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 sand bar. 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 people who love me. in these, and dreams of flying over land or breathing underwater, i simply will things into being. 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. inevitably, calvin 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.