette, homemade pesto, purple heirloom tomatoes, triple cream and goat cheeses, green olives, dry salami, salt. we drank red wine from clear plastic cups. exploring the nuance of everything, we talked about the pandemic, the variants and vaccines. we spoke of our children and about the saintliness of them. we laughed and chatted for hours, catching up on eighteen months of each other's news.

as the sun began to sink into a cloudy horizon, it glinted gold and silver. well sated, we left our provisions behind and, drinks in hand, began strolling around the nearby campground. we passed a man propped against his trailer singing and strumming his guitar. kids were riding bikes, playing tag and squealing. though dusk began to fall just as our path veered into the trees, we decided to keep going. as she stepped into the shady wood, the orange sun set her aflame. she was glowing.

the path led us down to a tiny lagoon where the pink clouds reflected in its pool. we continued on, passing more tents, trailers, cottages, and one yurt skirting the inlet. by the time we hit the dirt road near the farm, the sky had darkened and the rising moon shown through the clouds. we had walked nearly two miles. back at the picnic table, we gathered our things then tiptoed down the dewy hillside to put them in the car. our last stop was the wooden bridge spanning a narrow tidal inlet. she told me of her plan to jump from the little platform built on the back of the guard rail. she'd done it countless times before. years ago, i'd seen teens launch themselves from it on hot summer days. it looked to be about ten feet above the tide. in the ensuing darkness, the sun's warmth still radiating from the wooden planks and railings, she began undressing until she was just in her skivvies. in a blink, she leapt and disappeared into a froth.

upon surfacing, she exclaimed how magnificent the water felt, adding that it was not too cold at all. i trusted her. she wanted me to jump. only problem was that i was going cowboy (aka, commando, for you east-coast types) and two folks were approaching. but it was sufficiently dark, and she offered to shield me with her towel. i climbed over the railing, peeled off my shoes and socks, t-shirt and jeans until all i had on was my chambray bra, then i stepped to the edge. she assured me the water was deep enough to leap. i had every reason in the world to believe her, and i had leapt off of cliffs and bridges and diving platforms as high as thirty feet before.

flying through the air, crashing into the water, having it envelop me like a liquid glove, felt exhilarating. it had been years since i'd been in it. salt filled my mouth and stung my eyes, reminding me of summer vacations to pacific northwest beaches as a kid, and of body surfing at beaches in san francisco, hawaii, kenya, tanzania, and swimming in the waters off of turkey and brazil. the tide was strong, but not as strong as i, so it was easy making leeway to the rocky bank, which i then scrambled up, dripping with sea water.

back on the bridge, i toweled off as both of us smiled and giggled about our adventure. we walked barefoot to the car laughing so hard we could have wet our pants—that is, if we had any on!

on the drive home, windows open to the sultry air, we splashed through puddles from an earlier rainstorm which had completely missed us. the white eyes of a baby raccoon peered into our headlights from the shoulder, and a tiny frog leaped across the road. i was smiling inside and out. it had been one of the nicest evenings in recent memory, if not my entire life—a magical one, really. for the most part, i'd forgotten about calvin and his (our) miseries. forgotten about imposed limitations. forgotten about stresses and pandemics. and as we hugged goodbye, the afterglow of red wine and adrenaline still pulsing in our veins, we promised to do it again.

7.23.2021

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. 

7.19.2021

mad about you

i'm mad about you. mad about those sea-blue eyes, your smile, and the little crescent dimple it makes. i'm mad about the way you look into my eyes when we're right up close. i'm mad about the way you hold my head and touch my face. i'm mad about the way you send me reeling. mad about the way you deepen all my feelings.

i'm mad about you. mad about what happened. i'm mad about the way the seizures and the drugs waste and rule you. mad about your suffering, your deficits, your mania, your biting and banging, your drool. i'm mad about the fact you can't speak. mad about the way you wail and shriek and moan. mad about where you send me when it's to a place i loathe.

i'm mad about you. mad about the way you age me. mad about the way you wake to slay me. mad about the way you box me in and limit me. mad about the way you consume me. mad about the way you can never leave me be. mad that i can't leave you, either.

years ago, in tears, i called a friend, searching for a trusted someone with whom to share my woes. at first she listened. then she made the claim—perhaps meant to ease my state—that the universe tries to find equilibrium. and though it's noble hoping, i'm fairly sure that isn't true; rather (thinking of calvin) random chaos rules. she hinted at my anger since your birth, then went on to speak of acceptance—of you. i told her i was capable of holding both emotions. later, in a message, she wrote:

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

i replied:  

i know. xoxo

that was the last i heard from her. funny how some people's universe works.

i accept you. yes. i'm mad about you, too. mad about the way you make me swoon. mad about your soft skin and freckles and locks of auburn hair. i'm mad about the way you make me laugh and rage and fret and weep. mad about the every way you make me think and feel and dream.

many moons ago.

7.16.2021

wicked mix

The call came in at 7:33 p.m., just as we were wrapping up dinner. Mary's voice was quavering on the other end of the line. I knew Calvin had had a seizure in her care. I felt sorry for all of us.

Michael had already paid the bill, so we and a friend were able to exit our picnic table and jet the nine miles back home. It had only been four days since Calvin's last grand mal, which was just four days after the previous one, which was only six days after having had three in thirty hours. In all, he's had nine grand mals in a month's time. That's nine too many, even among thousands of them in his seventeen years.

I'm not sure what is going on. Perhaps Calvin's epilepsy is progressing, having never been snuffed out. Maybe he has outgrown his Keppra dose or maybe it is making things worse. What if the THCA cannabis oil I've been making for nearly eight years just isn't hacking it anymore? Epilepsy is wretched. It's a moving target. Options are few and unattractive. Having mostly forsaken pharmaceuticals since so many have failed him, it seems they may be the only thing left to try—again.

One of the drugs we are considering is called Fycompa. It is one of the few antiepileptic drugs specifically listed for treating tonic-clonic (grand mal) seizures. Like all other anti-seizure drugs, its side effects are wicked; the list is long, and some of them can be dangerous, even lethal. Moreover, since Calvin can't speak, it's nearly impossible to tell if he suffers many of these:

headache, dizziness, drowsiness, anxiety, lethargy, irritability, nausea, vomiting, stomach pain, bruising, weight gain, loss of coordination, hives, difficulty breathing, swelling of your face, lips, tongue, or throat, skin rash, fever, swollen glands, muscle aches, severe weakness, unusual bruising, jaundicemood or behavior changes, fear, panic attacks, trouble sleeping, agitation, hostility, aggression, restlessness, hyperactivity (mentally or physically), thoughts about suicide, severe dizziness, vertigo, lightheadedness, trouble walking, loss of balance or coordination, feeling very weak or tired, accidental falls, memory problems, confusion, hallucinations. 

No one would want to put their child on these kinds of drugs, but the alternative could be just as ugly. Calvin has tried nine antiepileptic pharmaceuticals—at one point taking a high-dose, three-drug "cocktail" (I hate the use of that descriptor)—starting when he was just a toddler. None of them worked to stop his seizures, and yet he has suffered both short-term and prolonged side effects. I have little doubt the drugs—especially the benzodiazepines—ruined his developing brain, causing permanent problems beyond the neurological anomalies present even before his birth.

So, before we reconsider another pharmaceutical drug, I think I should try reducing his Keppra. That may seem counterintuitive, but most antiepileptic drugs have the potential of exacerbating seizures, and it's probably not that risky since he is having so many seizures anyway.

If I sound exhausted, even peeved, it's because I am. At the moment, I'm not up, but I'm not down, either. I'm just in a kind of daze of feeling hopeless and lost. That's what having a child with epilepsy does to a parent.

But for now, Calvin is content hanging out with his us while recovering from yesterday's seizure. Later, a friend is coming over to shoot the shit around the fire pit with us. We'll tell funny stories and jokes, and I'll laugh until I cry in a wicked mix of emotions knowing that, despite our troubles, somehow we'll get by.

7.12.2021

running for it

saturday:

it's half past ten. just trying to get some sleep. there's a dense lump of tension, like a fist, lodged in my solar plexus. it feels electric, like it's vibrating through my entire being. its source is a mix of exasperation, helplessness and dread. sadly, it's all about calvin, who is out of sorts in the wake of two epileptic fits. he keeps banging the wall behind his bed. all i want to do is make a run for it.

calvin has had eight grand mals in thirty days. that translates into about half the month spent sleeping on me and the couch. i wonder what else i can do about his epilepsy. so exhausting living with it. today i switched his cannabis oil from hybrid to indica, hoping it might offer him some respite. he's pretty spacey, but that's typical the day after a tonic-clonic. my next move is to reduce his keppra. my gut—and a calendar marked up with orange highlighter and black sharpie indicating seizures—tells me the keppra isn't helping.

this tension i feel is cumulative. seventeen-and-a-half years of it. i often wonder what havoc it might be wreaking inside me. it's why i sometimes feel the need to scream. have to let it out so it won't devour me. or seat itself as a cancer in my organs, bones or blood.

in a move to ease my angst (and get in better shape) i started running. got new shoes. ran three days last week. took a longish, back-roads bike ride. the accomplishments were nothing to speak of. pretty meager efforts, really. still, i'm hoping they will stick.

i wonder if running might serve as some escape—from a stressful life with a messed-up kid. from being pent up and stuck. from the gnawing sense of dread.

perhaps running makes me feel more alive—my limbs and lungs pumped up with blood and breath.

or could it be i'm chasing something? a different vista? an extended moment all to myself? the dream of better days to come? some serendipitous adventure? a challenge other than handling my son's severe and complex conditions?

after today's modest jog on the trails around the soggy fields, the fist inside my chest had dissolved. i plan to run again tomorrow. with a bit of luck, i'll see some sights, and chase away some troubles, angst and sorrows.

7.10.2021

every path i take

it had been just four days since calvin's last grand mal. still, i sensed it coming on. his agitation and mania. his restlessness and intensity. his peculiar noises and expressions. last night, while walking smellie along a familiar path at dusk, it arrived. it was the cusp of the new moon. i returned home to find my husband cradling a postictal calvin, who had bitten his check or tongue till it bled.

after the seizure, i spooned my sleeping child. wide awake, my hand on his chest, i reminisced on recent events: finally jogging the trails with my dog; nice, longish visits with a few, familiar, back-roads strangers i had finally and very happily met; a kind invitation from one of them to sit by the sea; chatting under stars and strings of lights on a girlfriend's back deck; sipping the delicious blackberry, mint, gin cocktail her daughter had concocted; meeting an unknown runner who stopped mid-workout just to visit with me and calvin on the sidewalk; four separate gatherings with new and old friends; my glorious bike ride to simpson's point and back again; along the way, hearing a hermit thrush's haunting song; eating lobster rolls and corn on the cob; a conversation about pity and compassion with my visiting sister-in-law.

finally, sleep arrived. like life sometimes, my dreams were vivid and difficult. at five o'clock, we awoke to a second grand mal and, when it was over, i crawled in next to calvin again. this time, shut-eye proved impossible. instead, i mused on recent expressions of compassion and love from friends and strangers:

i've had deep sympathy for you from day one; i think about you and calvin all the time; i couldn't handle your situation with the grace you show; i wish there were something i could do; i love you then now always; you break open the heart and the stories; thank you for the little window into your world; wish that the pain i genuinely feel for you could somehow make your days easier; all you want is to live in your full motherhood and not as a caregiver, too. not too much to ask, my friend. not at all. 

knowing i'd be mostly stuck indoors for the next day or two, i laid awake imagining travels, like my next back-roads adventure, a bike ride to the rise where i can see the salt marsh meeting the sea, hearing that hermit thrush croon, rolling up my jeans and wading into the bay at simpson's point, running the shaded trails on a gorgeous morning like today. most of all, receiving love and compassion from friends and strangers along every path i take.


7.06.2021

too good to be true

These are the kinds of days I dream of, but alas, none of the following is true:

this morning, to my utter disbelief, calvin said the word, "mama" for the second time in his life, having first said it when he was just eighteen months old, before the seizures and the drugs meant to stop them began. it really came out of nowhere. hearing him say it was nothing less than astonishing. then, he proceeded to get out of bed all by himself; we've been working on that skill for awhile and it seems to have finally paid off. his balance was so good we didn't have to spot him coming down the stairs, and when he sat down for breakfast, he used a spoon to eat his yogurt without any help at all! moreover, he didn't cough or sputter while eating or drinking, nor did he toss his sippy cup on the floor like a toddler; he set it right down on the table like we've been teaching him for fifteen years to do.

after breakfast, he clearly signed "all done," brushed his teeth pretty well by himself, and got into his johnny jump up without much help at all. the day started out as one i'd describe as too good to be true.

recently, we stopped giving calvin his only pharmaceutical, keppra. maybe that is why he is so calm. he even sat in michael's lap for a good long time while being read his favorite board book, barnyard dance. for the good part of an hour, calvin played happily with his toys in the corner of the room. not once did he try to bite the bookcase or stare at the sun, so we were able to leave the bookcase uncovered and the shades up, enjoying the morning light streaming through the windows.

the reason we stopped giving calvin his keppra is that we wondered if perhaps it might be exacerbating his seizures. since his last dose, he hasn't had any signs of looming ones—no eye poking, no shrieking, no manic episodes, no intensity, no restlessness, no spaciness, no nothing. just a calm, happy kid with excellent balance and focus. he stopped drooling, too! it's unbelievable. 

this morning, the weather was gorgeous, sunny and in the low seventies, so we went outside. i was amazed that calvin walked independently around the yard touching the flowers, trees and shrubs without trying to eat them, then plopped himself down on the grass to rest. not once did he crane his neck to stare at the sun or put handfuls of twigs, mulch or grass into his mouth. this allowed me to get a bit of pruning done, knowing he was safe without my constant watch. he even pet smellie who came up and laid down next to him.

perhaps the most striking and welcome observation of the day has been how happy, calm, and lucid calvin seems. perhaps that's due to the lack of drug in his system or the absence of seizures. in any case, i'll take it!

And though none of what I just wrote is true, I'll keep on dreaming.

Photos by Michael Kolster

7.04.2021

freedom to me

freedom to me is to dance with reckless abandon. freedom to me is a good night's sleep. it's a stroll by myself down the street. it's the time and space to think and read and write and dream.

freedom to me is to be understood. to get to know and embrace different people. freedom to me is a place to call my own, knowing it isn't really mine at all—the beach, a wooded trail, a back road, a nation.

freedom to me is a stint without my son having seizures. it's a walk down the block without him balking. it's a day when he's unencumbered by the miseries which tend to stalk him. it's a week without him moaning and shrieking.

freedom to me is sipping from a mug of coffee or glass of wine in the garden. it's listening to music as loud as i want. it's having a spouse who loves deeply my crazy notions, jokes and idiosyncrasies.

freedom to me is to offer a big table. it's the ability to give. freedom means everyone has healthcare, can afford to pay their bills, live in safe neighborhoods. freedom to me is a place where people can love who they love, worship how they please—or not worship at all—live under a roof, have plenty of food, clean water to drink, a good education, body autonomy, safe streets. freedom to me is easy access to voting. it's living in a system void of all religious dogma, and a world without its extremism, bloodshed and sanctimony (people don't need religion to be good and do the right thing.) freedom is the right to peacefully protest inequality, bigotry, oppression and autocracy. freedom to me means democracy.

freedom to me is a big sky stretching over an expanse of sea. a vista. a view to the horizon. clean air to breathe. the feel of wind in my hair, rain and mist on my cheeks. 

7.02.2021

on the road again

After several days stuck indoors, we got on the road again. It was a good day. Calvin woke up happy, ate well, smiled plenty, laid in my lap calmly in the heat and humidity. On our ride, I saw the Carhart Man with two of his dogs. I pulled over and introduced myself. Told him about Calvin and our year-plus of back roads travels. In asking about his third dog, he told me he had recently buried it. At seventeen, it had finally given up the ghost. I expressed my condolences, then added my gratitude for his unwitting help in getting me through the damn pandemic with his grins and nods. He smiled broadly when he said it made his day knowing he had eased my way. People are good. So many are understanding and compassionate. Despite my troubles, I feel so fortunate.

As we continued on, Calvin remained content, having mostly recovered from three recent grand mals in two days' time. We drove along at a pace best for taking in the scenery. In a nearby field I saw little kids kicking soccer balls. From afar, I think I spotted the red-headed neighbor boy—not much older than Calvin—whom I've watched grow from a sweet little kid into a fine young man. My eyes stung and I tasted salt at the back of my throat seeing him shepherd the other children around. So many missed opportunities, I thought to myself, wiping one eye with the ball of my thumb.

Driving on, I noted the billowy, peachy-pink willows which are still in bloom, though fading soon. Discovered early hydrangeas blossoming like balls of popcorn in creams and blues. Saw massive stands of bright-orange day lilies flanking the road. Watched thick summer canopies of maple and oak wrestling with the wind.

I took the straightaways and curves slowly. I made an impromptu visit to a friend's house. She wasn't home, so I left her a happy face made of two sun-bleached oyster shells, a rock, and a banana-shaped leaf for a mouth. I stopped and watched a bay tossed into whitecaps by the gales. I saw a blue heron and one brave wader shoulder-deep in the sound. It was so good to get around. Good to get back on the road again. To get out of the house for a spell.

6.29.2021

wonder

my little wonder brings me up and brings me down. he makes me smile. he makes me frown. he's the sweetest kid in the world. he's cute and handsome, incredibly peculiar and so messed up. sometimes he's unbearable. always, he makes me think and feel deeply. i wonder what emotions he's capable of feeling.

i wish i could get inside his head. he's impossible to figure out. i wonder what he dreams, wishes, needs, wants. i wonder what, if anything, he worries about. does he know he's treasured, resented, loved? does he have those feelings about us?

what does he experience when a seizure is coming? pain? panic? fear? euphoria? this morning he had his third grand mal in just thirty-one hours. in our grogginess, we decided to give him the rectal valium to stop the cluster. so difficult to know what is best when it comes to these drugs. what's too little? what's too much? have the drugs actually caused this clusterfuck? what if we had never given them to him at the start? would he still be seizing after all these years? have the drugs ruined our son? these are things i so often wonder about.

today will be spent parked on the faded green couch. my boy is mostly out of it—listless, unsteady, feeble. he's silent, calm, needy. my neck is aching. he keeps craning his toward the sun. i sense he's not yet out of the woods. more seizures coming. i can feel it in my bones. no wonder i so often come undone.

perhaps today i'll get some rest. maybe read a little. write some. stay out of the heat. cuddle my son. try to move beyond the worries that keep me up at night—regret, failure, lost opportunity, despair, dread. i'll keep wondering what goes on inside my little boy's head.

6.27.2021

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.

6.22.2021

letting go

i walked to the fields and laid in the grass. the sun was still out. the air had cooled a bit. smellie was off leash sniffing what there was to sniff. i was grateful she wasn't eating vermin or shit. a cool breeze lifted the warmth from my back and neck. it felt good to sink into the grass. i wanted to linger there—let go and lose myself in it—but i only had five minutes before i had to be back at the crib.

calvin was out getting ice cream with mary. blueberry flavored, i found out later. during school break, she's helping me a few days a week. wednesdays are reserved for date night. michael and i plan to go out or invite ourselves over to your house. i kid you not.

calvin has had a couple of good days in a row. he was happy as a clam in the car today. cool as a cucumber, which made meandering the roads easier. it has been awhile since i've seen the carhart dog walker on our car rides. i wonder about him and hope he's okay.

in my free time i'm getting some gardening done. feels so good to lose myself in the earth. kinda like i did as a kid. i need to get lost more. practice letting go. i feel like i've forgotten how to do it. i'm so intent on everything. don't like to be out of control. don't like to stray too far from home. gotta ride my bike since it's been fixed. maybe i'll pedal the back roads. go check out that pond on rossmore. open air. new perspective. maybe i'll get lost pondering it.

6.21.2021

gathering again

it was a tough call to make: whether to still celebrate if it rained. in the end, we went ahead. luckily, it only sprinkled. thanks to vaccines, a bunch of us gathered to commemorate some semblance of normalcy amid a rampant pandemic. nearly two years had passed since the last time we'd come together like this. our guests' presence, plus a shot of maker's on the rocks, popped me out of my day's doldrums—a despair brought on by calvin's premature seizure, a gorgeous day having been trapped indoors with a listless kid, the dread of more fits, and doubts about the evening's outdoor event.

thankfully, or so it seems, BYOEs (bring your own everything) work perfectly these days. it's easy for everyone. we just provide the venue. the bawdy jokes and natural banter between friends and neighbors flows like wine from a jug. handfuls of chips were chomped. drinks were drunk. a big fire was lit. mosquitoes bit arms and legs. the house being off limits, folks got just a tiny bit wet. some of us let ourselves get ever-so-slightly tipsy.

i talked and joked with old and new friends about my fantasy to be a backup dancer-singer for an eighties band, about swimming nine miles in a day versus running marathons, about documentaries and other film genres, about southern versus northern racism, about poverty, perennials, farming, sailing, pennellville road, and a bit about calvin. i gave hello and goodbye hugs to all of our guests. everyone seemed to have a nice time. all but one guest left by ten.

with some help from our favorite straggler, i cleaned up a bit then gave my husband and friend goodnight hugs and kisses. a weary smellie followed in my steps. entering calvin's darkened room, i checked on him. he was sleeping soundly in his bed. as i crawled into my own, i saw the silhouettes of my husband and our friend against yellow flames and red embers. the smell of smoke and sound of laughter drifted faintly through the open windows. i felt so relaxed and comforted. the worry and despair that had gripped me earlier had dissolved into the ether. i fell asleep recalling my lovely friends' faces, and of those whom i'd just met.

6.17.2021

all i want

all i want is to lie quietly for awhile on a blanket outside with my son. all i want is for us to make it all the way down the block. all i want is to hear him tell me what is wrong. all i want is for his seizures to stop. all i want is to never give him another drug.

all i want is for him to stop staring at the sun. all i want is for him to drink without spilling it down his chin. all i want is to be able to ease his pain. all i want is to better know what he wants. all i want is for him to eat with a spoon. all i want is for him is to chew well enough not to choke.

all i want is for him to tell us what happens at school. all i want is for him to dress and undress himself. all i want is for him to stop wetting the bed. all i want is for him to stop biting and drooling on every surface in the house. all i want is for him to stay calm enough for me to read him a book.

all i want is to sleep four or more hours without getting up. all i want is a day to myself. all i want is for him to run around and play by himself. all i want is for him to walk without my help. all i want is for his manic outbursts to stop. all i want is to know what is inside his head.

all i want is to feel more like i once did.

Photo by Michael Kolster

6.15.2021

impressions

i wake to the sound of rain. it came down last night for a good long time. drenched everything. the windows were open, but the wetness stayed out—pitter-pattering on leaves, soothing some of my sorrows, quenching the earth. somehow offering hope. a clean path forward.

it's half past nine. the house is still and quiet. the sky is white. calvin's bus pulled to the curb a couple of hours ago. thankfully, he got on it. yesterday, my in-laws headed south. it was a good visit. two years passed since we'd seen them. damn pandemic.

i slip into my rubber boots and clip smellie on the leash. once at the fields, i let her run free.

watching her go, i think about greens—these grassy expanses, my eyes, the pretty garden, the boots on my feet, my inexperience way back when with a newly-diagnosed epileptic kid. my initial naivete about doctors, hospitals and drugs. his first benzodiazepine when he was just three years old. enough to make me sick.

i think about time and numbers—three a.m. wake-ups. a week and a half since my son's last grand mal. four days of unbearable mania. one exasperated mama. several meltdowns (mine and my child's.) three long car rides to relieve our misery. one school day left until july twelfth. seventeen years of living with this tragedy, loss, fear, dread, pain, frustration, resentment. relatively few happy, calm, relaxing moments with my child. his limitations and halting progress. his impossible behaviors. the intractability of his seizures.

the elixir is always forgiveness.

i think about spacetime, motion and experience—the smallness of a room, house, or car, even when it's moving. the medical and drug information packed inside this weary head. a sorry situation with little room to adventure, roam or travel. countless promises of parenthood unfulfilled or broken. infinite nagging questions, most of which don't require answering. space only to dream and remember back when life was so very different, back when i was wild and untethered. i remember a conversation and subsequent blog post i wrote about freedom. i wonder now if impressions are any different.

i think about bittersweet images—seniors in caps and gowns holding their diplomas, proud parents beaming. little swimmers wading in the bay. campers and travelers taking weekend trips. sunbathers at the beach whiling away the hours. hikers ankle-deep in fields of buttercups or at the edge of a precipice. teenagers bicycling or taking driving lessons. empty-nesters sitting in the shade reading books.

as i cross the grassy field, i turn to see a single trail of darkened footprints. they weave and loop where i've swerved and circled. i look down and snap a photo. except for smellie, i'm alone. i'm grounded, yet can move willingly and with purpose. i consider the serpentine path in my wake. it's fixed. cannot be erased. and then i eye the clear expanse before me. it's green, untouched and wide open, awaiting my singular impression. my arrival, no matter which turns i take.

6.13.2021

success

To laugh often and love much;

To win the respect of intelligent persons 

and the affection of children;

To earn the appreciation of honest critics

and endure the betrayal of false friends;

To appreciate beauty;

To find the best in others;

To give of one's self;

To leave the world a bit better,

whether by a healthy child,

a garden patch or a redeemed social condition;

To have played and laughed with enthusiasm

and sung with exultation;

To know even one life has breathed easier

because you have lived.

This is to have succeeded.

 

—Bessie Anderson Stanley 

6.10.2021

weather, scene and mood

Since Calvin went back to school, I've sorely missed my morning drives. Miss my adopted lonely back roads and familiar faces of strangers. Miss the nods and smiles and waves of bikers, dog walkers, runners. Miss seeing the wild turkeys, hawks, and jays.

The Kid and I went for a drive yesterday. Since last time, the landscape I've grown accustomed to has changed. Trees are fully leafed out now. Some streets have been repaved. The tangled, citrus-tinted azaleas I discovered last June on Bunganuc bloomed again. It's nice revisiting and remembering them. Recalling the start of my yearlong love affair with the road—its hills and dales, movement and nuance—feels good. Nostalgia of a certain time and place is alluring. What a curious and inviting thing that is.

Summer arrived too soon. Ninety-degree days, mugginess, bugs, and biting spiders. Rhododendron and azalea blossoms melting in the heat. Clouds of pine pollen hanging thick like smog. Sun-lit particles drifting sideways in the wind. Yellow blotches and puddles forming on leaves and streets after a rain. Everything looks dusty and a little bit strange.

My in-laws arrived from Florida. It has been two years since we've seen them. To have them here is sterling. I hope to show them the back road scenery in the next few days. Drive them to my favorite places. Ride the rises and hollows. See the vistas and bridges, the spots that, along with writing, have kept me (mostly) sane during this rampant and endless pandemic.

Yesterday, bunches of little kids were riding their bikes to Simpson's Point. Seeing them felt bittersweet (Calvin and I miss so many of life's pleasures.) A handful of bathers waded out and dipped their shoulders into the shallows of the bay. The scene looked like a picture from olden days—folks in swimsuits and sunbonnets just cooling off when there's no comfort in the shade—like back when I imagine life was simpler. Something about the pandemic took me there, too. To a simpler time and place of few distractions. Just weather, scene and mood.

Simpson's Point

6.08.2021

truth be told

don''t diss me. don't dismiss me. don't chide me. don't deride me. don't lie to me. don't belittle me. don't try to fix me. don't attempt to remake me. i'm not my parts. their sum is my whole. forgive me. listen. reflect. examine. review. express regret. don't doubt me. don't discount me. no, i'm not too sensitive or solemn. too stupid or foolish. too naive or unversed. this is who i am. i am good. don't get defensive. don't second guess me. imagine what's inside me. walk in my shoes. live a day with my load. don't assume. accept my indignation. if only you understood. don't misconstrue me. don't disabuse me. don't try to unpeel me. instead try to feel me. please don't curate me. i'm not a project. i have faith in my own works. take care not to bruise me. if i tell you it hurts, know that it's true. don't presume. don't try to justify. consider your part. practice saying i'm sorry—those foreign words. it's not hard. intentions are not everything. sometimes they're confused. if you love me, accept my perspective. it's simply my truth.

Photo by Michael Kolster

6.04.2021

the remains of the day

My Wednesday morning mood felt vibrant as the blossoms in my garden. I had picked one of each color and set them on the weathered arms of our Adirondacks the night before. By sunup, they were still lively. Perhaps my cheerful state was a remnant of the previous day when I had laid face up in a field of grass and watched gulls gliding way up high. If only for a moment, I had melted into the earth of my childhood, as if back in my faded floral swimsuit, coconut oil slathered over my golden arms and legs. Watching bumble bees mine the clover. Studying ants and beetles climbing over my hands. Seeing small aircraft soar in the sky. Not a care in the world.

Later that morning, I made an impromptu visit to a dear friend. I sat in the car with the windows down, he in a white plastic chair. We chatted in the half-shade near his barn. In the back seat Calvin chewed contentedly on the ear of his crocheted rabbit. The remains of the day seemed full of promise: I had hoped to host another friend for coffee in the garden; Michael and I were going to put Calvin in the stroller and take an afternoon walk along the river; I was thinking of throwing down some mulch. None of that came to pass because Calvin had several meltdowns which led, as they often do, to my own.

By midafternoon, Calvin's little black cloud had descended upon me. I became vexed dealing with my bat-shit crazy child. No clue as to the source of his misery. It's times like these when grace sometimes goes out the window. I felt tight, impatient, haggard and hollowed out—a shell of myself. I caught a glimpse of my face in the bathroom mirror. What I saw staring back at me was fatigue, frustration, resentment and ugliness, the kind seated more deeply than wrinkled skin.

Finally, Michael came home to hang out with Calvin so I could take my late-afternoon walk with Smellie. On the narrow path that I usually choose was a couple headed our direction. Ever-so-slightly stooped and probably in their eighties, they each grasped a walking stick. So as not to risk Smellie toppling them, I veered left of the cyclone fence. Midway down the long divide we approached each other. I greeted the couple and asked how they were doing. From the opposite side of the rusty fence they introduced themselves as Alice and Kent, out-of-towners here for a stint. We stood and visited for twenty or thirty minutes, speaking of the pandemic, graduation parties, and vacation rentals. They mentioned their sons, both of whom graduated years ago from Bowdoin. When I revealed my age, Kent told me I was still very attractive. Blushing, I thanked him for the compliment. Little did he know how much it meant to me that day.

They went on to ask if I had children, so I told them all about Calvin. Sorrow crept across their faces when I described him—seventeen, nonverbal, legally blind, incontinent, cerebral palsy, intractable epilepsy. They wondered how I coped. I mentioned that writing and gardening are my therapies. Having expressed interest in reading my blog, they gave me their email addresses. I invited them to stop by and see my garden. "It's just up the street," I said, "so much is in bloom right now." They assured me at some point they would visit. I wanted to reach through the cyclone fence and hold them in my arms.

When I got home I wrote to Kent and Alice telling them that they had made my day. Kent wrote back within the hour saying:

I am not sure I could ever provide the love and care you have given your seventeen year old son, Calvin. You are a real inspiration and through it all, you have carried on with a positive attitude and good sense of humor! Nice going!!

I remembered that I had told Alice and Kent that I came by my (mostly) upbeat attitude by way of my mother and hers. And as the remains of the day dwindled, I looked out over my garden so full of pink and purple blossoms—my mother's favorite colors—my heart bursting with gratitude for simple encounters with loving friends and strangers just when I seem to need them most.

5.30.2021

commencement

This weekend we had a houseful of people, just as I sometimes like it. We haven't done so in many moons. Michael and I were honored to provide the venue for the graduation celebration of one of his Bowdoin College photography students, John-Paul, aka JP.

On Friday, JP and his mother Sheila, his best childhood friend Marcus, and his girlfriend Andrea showed up after having driven twelve hours from West Virginia with pretty much everything but the kitchen sink, and began making a feast for Saturday's fifteen-plus guests. All of us were fully vaccinated. It was delightful to have such pleasant and loving company bustling mask-free around the house while I cared for my sick kid. While listening to FIP French radio, I watched things unfold from my perch on the green couch with Calvin cradled in my lap.

The house filled with the savory aroma of chicken sautéed in garlic, cilantro and other herbs. Seemingly without effort, Sheila and her crew of sous-chefs produced an incredible spread: pollo Ezequiel (as far as I could tell, all-dark chicken pieces breaded and fried, then stewed with herbs and Kalamata olives), asparagus spears topped with chopped hard-boiled eggs and tomato under a honey-lemon drizzle, poached salmon with a sour cream dill dressing, and couscous with dried cherries.  

Throughout the day, Calvin gave hugs and sat contentedly in JP's and Andrea's laps. Although JP is only four or so years older than Calvin—both sporting a bit of facial hair—the difference between them is legion. JP, who is probably six feet three inches tall, lifted Calvin easily into his lap and held him sweetly, as if Calvin were an infant or toddler brother. I couldn't help but consider that at Calvin's age—seventeen—JP had likely been looking into colleges to attend. Life really doesn't pull any punches, does it?

Yesterday, after a frigid and rainy outdoor commencement—which included honorary degrees given to Bowdoin Alumnus and civil rights activist DeRay McKesson, infectious disease specialist, Dr. Anthony Fauci, NASA astronaut and Mainer, Jessica Meir, and a posthumous award to civil rights activist and Freedom Rider, William Harbour—JP's family, friends, and few of his favorite professors and a dean began arriving. JP's uncle Russell had caught a last-minute red-eye from California to be here; it was so good to see him and Sheila again. JP's first cousin once removed, Carleton—a man who, like Russell, was lovingly described by Sheila as one of JP's dads—made the long drive up from North Carolina. JP's godbrother, Addy, came up from NYU. It was a splendid gathering of folks sharing amazing food, drink and cake in celebration of a special someone most beloved.

Calvin did well amid Saturday's hubbub despite not feeling his best self; I think he, like me, enjoys a good party. He also gave some uber-long hugs to Russell, Carelton, Marcus and Tricia, who were the most willing to risk their necks in his embrace. I made a handful of new friends who I hope will come back and visit us in the future.

Today, the house has been quiet. The rain, which retreated after the graduation ceremony, has returned as a lingering drizzle. The sky is white, the leaves in the garden are wet and shiny, and the mulch is damp and dark, all of which make the rhododendron and azalea blossoms glow. I'm missing my new friends and thinking about our conversations and the fun we had together. Calvin is upstairs chilling out with his baby toys and playing with his bare toes. He has no worries about studies or college, commencement or the challenges of new beginnings or tomorrow. All he and we have are singular moments. And this weekend there have been some good ones.

Photo by Andrea Tyree

5.28.2021

in my path

"Why did you help me?" she asked. 

"You were in my path," he replied.

Those were the words uttered by the main characters in a movie I recently watched called, Land. More than anything else in the film, that snippet of conversation struck me, triggered me into thinking about everyone who has helped me survive and thrive in this life, particularly since Calvin's arrival. 

Countless people whose paths I've crossed came to mind—everyone from my husband and extended family to my childhood and college friends, teammates, and the swimmers I coached way back when. I thought of former boyfriends, colleagues, roomies and besties from Seattle, San Francisco and Maine. I considered my husband's colleagues and former students, Calvin's doctors and nurses, our lovely neighbors, and the clerks at the grocery store. As I write this I think of the friendly strangers I've encountered by way of this ten-year-old blog, and while driving the back roads during the pandemic. Every single one has helped me get through this difficult life of raising a disabled child with an impossible, chronic condition.

Perhaps it was you who held my elbow or hand while I laughed, wept or wailed. You might have silently listened to me grieve. You may have offered to do my shopping, cooked us meals or left goodies on the doorstep. Perhaps you've brought me flowers, written me kind and loving sentiments in a hand- or type-written letter, email, message or text. You might have hugged the breath out of me just when I needed it most. You may have unwittingly buoyed me in the fleeting moment you ran, skated, strolled, drove or biked past.

And then, of course, there is Calvin, my peculiar little boy who has helped me—bettered me (mostly)—in myriad and indescribable ways.

In return, I certainly hope I've helped you, friends, loved ones and readers, in some small ways, if only by a few written words or by something as simple as a photo of a field full of dandelions dipping into the bay.

5.24.2021

heartbreak kid

awake since quarter of three. worrying about my kid and the bad spell(s) he's been having. four grand mals in two weeks. two within four days. impossible behavior between seizures. bleating all goddamn weekend. no respite from his bellowing, even on our drives. his shrieks are unhinging. i roll up the windows so as not to startle bikers and runners passing by. nothing we do seems to help soothe or fix his affliction. it's relentlessly heart-rending. impossible to imagine how he feels inside.

i can't fall back to sleep. i get up for a drink and to pee. i see the waxing moon in the window frame. i understand its gravity as satellite and omen. i try hard not to resent the orb slung low in the southwestern sky. after all, it has no interests or designs. just glows there gorgeously, stars seemingly nearby.

slipping back under the covers, i worry about my sleeping child. i feel the seizure coming. like a perfect storm, everything has aligned—the blustery weather, the dramatic change in temperature and barometric pressure, the full moon just days ahead. the lord works in mysterious ways, some people claim, but only when it's well-timed. i don't find religion helpful or convincing. i feel the world would be better off without its sanctimony and warring. that's partly why i left it behind. calvin is living proof we don't need religion to be decent, loving and kind.

at three-thirty, the seizure hits my kid. at four o'clock, from the comfort of calvin's bed i hear a cardinal's first chirps. sunup is imminent. i stroke my son's head. in the dark, i picture him—his creamy skin, auburn locks, huge blue eyes with dabs of amber, noble nose, full lips, straight white teeth, slender frame, broad shoulders, sturdy back, flat tummy, little muscley pecs. i let my imagination wander—if not for calvin's brain anomaly causing his limited vision, wordlessness, awkward manner, sounds and gait, relentless seizures and side effects, calvin might have been so many things. if events had been different, he might have been a talented athlete. he has it in him somewhere. if things were different, he might've been a good student, artist, helper, activist, advocate, friend. no doubt he would have been quite the looker in the way of ordinary kids. my calvin might've been a heartbreaker. right then i stop imagining and realize—he already is.

one such day a year ago

5.22.2021

saturday gratitude

a rare, decent night's sleep. stovetop espresso with warm milk, as always, ready and waiting. a well-seasoned cast iron pan. jammy eggs with sea salt fried in olive oil (my rendition.) gifted loaf of ta's homemade bread for buttered toast.

early-morning backyard stroll across freshly-cut grass, mug in hand. fothergilla and other flowering shrubs going absolutely nuts. the mesmerizing scent of double-white russian hybrid lilacs. amazing azaleas in at least five blush and blazing colors. stalks of purple alliums exploding like fireworks in the perennial gardens.

walking wooded trails with smellie. running some of it, even in jeans. shedding winter layers. feeling lighter these days. bits of grey hair coming in wavy.

driving on quiet, winding back roads. picking up speed up and down hills. spectacular vistas over my shoulders. snowy owl perched on a chimney. smiles and waves from friendly strangers. blasting david byrne's talking heads over calvin's shrieking one. curious cows and calves grazing silently in a roadside pasture. (some) maskless people frolicking at a nearby farm. exchanging enormous smiles with a gal riding her fatbike down a dirt road.

covid-vaccine freedom-windows. calvin's school, bus driver, aides and teacher. getting to know newish neighbors. apple blossoms. dandelion fields. flowering chestnut trees. compelling books and films. forgiving son and husband. gatherings again! seeing friends' lovely faces close-up. loving buddies who understand me. bear hugs from some of my besties.

laughs. tears. dirty jokes. expletives—all among friends.

red wine and blonde redhead. finger-licking seared lamb chops and baby asparagus. michael's creamy garlic mashers. gingersnap ice cream in a waxed paper cup. my little wild turkey in jeans and a t-shirt, even though he sends me reeling.

5.19.2021

war zones, torture, and safe havens

I've heard it said that sleep deprivation and the recordings of crying babies are used as torture on prisoners of war. Having survived both for seventeen years, I have every reason to believe that's true.

Monday was gorgeous. Blue skies and plenty of sun. No breeze to speak of. Trees leafing out in apricots and greens. And yet melancholia had its grip on me as it does when things begin to feel hopeless, which a string of not-so-good days for my son can do to me.

Calvin's behavior has been an ongoing test of my emotional stamina. I guess that's nothing new. I suppose it's the cumulative years of hearing him moan and shriek and cackle madly that makes life with him at times so hard to bear. I'm no veteran of actual war, but I wonder what being Calvin's mother has done to me—the war zone of sleepless nights, the shell shock of repeated seizures, the dread of the next attack, the enduring din of his misery, the relative inability to quell his unrest, the fear of him succumbing to the enemy. Since Calvin's epilepsy diagnosis when he was two, I've become slightly jumpy. I'm tighter than I used to be. I'm sometimes prone to the rapid-firing of expletives. I have nightmares about him seizing. I both love and resent my little captor. I imagine escaping this imprisonment. I wonder how he endures his own.

And other things trouble me. Like the moment when I turn my back and Calvin crams half an over-ripe banana and some of its softened skin entirely into his mouth. Like so many other items—twigs, grass, rocks, the rubber stopper and metal catch in the bath—my heart pounding, I fished it out. Like a foot soldier, I'm forever at a heightened state of awareness, can never let my guard down in case of an ambush.

And there are times like today when Calvin won't stop carping like some wounded thing caught in a trap. Nothing I do helps. I'm sure it's because a seizure is on its way. Nevertheless, to hear him is torturous, and so too is feeling this mix of pity, self-pity, despair and contempt. It's times like these that feel so dark and bleak inside, even when the sun is out.

So Monday, after putting Calvin on the school van, I went for a drive by myself. I drove west on some back roads which I hardly travel along. At the top of one rise I was able to see for miles—a rarity in this landscape. It made me recall the steep, high hills and myriad vistas of my beloved San Francisco—so many chances to see distant horizons, whereas from my current vantage point there seem so few. I let the winding roads rock me. I turned on the radio to listen to some tunes. I switched between stations until I found songs that moved me; I so want to be moved.

Back at home, before Calvin returned from school, I spent some time in the garden working the earth, meticulously shaping nature—mowing, planting, weeding, pruning. Gardening is a natural elixir for the helplessness I feel from having so little control over my son's condition. By noontime, my melancholy was gone, having been evaporated on the roads and dissolved into the garden—two safe havens from the torture of my kid's war-torn condition.

5.14.2021

secular blessings

another day spent inside these four walls. on a day meant for being outdoors. warm weather. summery skies. puffy white clouds drifting by. songbirds singing. breezes rattling our rickety windows. sun streaming in from the south. but the kid is sick and seizure-ish. he is in and out of it. sometimes in a trance. at others, clammy and panicked. i wish i could sleep standing up. good thing for windows and shades that pull down. good thing we're safe and sound. i think about gaza. good thing we aren't being bombed.

the garden is exploding in greens and pinks, ivories and whites. the viburnum's scent is splendid. i finally spied a hummingbird. there's beauty everywhere i look. trees in each window. they're alive with the wind. i wish i could join them in it.

i watch robins hunt for worms in the earth. cocking their black heads left and right. going in for the kill. sometimes the prey escapes. i follow calvin in circles as he crawls around the house between napping on me or the couch. he isn't eating or drinking. he's listless, but alive. we're trapped, but not imprisoned. there's a difference. we have room to move. nothing much to dread or fear. at least not of any imminent consequence. that's privilege. unlike too many in this nation. unlike the rest of the world. i count my secular blessings.

last night we had two guests inside the house. second time in over a year. it felt odd and amazing to say, come on in! embraces were made. tears were shed. laughs were had. glasses were raised. later, we watched a film about vampires called, only lovers left alive. again, i think of gaza. about the hatred of neighbors. the shedding of other's blood. the conceit of creeds. the lust for power. the grabbing of land on a planet we all call home. dogma is not god. that one is unforgiving. so much suffering and killing in the name of religion. ignorance and conspiracy theories abound. cowards become deceivers and demons. how hard is it to love others different from ourselves?

outside now the skies darken. dots appear on the asphalt. it's sprinkling. our roof is good. our house is solid. we're warm and dry and fed. i hear only my dog snoring, my son breathing, cars passing, small aircraft high in the clouds. there are no mortars or rockets. the streets are not bloody. the skies are not teeming. i enjoy so many secular blessings—hope, joy, luck, love, health, safety, forgiveness. with my boy in my arms, i find i can sleep while sitting.

5.12.2021

weather report

Written yesterday, in the hours before Calvin suffered a grand mal:

Thanks to his Covid vaccinations, Monday was Calvin's first day back in school after more than a year. It was a good day for both of us. Calvin kept his mask on well enough to roam the high school's hallways with his aides. I spent the morning working in the sunny garden accomplishing most of what I had set out to do—which was a lot—on my first half day without my kid in tow. When Calvin got home at noon, we strolled around a bit before he led me to the car and patted its door, seemingly indicating that he wanted to go for a ride.

We visited our usual haunts—Pennellville, Simpson's Point, Rossmore, Wolfe's Neck, Mere Point, Bunganuc, Macquoit. Along the way, I stopped several times by the side of the road. I spotted a red fox, the sun in her eyes, squinting at us from a grassy slope. We greeted a couple of muddy clam diggers just after their back-breaking harvest. I chatted with two wildly friendly, hip, young, pierced, tattooed lawn care workers, and found myself wishing I could call them friends. I watched a woman unload perennials from the back of her car. We got caught in a fleeting squall.

This time of year is especially beautiful in Maine. The temperatures are mild and the air is dry. The trees haven't reached full foliage, so their branching is still apparent, unlike in summer when masses of green leaves limit one's sightline. The delicate yellows, greens, reds and ocher buds of spring trees are a softer, subtler version of autumn and are, in my opinion, more gorgeous, especially when sunlight illuminates their canopies after a rain.

Today, Calvin had an okay day at school, but something's bothering him. He's a bit unhinged, plagued by manic outbursts and eerie silent spells. A perfect storm is brewing what with the new moon's gravity, the low barometric pressure, and the fact that nine days have passed since his last seizure, which is a bit longer than of late. In other words, he's due. Hopefully, though, last week's increase in his bedtime dose of CBD oil will allow for longer stints between fits. In the past thirty days he has had "only" four grand mals, which is better than the six-plus grand mals which have been occurring in any given recent month, so maybe it is helping. Hope springs eternal.

Despite Calvin's outbursts, our drive was mostly relaxing and allowed me time to reflect and come to some realizations: having Calvin back in school isn't nearly as angst-provoking as I feared; car rides are nice any time of day, despite that I already miss seeing a few of my favorite, familiar, back-roads regulars; though sometimes windy and cool, late spring is an amazing time to be in Maine; getting vaccinated is an uber-liberating chance at life back in the real world; the CBD oil appears at a glance to be helping to quell some of Calvin's seizures. After nearly twenty years, Maine is growing on me by degrees.