10.16.2021

dreamscapes and seizures

deep into another autumn. again we're trapped at home. after a string of seizures, calvin isn't feeling well. i'm attempting to be grateful. trying to stay whole. feeling a mix of sorrow, anguish and resentment, frustration and impatience. reminding myself i'm only human. striving to grasp onto grace and hope.

last night, calvin had two more grand mals. how can he go nineteen days without one, then have four over three days in a row? that hasn't happened before. at least we're not in the hospital. in-between the ones last night, he was agitated and clammy. awake and restless for hours. patting the bed. banging the wall. extra cannabis didn't help. perhaps the new strain is the culprit. it's near impossible to know.

i barely slept a wink. when i did, my dreams were mixed and vivid. a long and winding one featured me and my boy. as usual, a lot went wrong. details of the dream are soon forgotten. what's left are impressions, like footprints on a beach. suffice to say, it wasn't pretty. those ones never are. in the second dream, someone i wanted was falling for me hard. the feelings were so real. i have frequent dreams of being in love—with ex-boyfriends, friends, strangers, and quite often movie stars! when i tell michael, he rolls his eyes and groans. in these and dreams of flying over land or breathing underwater, i simply will things into being so. just rise up on toes or dive below. float in and out of clouds and kelp and making love. i think these dreams are healthy. but calvin inevitably tears me from them. sometimes when he's seizing, or in moments just before.

that is how these recent days have dawned. from deep in dream to cold, hard consciousness, however groggy. ripped from splendid dreamscapes into reality's harshness. hard to start a day like that two mornings in a row. today makes three. it appears we may be headed toward a fourth.

wide awake, i cruise through recent photos. of trees and clouds, shrubs and seas. rocky shores. the landscapes, seascapes, skyscapes are magnificent. their beauty, raw. their awesome presence humbles my significance. autumn canopies wild with color as if combusting. sable waters laced with whitecaps, wild and churning. mackerel skies stretching like an ocean to forever. i trust infinity and nature. must let them lead me to surrender. like certain dreams, they set me free. make me whole. melt my sorrowful embers.

calvin just had another seizure, this a focal one. his dusky lips stitched up as if he'd eaten something rotten. i gave him a different strain of cannabis oil. one with more thc. we'll wait to see what happens. see if we can sleep tonight ... and dream.

10.14.2021

out of nowhere

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

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

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

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

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

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

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

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

Calvin going berserk at simpson's point.

10.12.2021

getting lost and forgetting

it has been seventeen days since calvin's last grand mal. equal to a stint in early march. closing in on a longer stretch last december. i wish my worry decreased along with his seizures, but i'm always on guard waiting for the proverbial shoe to drop. spending time in the garden and out and about helps me in getting lost and forgetting. it's good to try and focus on anything but my son and his wretched condition—birdwatching, watering, pruning a little, jogging, writing. anything that takes me places besides the stress of a disabled, chronically ill son.

the weather in october and september has been glorious. days on end in the low seventies. clear blue skies and gorgeous autumn foliage. this morning, i ran another of several 5Ks since my knee pain abated (i started too hard.) these days, i take it relatively easy. it feels good. running is so much more pleasant than swimming indoors. nice to look around at the world instead of at stripes on the bottom of a pool. and, i don't smell like chlorine all day long. it's nice to see friends. greet and wave to strangers. watch the landscape changing with the seasons. i can feel my lungs and thighs, glutes and calves getting stronger. when i melt a little more of this middle i hope to feet light and lithe like i used to. shouldn't take much doing. i'm lucky my body is still responsive.

early yesterday was perfect for a drive. calvin was home from school for the indigenous people's day holiday, so we took our usual ride. we ran into the carhart dog-walker whose name is john. we slowed to a stop and visited for a bit. he told me about his job and about the gorgeous flowering plants he is tending in his front yard, which are chock full of purplish blossoms, and then we said so long.

a mile or two down the road i saw a new friend i recently met. she's one of the regulars i've seen on my back roads car rides. her name is lorel and she does a lot of walking. i pulled to the shoulder and rolled down the windows so she could meet calvin and smellie. in the back seat, calvin was going a little berserk, but she didn't seemed fazed at all. probably in her seventies, she's fit and spunky, clad in leggings, an oversized sweater or jacket, nappy hat and colorful knit gloves. she told me of her violin playing and offered me some homemade pesto; i sense she makes it in bulk from basil she grows. i may have to take her up on it!

today, thankfully, calvin went to school again. he hasn't missed much this year. i put him on the bus around seven and he comes home just after two. today, i had enough time to walk smellie, run, eat a bowl of granola, install the bird bath my new friend and neighbor gave me, mow most of the lawn with our manual mower, shower, tend to email, and write a little—all good ways of getting lost and forgetting about my little enigma ... until he comes home.

10.10.2021

across water

this morning, i woke up feeling grateful. calvin hasn't had a grand mal seizure in fifteen days. that's the longest stint he's gone in months and months. maybe even longer. recently, i decided to be more liberal in giving him extra thca cannabis oil. i'm convinced it is responsible for this longer stint. i figure cannabis is a better idea than adding a second pharmaceutical drug plus its side effects. they're terrible.

this morning, i woke up feeling grateful. calvin didn't soak through his diaper and wet his bed. we were able to give him his morning medicines and go back to sleep for a spell like we did yesterday. let me tell you: sleep makes all the difference.

later, while walking smellie at the fields, birds were flitting and chirping about. a friend i passed on the trails told me she had just seen some wild turkeys. mushrooms are pushing up through the earth in all kinds of sizes, shapes and colors. a partly cloudy sky turned into a low bank of fog, sharpening distant conversations like talk across water. autumn colors are emerging in fiery oranges, glowing roses, glimmering yellows and reds. this time of year is pretty damn gorgeous. i wonder if calvin appreciates the seasons.

yesterday, we got our flu vaccines at a drive-thru clinic, then went for a short car ride. the back roads were mostly quiet. in the back seat, calvin wrestled me into giving him hugs and kisses. he smiled gleefully. for the most part, the kid has been all right lately. only a few manic outbursts of yet-unknown origin. i'll take it.

today, we caravanned up the coast with the same friends with whom we recently vacationed. they're my sister and brother, and have a boy a lot like calvin. we stopped to grab some pastries in wiscasset, then made our way up to a place called sewall orchard where we watched apples being pressed into cider. we ate a sausage-ricotta pizza in a boat launch parking lot. i walked calvin to the end of the floating dock, holding him tight as it was rocking. i wonder what he made of it. wonder if he knew he was walking across water.

click any image to enlarge

10.07.2021

dear reader

Eleven years ago today, when Calvin was just six, I wrote my first blog post. I didn't really know what a blog was, but despite my ignorance, Michael encouraged my endeavor to create one. He suggested I simply dive in. I did, and it was fun.

My initial hope in writing this blog was to increase awareness of epilepsy's prevalence and plight, and by doing so, increase funding to find a cure. For the first three-and-a-half years, I posted something every day. At some point in the process, my goal shifted into something more broad—a desire to inspire empathy for others, no matter their situation.

I hope every day I achieve that goal. I wish for others to somehow see themselves in my crafting of words about my peculiar, nonverbal, legally blind, seizure-racked, suffering child's struggles. My desire is for readers of my stories to feel less alone and hopeless in this hot mess of a world.

Unexpectedly, writing my blog has made me into a deeper thinker, a student of mindfulness, a healthier person, and perhaps even a better mother of my enigmatic child—and lawd knows, I could use some help in that department. What I didn't bargain on was the amount of love, kindness and generosity that has come my way from so many friends and strangers who read the blog.

So, I guess what I want to do is to thank you, dear reader, for believing in me, for sending on those messages of gratitude, encouragement and love, and for letting me know I'm not alone.

10.05.2021

in the withering

the lilies are withering, their supple edges starting to darken and curl. their delicate petals drop like tears. stamens cling doggedly to the center of each blossom's throat. like tulips, their demise is gorgeous, something so worth witnessing rather than dumping them into the compost upon first fade or wrinkle.

in the garden, the black-eyed susans are beginning to shrivel. the phlox are going to seed. the peony leaves are turning yellow, red and purple. inside, because of my unintentional neglect, the fire in the stove is having a hard time getting started. as on most days, my son is a constant and annoying distraction. it's hard to get anything done when he's home. no reading, no writing, few chores. he tromps around the house and yard in purposeless circles, like some crazed, caged animal; sometimes i wonder. i spent over an hour trying to get him to do his business on the toilet—sit. suppository. wait. get up. walk. repeat. i have to stand in the bathroom to avoid disaster from happening. i won't go into the shitty details. suffice to say it's better than years ago.

as i while away the hours beside my aimless child, everything piles up—the tending of the garden, the dishes, the vacuuming, the dirty laundry, the mounds of clean clothes. it's not that stuff doesn't get done. it's just slow. thankfully, my husband helps, plus does all the cooking.

yesterday, i was up at 3:30 a.m. caring for a shivering boy who has been on the verge of a seizure for days. his teeth were chattering madly from an alarmingly subnormal temperature, probably brought on by a haywire brain. i'm spent. and when he's like this, i wonder and dread if he's withering too.

when i'm inside this house alone with my son, which is often, i feel so disconnected. his presence is not always comforting. we don't converse (he's nonverbal.) he's often unreachable, seemingly looking right through me. he is mostly non-responsive to instructions. and yet, he expresses some of his needs. he searches me out, sits in my lap for five or ten seconds before getting up and motoring on. moments later, he does it all again. that's no exaggeration. it's disturbing. at times, he's so unsettled. tense. troubled. his behavior is often intolerable. i can't say how he feels. but this empty feeling he has carved out in me never fully fills or heals. i don't always hold it together. but i must forgive myself the unravelling. it's all a part of the process. survival and regrowth.

yesterday, i saw a young father at the grocery store. he was dipping his head into his tiny baby's carry-cradle. a stranger commented on the infant's cute face. i watched the baby gaze at his father and the stranger the way calvin never looked—or looks—at me. almost no one told me our boy was beautiful. at least that's my memory. maybe they would have if i had seemed more open and approachable. instead, i was beset by loss and grief because of his deficits. had become a shell of myself while feeling the weight of an alien world. that was a long time ago. back when i first began my withering. and yet, maybe the process of opening, coming apart, and emerging into something altogether different, if looked at in the right light, can be beautiful. like a fragile flower dropping its petals in a show of naked surrender.

10.02.2021

cocktails

When Michael is out of town, Matt leaves his wife and kids to come make me Manhattans and to keep me company. Lauren sometimes concocts pomegranate martinis while I sit at the bar in her kitchen. Dallas has been known to craft all sorts of delicious cocktails to imbibe at his place or mine. Kevin will mix me anything I want, but if memory serves, he makes a killer gin and tonic. Tim brews up the best and sneakily spirituous margarita I think I've ever downed; watch out! Luke loves to pour me a Maker's. Lucretia mixes elderberry with spirits. Jens and Barbara almost never show up without a bottle of bubbly in hand. Back before the damn pandemic, when I'd visit New York, I'd go to Petrarca, Ivano's family's amazing Italian restaurant in Tribeca, and he'd mix me up an Aperol spritz for curbside slurping. I used to belly up to the bar with a girlfriend or two and order beet yuzu martinis, rusty cowboys or Rita Hayworths, all garnet-colored drinks with a tart or spicy kick for any season, but especially good for sipping in winter. At home, my go-to is red wine, especially Gigondas and Côtes du Rhône. I enjoy a tiny glass, sometimes two, on most nights before switching to water. Once in a blue moon, I'll sip a shot of bourbon on the rocks, though not as often since my pal Woody died summer before last. During the holidays, Michael makes his family's bourbon eggnog; anyone who has knocked one back will tell you it's killer.

In short, and though I think of myself as a moderate drinker, I love a good cocktail. Perhaps since I don't drink them often, there's something special and festive about them that makes me giddy, even before I drink them! Sounds ridiculous, I know. But as Calvin's mother, I have to delight in the little things or I might wither and die on the proverbial vine.

But there are cocktails I loathe, and I don't mean the alcoholic kind. I'm talking about what neurologists and other physicians have coined drug cocktails. It's the piling-on of more than one drug at a time to treat a condition and/or treat the side effects of the drugs used to treat a condition, and to treat the side effects of those drugs, and so on. It's sickening, and I'm far from convinced it's necessary in many cases.

When Calvin was first diagnosed with epilepsy when he was two, the first few drugs he tried were as monotherapies, that is, one drug at a time. When each inevitably failed him, his neurologist would switch it out for a new one. It wasn't long, however, before the neurologist began practicing polytherapy on my little guinea pig. Calvin was barely three years old when he was prescribed three powerful drugs—Lamictal, Zonegran and Klonopin—in attempt to thwart his stubborn seizures. I questioned the addition of the third drug, a benzodiazepine, to be used as a bridge drug until the Lamictal, which must be slowly titrated to avoid serious, sometimes lethal rashes, reached a therapeutic level. I wondered why Zonegran wasn't a sufficient bridge drug since it was up and running at a therapeutic level (determined in clinical trials) from the beginning. The neurologist, who I'll call Dr. Rx, told me the Klonopin was meant to be used for only a few weeks. A few weeks turned into eighteen months, and in that time Calvin developed serious complications, including increased seizures, from the drug and its subsequent withdrawal. The use of the benzodiazepine—a class of drugs prescribed cavalierly for anxiety, insomnia and seizures, and meant only for short-term use (mere weeks because of their tendency for habituation and addiction)—felt like a cover-your-ass maneuver and a seizure-control-at-any-cost tactic. In any case, these drug combos, which are sometimes made up of as many as eight or nine antiepileptic drugs all at the same time, are commonly called cocktails. Sickening.

Thankfully, with some gumption, patience, research and gut instincts, I've been able to wean Calvin off of all but one pharmaceutical, Keppra. And with as many as five to eight grand mals most months, it's clear the Keppra isn't really working, which is why I've been slowly weaning it, too.

Suffice to say, the only cocktails we want in this house are the pretty ones made by loved ones from spirits which sometimes make me giddy.

9.27.2021

one night away

It was just one night away. Up the coast a bit. Out to an island linked to the mainland by a tiny bridge. Side by side, the house and cottage sprouted up from a granite shelf. Below us, the gaping mouth of the tidal river raged and swelled. It was as if we were on the banks of the ocean itself. The waves breaking on the rugged shore. The surf's rhythmic hushing, as if earth's lungs letting breaths out, could've rocked me to sleep standing up.

We were guests of beloveds who have a son a lot like ours. Before gathering, we each did a Covid rapid test; all of them came back negative. It was a year ago October when we had last vacationed together in adjacent lakeside cabins. Back then, because of the damn pandemic, we had worn masks and dined with wide-open doors and windows despite the frigid night. We sat on the porch and watched leaden clouds roll across the lake and release their burden upon us. We spotted jagged lightning bolts. Heard the sky split and crack and snarl above us. Listened to the rain pelt the cabin roofs. That night, Calvin seized.

Last Saturday, the weather felt reminiscent. A break in the rain let me escape to a nearby beach revealed by receding waters. I sunk my sneakers into piles of shells and pebbles, jumped and slipped like a kid from rock to kelp, luxuriating in my ten minutes of freedom. Smellie surveyed and sniffed her new surroundings. When it began to sprinkle, I bounded up the steep path and made it to the cottage just as the sky opened up surrendering its liquid treasure.

Soon after, Calvin got his evening meds. We laid him on the bottom bunk, shoved a couch against it and padded its wooden back with cushions so he wouldn't fall out and hurt himself. I was reminded of the indoor forts I made as a kid—for fun. It took him awhile to settle in the strange and darkened space. I wondered what he made of it.

Thankfully, the baby monitor's range was good enough to reach the main house, which meant the four of us could dine together. Michael went to check on our restless child twice. Laid him back down. Covered him back up. Finally, Calvin quieted. The table set, we devoured mouthfuls of roasted potatoes, fat lamb burgers and salad, raised and clinked our glasses of beer and red wine in tumblers. We celebrated anniversaries, mini vacations and simply being together. Just as we were contemplating dessert, I heard Calvin shriek and shudder. 

"It's the fucking seizure!" I said, as I flew from the table, darted out the back door and down the stone path to the cottage. It took a minute to reach my boy, having had to tug the couch away from the bed. When I did, his poor feet were kicking the paneling. As the spasms slackened, he had great trouble catching his breath. His soft tissue and or fluids fitfully blocked his airway. I did my best to keep him on his side so he wouldn't aspirate. His mouth had bled again. As always, it was upsetting.

It took the two of us. Michael and I clumsily lugged our toneless son to our big bed. We tucked a quilted bed pad under him. Shifted his body until he was centered with his head on the pillow. I crawled in next to him. With my hand on his heart, I fell asleep looking at a panorama including nearby silhouettes of four large evergreens. A shroud of mist had wrapped itself around their blackness. It was as if they were sentries watching over us. Soon after came the deluge. It lasted through the night, shifting in intensity. It was powerful, deafening, cleansing. Its magnitude dwarfed my son's fit and reminded me of nature's awesome indifference, its absence of judgement or discrimination. In that way it was comforting, helped me feel somehow grounded and hopeful, even amid the sorrow I felt for me and my kid.

9.22.2021

absences

As I walk the dog at the fields in late afternoon the sun descends, casting its long, early-autumn shadows. Bathed in the golden light, I get a mix of feelings both sublime and glum. I'm reminded of my splendid childhood summers, but also of times my mother rang the dinner bell calling me away from playing with my friends. I knew the fun part of my day had come to an end. It didn't matter that I'd wake up to another one. I didn't think of it. Just hung my head mourning the absence of my friends. Dragged my feet over the gravely road, heading home alone.

Leaving the fields, a boy jogs across my path. He must be twelve or thirteen. He's a little taller than Calvin and nearly as thin. That's where their commonalities stop. The boy is on his own. He is nimble. He can run. He's a fast athlete and, even at that age, serious and focused on his endeavor. Seeing him gives me pause, and I find myself thinking again about Calvin and our sorry situation with him—what if things hadn't gone so wrong?

I watch the boy run down the path and disappear around the bend. In the distance, a bunch of college students plays soccer, their fit bodies able to do exactly what their brains tell them to do. Their laughter is bittersweet to my ears. Hearing it makes my heart soar and sink, my eyes sting and blink, my mouth tighten into a smile then slacken into something more somber.

My precious boy doesn't have a single friend. He has no concept of play or sport, camaraderie or competition. He can't do those things. Doesn't have language. Navigates his world as if he were blind. Isn't very adept at walking. Has poor coordination. Virtually zero fine-motor skills. He's at the mercy of a brain anomaly, unforgiving seizures and drug side effects. I quietly lament: there's so little joy in life for him.

As I stroll home, the sun at my back and the afterimage of the running boy blazing in my brain, I feel lonesome. The wide street that runs in front of my house is desolate. There are no neighbors tending their gardens. No cars or skaters or bikers sailing by. No parents pushing strollers. No flocks of happy students crossing the road. Loneliness is not an emotion I feel often; I like my own company, like being alone. What I feel is the distinct absence of a child beside me. The loss is palpable. I sense the emptiness in it—the absence of conversation, of exchanging ideas, sharing hopes, hearing dreams, of feeling the sheer joy of walking, running, talking, biking alongside one's child. The hollow pit in my gut deepens as if weighted by a stone. The grief and loss constantly and for years gnawing at it. Thankfully, the burden has softened over time, not to the point of being in any way comfortable or easy, just slightly less dark, sharp and heavy. Less likely to literally bring me to my knees.

I've been rereading my blog posts from nine years ago. Back then, Calvin went seventy-eight days without any seizures. Regrettably, his behavior was unbearable—relentless and terrible side effects from taking high doses of three powerful anticonvulsant drugs. It wasn't a fair or sensible trade-off, so we began weaning the drugs one by one. It took us a number of painful years to get him from three down to one. Since then, however, nothing we've tried—five different kinds and repeated tries of CBD cannabis oil, Epidiolex, probiotics, increasing his Keppra, reducing his Keppra—has helped him regain any kind of seizure freedom longer than a few weeks. Lately, he goes mere days between seizures. I'm still fiddling with his dose of homemade THCA cannabis oil hoping to find a sweet spot.

I think about the boy athlete again, the young runner so sure, quick and lithe. I like to believe Calvin would be like him if things hadn't gone so wrong. And, so, I'm mourning the absence of a healthy, able child. But last night, when Calvin wasn't doing so well, I crawled into bed next to him. He reached for me, wrapped his skinny arms around my neck, curled his knees up to his little bird chest and pulled my head to his. With his eyes closed, he relished my kisses on his eyes, nose, cheeks and chin. Then, like he does sometimes, he made the sweet and soft hum I love so muchuh-uh. In my mind, it sounds a bit like Mama, which long ago he said just once. And for a fleeting moment, that empty sense of absence was filled right up.

Photo by Michael Kolster

9.17.2021

strange, rare, amazing gazes

strange gazes. bad appetite. sour breath. restlessness. intensity. wanting to drop. choking on food. hot skin. agitation. euphoric mood. these are harbingers of calvin's seizures.

too soon. only five days since he suffered the last fit. still, i saw it coming. i gave him extra cannabis oil hoping to prevent it. maybe i waited too long; it failed to do the trick.

i kissed my restless kid. laid him back down in his bed. a rare and sadly suspicious smile crept across his face. minutes later, we heard his telltale shriek. i thought we had dodged it. i was wrong. he seized and choked. something inside his mouth bled. afterward, he had trouble catching his breath. it's always unsettling. something we dread. never gets any better.

i quickly brushed my teeth and undressed. crawled into his bed. with my palm against his chest, his heart felt as if it would burst right through his ribs. it remained pumping wildly for quite some time. caused me to fret. made me think we should start him on a new med.

finally, my little calvin drifted off to sleep. dim light seeped in from the next room. i peered over his shoulder to a portrait of him propped against the wall above his dresser. it was made when he was five or six. often, when i lay in bed with calvin in the wake of his morning seizures, i see it in the shadows, its cool blues, pinks and reds. it was done from a photo. gifted to us by a painter friend. it's masterful. full of life and color, vivaciousness. in it, my boy's eyes are bright. his smile is big and broad. his gaze, unusually fixed. he's looking right at me. it's clear he sees me. these are rare and amazing gazes. on the days when i don't see my son smile—which is most, lately—at least i can always rest my eyes on it.

over the years, calvin has lost his sense of cool. of calm. of happiness. we see glimpses, like when we tickle or kiss him. but those moments are far between and fleeting. i wonder what the drugs and seizures did to him and are doing. wonder if he is in constant discomfort or pain. wonder how his hormones factor into the equation. wonder how we can recapture his happiness again.

9.15.2021

alone on the roads

Since Calvin returned to school early this month, I haven't been taking him on our daily, damn-pandemic drives on nearby back roads. I seriously mourn their absence; they were a great escape from these four walls, a kind of unwinding, and a chance to see the familiar smiling faces of a few strangers who have, in various ways, become friends. But a recent spate of spectacular weather inspired me to take a couple of rides by myself, one on my bike and another in the car.

I visited my usual haunts—Simpson's Point, Rossmore Road, Bunganuc, Wolfe's Neck Farm. The scenery didn't disappoint. It never does. And there were hardly any cars to distract me from my surroundings. I was quickly overcome by how liberating it felt to be alone on the roads and to be free of my seizurey, sometimes manic kid. I didn't have to glance at him every so often in the rearview mirror. I didn't have to hand him grapes, blueberries, cubes of cheese, roast beef and chicken sausage, some of them dropping to the floor and bouncing beneath the passenger seat, only to remain largely undetected and festering. I didn't have to reach back to grab the sippy cup from my berserk child whose juicy water streams down his chin soaking his shirt to the skin. I didn't have to suddenly pull to the curb during one of his seizures. I didn't have to lurch back and grab his glasses from his fist before he gnashed them between his teeth. I didn't have to jam a towel in the door to stop him from staring at the sun. I didn't have to hear him moan and shriek and watch him flail. Instead, I just traveled along at a leisurely speed, taking in the ever-changing landscape, which is breathtakingly beautiful in any season and in all types of weather.

In slow motion, I watched hawks and jays dip and soar. I gazed across splendid glens and meadows thick with goldenrod, wild aster, cat tails, Queen Anne's lace, meadow-rue and yarrow. I saw runners and bikers and skate-skiers mounting and descending hills. I saw folks mowing lawns and tending to their gardens. I saw fishermen and clam diggers working the shore. I saw bathers wading in both calm and choppy waters. And the skies. Oh, the glorious, cloud-strewn skies.

If Calvin can keep up his longish stint of attending school (he hasn't yet missed a day), I'll definitely be going back on the roads—very happily alone.
click on any image to enarge






9.12.2021

real boy

pinocchio. lovingly cut from an animated hunk of wood. carved and whittled limb to limb, nose to toe. squeaky knee and elbow joints and all. he feels no pain. knows how to speak. desperately wants to be real. i don't know his story well. still, he reminds me of the boy i never bore, the one who this minute is seated fidgeting and seizurey at my feet.

like pinocchio, the boy i never birthed can talk and run and leap. he can ponder right from wrong. he can read and swim, play hide and seek. he's free from daily pain and misery. he's a boy with goals and hopes and dreams. like pinocchio pines to become, the boy is real as real can be.

i remember the sonogram. the peppery image glowing from a screen. my unborn's' limbs moved as if they were hinged. like a little wooden marionette, but without strings. his legs kicked as if he'd hiccuped. then, like waterlogged sticks, sunk and settled on the riverbed of my womb. secretly, i wondered what might be wrong, his movements so awkward and lumbering. surreal. was he a bona fide boy after all? would he fulfill my coveted dreams of motherhood?

my son's mind didn't grow in sync with his form. he still walks wonky like a marionette—elbows up and crooked, knees nearly knocking, flat-footed, toes drifting inward. but though calvin in many ways is not a real child in the same sense as some of yours (he lacks the ability to do nearly everything independently) he loves and cries and wants and needs and aches and feels. he can't do what pinocchio the wooden puppet can, but i wonder if—and i wager—my boy yearns to be real.

9.04.2021

sublime

perusing through eight thousand pics. i fall upon an image. a still shot from a favorite film. in it, the celestial body for which the film is named, melancholia, hurtles toward the earth. its gravity, enormous. its shadow, broad and soft and inescapable. its weight, disabling, capsizing people and their relationships. 

years ago, i first saw the film. since then, calvin has suffered hundreds of seizures, including one this morning on day six. he has ingested thousands of pills. suffered painful and debilitating side effects. swallowed gobs of bitter cannabis oil, syringe by syringe.

i do a double take. see myself in this mother. her burden. her predicament. her place in the surrounding world—its dark sky and eerie light. the effort and worry etched into her face. no clear path forward. every step met with resistance. hard making progress, her gains erased. impossible slog through the mire that is her life. the weight of her child sinks her. his helplessness. her sheer effort just to keep him afloat. their back to a beautiful and familiar vista—a good and peaceful life left in their wake. and yet they manage to make headway, though really going nowhere.

even as the sun shines on her face, there is anguish in it. it's a bittersweet reflection of life with an exceptional child like mine—of yesterday and last night. of the past seventeen years. a lifetime. the image is dark and sorrowful, and yet somehow—in its raw, honest and gorgeous human depiction—soft, forgiving, intrepid, sublime.

Still image from the film, Melancholia

8.31.2021

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.

8.29.2021

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.

8.24.2021

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.

8.23.2021

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.

8.18.2021

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

8.17.2021

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.

8.09.2021

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.

8.05.2021

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

8.03.2021

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.

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.