looking back at recent posts, i realize i haven't been using capital letters much. somehow, lower-case-only promotes stream of consciousness, but it's also a way of conserving effort instead of expending it. lately, i feel the need to save all the energy i can just to deal with these seizures and this child of mine. 

calvin continues to be hammered by epilepsy. yesterday, he had another grand mal—his fifth in a week. he also had about a dozen focal seizures over four days—more than he's had the entire year. he had one or more seizures every day for a week. i can't recall that ever happening. i have no idea what's causing this bad spate, especially in the wake of nineteen days of virtual seizure freedom. could it be the new strain with which i made his cannabis oil? could it be the ketoconazole cream we've been using for the rash on his neck and chest (the oral version can cause seizures)? a growth spurt? a reaction to the flu shot he got five days before the string of seizures began? some underlying illness we can't detect? a change in his hormones or metabolism? the full moon? last week's car accident? some combo of the above to create a perfect storm? who knows?

yesterday's seizure occurred just after midday, a very rare time for him to have a fit. we were in the car on our way to pick up groceries. calvin let out a blood-curdling screech in the back seat. i took a quick left onto a side road, pulled to the curb, unlatched his seatbelt and laid him down so he wouldn't aspirate. pieces of apple and bile sputtered out of his mouth. when it was over, i tried driving home while he was still laying down, but couldn't latch the seatbelt, so i had to prop him up as best i could. he sat there, kind of sideways, his head drooping as if he were drunk.

at home, i was able to lift and carry my five-foot tall, eighty-five-plus-pounds-of-mostly-dead-weight child into the house and over to the green couch. no doubt i resembled the image i've used on this blog of charlotte gainsbourg's character carrying her son in the film, melancholia. i sat next to calvin as he laid on the couch poking his eye, rubbing his fingers together, and grinding his teeth. disconcertedly, he never went to sleep.

last night, i got up sometime after midnight and gave him a syringe full of cannabis oil, this one having been made with the same strain—chemdawg—that he had decent success with for years. a few years ago, when the cannabis dispensary changed hands, chemdawg became unavailable. now, we can never seem to get the same strain twice, and i imagine strains might make a difference in the treatment of epilepsy. what to do?

thankfully, calvin didn't have a seizure last night, but i'm not certain he is out of the woods. he's nowhere near baseline—having been sleepy and spacey most of the day. i have no idea what the hell is going on. there aren't many options left in my back pocket beyond riding this thing out and/or considering adding a second drug to his regimen, which i'm loathe to do. i'm fearful he's going to get hammered again, either by more seizure or the side effects of the drugs used to treat them. most of all, i dread him having a seizure that doesn't stop. please stay tuned.


again again

i wish it would rain again. patter on the roof. soothe my sorrows. quench and cleanse. inside, the light is warm and dim. my sister sent me a photo of an old flame. i can't quite place his face. don't know it's him. but then. but then. i note a smile that's only his. like so many, it's unfading. some things hardly change from their beginnings.

outside, winds arise and finger through the trees. pine needles shed like rain. the ground below turns solid copper. clouds begin to break as soon as they close in. again. again. leaves turn gold and crimson from one day to the next. autumn's alchemy. someday soon, a withering frost will hit. the moon is full again.

i crawl into bed with my son for the umpteenth time. he has just had a little fit ... again. his face is pale. i syringe a bit of cannabis between his lips. change his millionth diaper. in his short life, i've given him unknown numbers of pills and milliliters of medicine. still he seizes. again. again. in so many ways, he's still like an infant—drawing his knees up to his chest. wrapping his little arms around my neck. i think back to the week he was born. hooked up to leads and tubes inside a plexiglass box in the hospital. michael got no respite from work. instead, he was asked to do extra. thankfully, he declined the request. for seven weeks, calvin never left the hospital. my days and nights were spent there in the room with him. before and after work, michael provided us sustenance. so did some of our friends. it was all so uncertain and exhausting. and then. and then. seventeen years later, we're still dealing with calvin's diapers. still spoon-feeding him. still dreading the next seizure. each day the same. few changes. again. again.

the clock is off. it chimes four times at half past ten. it doesn't matter. its gong is comforting. smooth and round and soft like the box of wood that houses it. i think of the timepiece's beginning. a seed. a sprout. a sapling. a tree. a trunk. a log. a plank. a clock. i recognized my face in it when i entered the antique shop. i barely had a dime in my pocket. still, i knew i had to bring it home. it reminds me of getting through hardships. tick tock. tick tock.

as calvin rests, i see pictures of other people's kids standing straight and strong. they smile and wave and clown for the lens. i see photos of them running. playing sports with other children. watching movies with their kin. i'm fascinated. feel at once happiness and envy. i've learned to hold both emotions. it's necessary for understanding and survival. forgiveness. if only things had been different from the beginning. but then. but then.

the cast iron stove creaks with heat from a fire lit with paper and kindling. below the flames, a pile of embers glows and crumbles into chunks still reminiscent of their beginning. i hear my son up in his bed. he's rustling around in the covers. each time he moves his bed clicks. it triggers me. when i reach him, he's in the middle of another fit. those roving eyes and dusky lips. and i remember again when it all began. and how the fear and hurt and angst and stress keep happening. just like in the beginning. reliable, like the full moon and the rain and sun and wind. each week and month and year are the same. again. again.


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.


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.


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.


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


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.