wonder

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

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

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

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

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

breakthroughs on a somber day

again, my mood is somber, reflected in the sky's leaden heaviness. weighty as a handful of stones in my pocket. but like a cloudy sky, there are breakthrough moments of light. little bits of levity, like when i pick up a sleek and clean smellie from the groomer and she goes cutely berserk. or when my husband comes home early. or when i see the space open up as i chop down a sickly, old, monster rhododendron, and michael finishes it off with woody's chainsaw—so much possibility for something beautiful to take its place. something less beastly and oppressive. something i don't have to wrestle. something that doesn't burden me like my son's ongoing struggles.

lately, sorrow has been setting in as i'm reminded of how calvin, who is seventeen, should be a rising senior in high school—should be looking into colleges, reading interesting and complex novels, mowing lawns, hanging out with friends on the town mall or bowdoin quad, leaping off of piers and low bridges into brackish waters. instead, he's chewing on a crocheted rabbit rattle, having his hand held while walking down the sidewalk, tossing his sippy cup sideways like a toddler, playing with baby toys, being potty trained, wetting diapers.

several of my friends and acquaintances have kids his age. they're so grown up. independent in nearly every way. they've got futures as bright as breakthroughs of sunshine and blue sky in a bank of dark clouds—hopeful, sparkling, limitless. witnessing them is lovely, yet, like bittersweet lozenges, hard for me to swallow.

and as the pandemic has slackened a bit of its grip, i feel surprisingly unmoored. as the tethers are loosened, i'm not sure what to do. i find myself flailing. it's a strange mix of emotions. free and yet still imprisoned by my son and his condition. and while my husband made plans to visit italy this fall to print his next book (having photographed in paris and hawaii several times in recent years) i find myself wondering how i'll get through today, tomorrow, and the day after that. wonder where i'll be or have traveled, or what this normally-prolific self will have accomplished in two, five, ten years. nowhere? nothing? same old same old?

and i'm missing the handful of folks who unwittingly helped ground me during the pandemic. familiar strangers—the runner(s), bikers, strollers, dog walker(s)—smiling, nodding and waving to me from the roads. faces i look forward to seeing. lives i can only imagine and live vicariously through. haven't seen them lately. like a starless sky, without them i'm having trouble navigating through the pandemic's rough and receding seas. other than my husband and son, and the landscape itself, they've been my constants this past year, like little beacons or shards of light in a darkened sky. saw them much more than my own friends, though from afar. without their grounding, i feel as though i'm drifting from shore. and though i'm a pro at treading water, i feel slighly seasick. but perhaps, like stars on a cloudy night, they're not reliable. and why should they be? i'm nobody to these strangers. we all have our own lives and loved ones and struggles. and yet i remain eternally hopeful for communion, compassion, friendship, empathy, understanding.

today, however, on a favorite stretch of wooded road, i saw the black-clad couple (though this day wearing more earthen tones) who live on the point. i slowed and pulled over. rolled down my window and introduced myself. while trying hard not to choke up, i told them how i'd seen them frequently while driving the same roads nearly every day during the pandemic with my nonverbal, legally blind, autistic, epileptic, seventeen-year-old boy. they peaked in on calvin, who was in the back seat craning hard to find an absent sun. i told them how reassuring it was to see the familiar faces of strangers like them during months on end of long, lonely days spent solo with my son. they said they recognized my car. i'd seen them wave. the three of us visited for quite awhile, discussing neighbors and kids, drugs and doctors, the pandemic and back roads. i invited them to read my blog. it felt good to finally meet and connect with folks who have unwittingly been my mooring during a very difficult year. felt healing to offer them my gratitude in person. i wish i could have hugged them. they seemed quite affable and open.

finally, we said our so longs, and as i put the car in gear and headed to the point, i felt the sun's warmth and saw its rays start breaking through cracks in a vast bank of clouds reflected in a tranquil sea.

letting go

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

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

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

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

gathering again

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

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

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

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

all i want

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

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

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

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

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

Photo by Michael Kolster

impressions

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

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

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

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

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

the elixir is always forgiveness.

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

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

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

success

To laugh often and love much;

To win the respect of intelligent persons 

and the affection of children;

To earn the appreciation of honest critics

and endure the betrayal of false friends;

To appreciate beauty;

To find the best in others;

To give of one's self;

To leave the world a bit better,

whether by a healthy child,

a garden patch or a redeemed social condition;

To have played and laughed with enthusiasm

and sung with exultation;

To know even one life has breathed easier

because you have lived.

This is to have succeeded.

 

—Bessie Anderson Stanley 

weather, scene and mood

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

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

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

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

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

Simpson's Point

truth be told

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

Photo by Michael Kolster

the remains of the day

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

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

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

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

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

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

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

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