new year's eve

Calvin and I spent New Year's Eve in the ER. It was the first New Year's Eve in decades that I've stayed awake past midnight! Calvin and I both got some sleep, but were interrupted numerous times at ungodly hours for exams, IVs, blood draws, vital signs, a CT scan, an X-ray, and an unsuccessful attempt at getting a urine specimen. Through all of it, my ailing, tired and uncomfortable child was a superstar.

Earlier that day, we went to see the doctor because Calvin had been experiencing waves of excruciating pain—pain so bad it seemed as if he were being stabbed in the gut repeatedly. The doctor ordered a blood draw. Later that night, she called to tell us that his pancreatic marker, lipase, was three times what it should be. She advised us to go to the ER immediately for possible complications of acute pancreatitis. The blood draw at the ER, however, showed a normal lipase level, and the CT scan indicated that his pancreas looked fine. The ER doctor noted, however, that there were a handful of gallstones she said we should keep an eye on.

The CT scan also revealed a case of aspiration pneumonia in the lower part of Calvin's left lung, possibly caused by regurgitation stemming from his case of viral gastroenteritis. They sent us home the following morning with a prescription for a two-week course of antibiotics. Still, my gut tells me that his pain may be stemming from the gallstone(s).

Despite the exhausting array of tests and interruptions, the care at our local hospital ER was amazing. Those folks work their asses off, only to be abused by rude and unruly patients (one man was screaming at them in the hallway in the middle of the night. My guess is that it was about wearing a mask. I feared he might get violent.)

Right now, Calvin is safe and sound in his cozy bed in hid dad's arms with his favorite toys. Since coming home, I've been able to go for daily runs. On New Year's Day, despite feeling like hell, I was grateful I could run out at my beloved Pennellville on such a beautiful, misty and balmy morning. As I ran, I thought about the hell we regularly go through with Calvin—some Hades worse than others. But in later recounting New Year's Eve to Michael, who had finally left us in the ER around eleven o'clock that night at my urging, I realized how amazing the whole experience was. With tears in my eyes, I related to Michael how the CT-scan technician, Matt, had put the lead vest on me as if he were helping me with my jacket at a dinner party. His concern for me and Calvin was palpable in the grace and gentleness he exhibited.

I went on to ponder our fortune at being admitted to the ER by my dear friend, Michelle, who is a nurse and whose daughter, a classmate of Calvin's, is very much like him. She gave me tons of hugs and assured me we were in good hands. Also, upon arriving at the ER, we were greeted by a kind, elderly gentleman. I don't remember his name, but while we waited with our limp and listless boy slumped in his stroller, the man approached to visit with us. He wondered, based on having heard me say our address, if we might be affiliated with nearby Bowdoin College. We told him that Michael teaches photography there.

"My son used to teach there," he replied, then told us his son's name, which didn't sound familiar.

"He died eighteen years ago ... from cancer," the man said, and as I expressed my sorrow, tears welled up in his eyes.

He went on to mention his daughter-in-law, who also teaches at the college.

"Yes, we love her! She has donated many times to epilepsy research on Calvin's behalf!" I told him.

Just then, a bed in the ER became available, and so I gave the man a hug goodbye, while wishing we could sit and visit longer.

Later, in reviewing the events of New Year's Eve, I realized, despite its myriad stresses, what a rich experience that night had been. I recognized, that while I wasn't touring Manhattan or Rome or Los Angeles or Iceland, I was having a profoundly memorable experience, perhaps more meaningful than if I were at a party with friends or traveling the world. It became clear that the strangers I met that night really meant something to me intimately, even if our encounters were fleeting—and maybe Calvin and I meant something to them.

Slowly, Calvin is recovering. He's drinking fluids again and taking a bit of food—applesauce, banana, dry toast and, today, nonfat yogurt. His bouts of pain have mostly passed. We will take him to see a general surgeon tomorrow to discuss his gallstone(s) and whether he needs to have his gallbladder removed. I hope not.

In the meantime, as I spend most of these days nursing Calvin—changing his diarrhea diapers, taking his temperature, giving him meds, offering fluids and food, cradling him in my lap as he sleeps—I'll continue to ruminate on the manner in which we rung in the New Year, which, no doubt, I'm not likely to forget, except, perhaps, when I run.

stronger?

It has been awhile since I've felt as bad—cranky, depressed, hopeless—as I did on Friday. Maybe it was because I didn't run that morning. Perhaps it was the new moon and/or the storm that was approaching. Most likely, it was the fitful sleep I'd had adding to years of sleep deprivation, the stress of this damn prolonged pandemic, managing my child's chronic condition. Definitely, it was days of taking care of Calvin with no help since last Monday while Michael was/is hard at work. No doubt it was day after day of waking at five, giving meds, changing wet diapers and onsies and bed pads and comforters, my hyperactive and restless child so insistent on me, wiping up the various liquids he drools onto every surface, changing his clothes, putting on and taking off his socks and shoes, clipping his fingernails and toenails, cleaning his ears, brushing his teeth, washing his hair, hoisting him out of the tub, drying him off, leading him to his room, helping him up onto the changing table, giving him countless suppositories, sitting him on the toilet on and off sometimes for over an hour waiting for him to empty his bowels, wiping his butt, walking him around the house and yard, catching him if he starts to fall, watching him seize, getting poked in the eye by errant fists and fingers, being on duty twenty-four-seven, chopping up his food, feeding him all day long in fits and starts, burping him on my knee like a baby, listening to him grouse, repositioning him and covering him umpteen times a night. As I often think and as someone said to me yesterday, our situation with Calvin is impossible. I'm surprised I don't lose my shit more often. I owe that in part to my years of hardcore, painful swimming which nearly broke me at times, but never did. As one of my favorite funny memes says, I'm tired of shit not killing me and only making me stronger.

But when I break down and sob, often my husband is there to receive me and tell me how hard what I do is—the day in and day out of it with little to no help, especially these last years during the pandemic. And then, as I am wont to do, I turn to gratitude to soothe and console me, to help me look up. I ponder the multitude of fortunes I'm graced with, and then I put them down in words so I don't forget:

twilight. screen porch eating. strings of tiny orangey lights. crickets in the grass and bats flying circles in the backyard sky. crickets and birds playing in the background of a song playing loud on a kick-ass stereo. besties and other visitors, impromptu or otherwise. evening strolls through the organic garden out back, drinks in hand. celebrations. togetherness. loving and relating to other people's extraordinary, funny, smart, adorable children. laughter. clowning around. smoke from a waning fire wafting into the house. lovely people who love me without a doubt. cool-to-the-touch leather sofa on a hot, humid night. smellie, lying prone at the opening of the french doors. piano. vocals. guitar. violin. ear-to-ear smiles. feeling myself. being myself. hugs that are like mini massages. realness. dissolving anxiety. pizza in a box. calvin when he's happy, content and calm.

and:

frosty mornings. back road travels. long winding roads with ocean vistas. dense forests and winding trails. windows rolled down letting in the sweet aromas of fresh-cut hay, clover, wild aster. vast fields of corn. bales of hay dotting the hillsides like gnomes. panoramic landscapes of nearly any kind. canada geese. blue herons. goldfinches. catbirds. gnarly trees adorned with peaches and apples. meadows wild as i'd like to be, if only. echinacea. phlox. butterflies and dragonflies and hummingbird moths. the act of cutting the lawn.

and:

making and baking. ice cream cakes. lemon bars. chocolate chip cookies. caramel chocolate oat bars. carrot cake. people who love my gifted sweets. sharp-witted friends and neighbors who get me and with whom i can shoot the shit. beloveds who can cry on my shoulder. others whom i can tell anything for keeps.

and:

running easy. running medium. running with everything i've got for a spell. feeling young(er) and strong. acting like my kid self. dancing in the middle of the kitchen. signing out loud.

And then things feel better, at least for awhile. At least until the next morning at five when I wake to my Calvin and all the impossibilities that he has in store for me, which people not in situations like mine like to say makes me stronger but doesn't kill me.

2017 same old same old

slice of hard life, bits of fun

my kid falls and breaks his hip. he undergoes surgery to fix it. a four-inch incision and three steel screws jammed through his femur. some days later, he gets feverish and sick. he has three grand mals in two days. the same number in the entire month of april.

everyone is under the weather. snotty, runny, stuffy noses, though testing negative for covid. even the dog snores. unruly, drunken students traipse by on their way to and from parties between eleven p.m. and two-thirty in the morning. it's hard to get a decent night's sleep. i lie awake worrying about the serious and mundane. i think of my huggy child and how i should farm him out to nursing homes as a therapy kid. if only he didn't have innocent fingers good for poking out eyes and scratching necks.

luckily, an afternoon nap (a rarity) is like a pat of butter smeared on a hunk of freshly baked bread. it's a cloud. it's sugar dissolving into warm liquid. a salve and a salvation. the sounds of daytime waft through an open window: a young man shoveling gravel; songbirds; light traffic; lawn mowers. i deliciously drift in and out of the dream world, my husband and child saming me in the room next door.

i carry my ninety-two-pound child down the steep flight of stairs from the second floor where we've been camped out for five weeks which feels like a chunk of forever. he walks a few yards on the grass holding my hands as i step backwards, guiding him. i lift him into his stroller. buckle him in. push him around the garden taking our millionth loop. he paws an alberta spruce. takes his glasses off and begins chewing them. i can see he's done. he goes back up the stairs with a lot of help from me pushing his bum. he's happy to get back into bed again where he's free to do practically nothing.

he's supposed to go back to school on wednesday with walker and wheelchair and some vigilant humans. still, i'm nervous. he's not walking that well. his gait is slanted. his change of direction and pivot is hitched. i don't want him to get hurt again. it's a natural concern. but i need a rest. i miss my pennellville vistas, walks and runs. i miss my garden. i miss time and space spent alone. miss doing things for myself. miss my friends.

while i'm changing a wet diaper, i hear a barking dog. i look outside the open window to see if i can spot the snarling pooch. i see my neighbor walking his achy, ancient beagle who, by the way, isn't the culprit. half chuckling, i bark at him (my neighbor, not his dog) as he looks around in puzzlement. i bark and laugh again, and can see from my perch as he beings to understand, though still can't tell where i'm coming from. i call, "never a dull moment when you live next door to christy shake." he laughs and says something about crazy neighbors. i'm amazed and delighted, despite this slice of hard life, i still have a knack for humor, and that some people get my jokes.

glorious morning

it's a glorious morning when calvin wakes up on his seventh day without seizures, eats all of his breakfast, then gets on the bus heading to school. it's a glorious morning when a field sparkling with frost crunches underfoot, when trees have turned neon and the sky is blue. it's a glorious morning when it's thirty degrees and the sun is warming my face and shoulders. it's a glorious morning when i see people i like and love on the roads and fields and trails.

this morning, smellie and i went on a stroll with lauren and her dog, hola. we caught up on all things newsworthy and personal. we took a detour to an open space i rarely go. there, the marathon runner i used to see quite often on my pandemic car rides glided by and said hello. later, on the second part of an extra-long walk, i ran into a smiling tahnthawan, gave her a hug and talked with her about dogs, sparkly things, and trying something new. back at home, i marveled at the morning light splashing on the acidy, autumn foliage in my garden. any one of my few encounters were enough to make my day a good one.

after a late-morning bowl of steel-cut oatmeal with spoonfuls of honey and flaxseed meal, i drove along the back roads to michelle's house. she gave me a tour of her gardens, which are magnificent and ruggedly lovely, even as the perennials have gone to seed. then, we set out for a little jaunt, at first walking along the sleepy street that runs in front of her home. from there, we dipped into a quiet neighborhood and, at the dead end, ducked into the woods. the path, which was blanketed with fallen leaves, spilled onto a salt marsh offering a wide-open view of maquoit bay. we were surrounded by maine's astonishing beauty. warmed by the sun and standing on mats of soggy reeds and wooden planks stuck in the mud, we talked about caring for our disabled and chronically ill kids. as a hospital nurse, she shared some of her nightmarish emergency room covid stories, and we agreed that now is not the time to give up on measures meant to combat the pandemic, save lives, and suppress the emergence of more virulent strains, by getting vaccinated and wearing masks indoors. we also agreed that places like the one we were immersed in have saved us during the pandemic—that if we didn't have easy access to roam in and around wild, beautiful landscapes, our lives as caretakers during the pandemic would be much harder. i told her that the pandemic—most notably because of my daily drives along back roads with calvin when he wasn't in school—had made me more grateful for maine, its space, beauty, and its people. in essence, familiarity has endeared me to it.

i drove home with the windows rolled down. a sunny, sixty degrees feels balmy in a maine november. the breeze blowing through my hair felt exhilarating, like riding my bike as a girl. heading down the hill toward the bay, i could see forever—a rare thing in this place of few soaring vistas. i felt a sense of freedom i don't often feel anymore. i still had two hours to kill before calvin's return from school. i had time for a long, hot shower, and a chance to do some writing. having worked up an appetite, i dreamed about all the delicious leftovers we might eat for dinner—black beans and salmon, chicken curry, turkey-ricotta meatballs in puttanesca over homemade noodles—and the chocolate-malt-marshmallow-oreo ice cream cake i just made but have yet to taste. i was filled with gratitude. and i wondered, after such a glorious morning, if anything else (besides my amazing husband) might just jump right out and delight me. right then, calvin's bus pulled up to the curb, and my drooly, smiling turkey stepped off and almost hugged me.

green-eyed monster

he fell asleep easily, cuddled up in my lap on the green couch. although he is still tiny for his age, it's impossible not to notice how big he's getting. i wonder if he's outgrowing his thca cannabis oil dose. no doubt his hormones are raging. half an hour later, he woke suddenly, and by the distressed look on his face—a look that seemed to say, save me, mama!—i knew he was going to seize. i got out from under him so i could more easily keep him on his side to prevent him from aspirating. the grand mal was like all the others—ninety seconds of rigid, crippling convulsions, his fingers, ears and lips tinged grayish-blue from not breathing—except that this one occurred midday, like the last one that happened in the car. i hope daytime grand mals are not becoming his new normal. it's a troubling couple of events to say the least. still, i can be grateful he went ten days without any at all.

sitting here keeping vigil, i study his features: his noble nose, striking eyebrows, high cheek bones, full lips, smooth, thick hair. he's a handsome boy—strong, square shoulders, a broad back, narrow waist, good abs and pecs—and would have been more so had his brain filled out before he was born. but for whatever reason, it didn't, which accounts for the fact he is nonverbal, legally blind, uncoordinated, developmentally delayed, and racked with seizures.

of late, i've been feeling a bit more envious than usual; i guess that can happen when one pays attention to the rest of the world. i see photos of this year's seniors in high school; calvin should have been one of them. many are sons of my friends. they're good looking and fit. some of them are quite tall. all of them are athletic. i see them in photos on social media wearing their team jerseys, draping their arms around their friends' necks. i see snapshots of some of them running. i see other pictures of them hanging out with their families on trips to visit colleges, at sporting events, camping with their dads. and although i love seeing these pics, which are fascinating and never fail to swell my heart and bring a smile to my face, it's impossible not to feel cheated. parenthood's most precious moments, which are many, at every turn and milestone and in most every way, continue to escape us.

my son is sleeping on the couch now, his eyes half open at times, his brain likely still vibrating (did i tell you that one night after a seizure, i slept with my head against his and could feel his brain humming? most disturbing!) i've just now dripped some extra cannabis oil into his mouth, hoping to avoid another cluster of seizures like we had a couple of weeks ago. it's softly raining, which has a soothing effect on me, and a way of not making me feel like i'm missing out entirely. i glance outside and see a kid walking down the sidewalk with his mother and their dog. i feel a jealous pang. envy is a strange thing. they call it the green-eyed monster. and if you've ever gazed at me up close, you'd see i fit that description to a t.

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.

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.

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.

every path i take

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

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

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

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

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

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.

commencement

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

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

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

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

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

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

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

Photo by Andrea Tyree

embraces

just before three a.m. on sunday. embracing my son in the wake of his grand mal. his skin is warm and soft. his breathing is shallow. his limbs, lanky and long. in the dark, i reflect on our saturday, just before drifting off:

smelling sweet magnolia blossoms on my morning walk. making our first trip to the garden store since the pandemic's start. resisting calvin's desire to drop. proud of his half-successful efforts at keeping a mask on. taking a short backroads drive with a kid who is "off." exchanging smiles with the runner and the carhart man with his dogs. the sickly one is missing. i wonder if something is wrong. 

relishing strolls in the sunny backyard. paper-white, pink and purplish rhododendrons opening up. lamenting calvin's poor balance and grousing. delighting in a surprise visit from friends driving by. giving thanks for in-town living. the sun and warm breeze kissing my skin. calvin crosslegged in the grass trying to eat sticks.

sitting maskless in the garden with barbara and jens. little gabriel playing with barbecue tongs. sipping the chilled bubbly jens delivered last sunday. nibbling crispy sea salt and chocolate chip cookies just out of the oven. raising a glass to toast our covid vaccinations. barbara smiling in her pretty spring dress. her hair twisted up at the back of her head. the four of us chatting and laughing. feeding my boy blueberries one by one. blocking his efforts to stare at the sun. in-between bites, receiving his needy embraces. jens noting calvin's grieving and discontent. explaining to them that he's due for a fit.

gabriel cozying right up to michael. like petals, his dollface is slightly blushed. feeling his tiny hand in my palm. leading me to the compost pile. inspecting its rotting items with wonder and surprise. wishing i had such a child. grateful to call this cute, curious being my friend. missing his big brother nate. he's away for the weekend. such adorable people i can hardly stand it.

approaching five o'clock. time to say so long. deciding to hug barbara a week before my peak resistance (she got her first shot and recently tested negative.) amazed feeling her embrace. i linger in her arms not wanting to let go. my eyes begin to well and sting. after a bit, jens takes her place. we hug like some siblings. he kisses my head. i cry like a baby, as if we've never embraced. my yearlong hunger for this kind of connection finally, though not wholly, sated. basking in the healing power of dear friends' lovely embraces.

surreal

Last Saturday morning, after having well hydrated myself, I received Pfizer vaccination number two. Other than developing a sore arm with a small bruise, I've felt fabulous. No other side effects whatsoever. As with so many things, I feel grateful and fortunate.

On my late-Sunday walk with Smellie, I went to visit my friend, Lauren, who lives on a busy corner just down the street. She and I stood in the filtered sunlight inspecting her emerging perennial garden. Although sturdy blades of green are pushing up, nothing is in bloom. Still, its potential to be gorgeous as ever is apparent. She then wanted to show me a tiny shade flower called pulmanaria. I followed Lauren through her small cottage with its screened-in porch, then down some steps into her sunken backyard. Walking through the cottage to the shady enclosure felt surreal; it was the first time in over a year I had stepped foot into someone else's private space. I was taken by surprise, my senses vibrating in a way that made me feel light and alive, and very aware of what I have been missing.

An hour later, I was back home preparing Calvin's evening seizure medications while watching him rest on the rug in the next room. Michael was busy making some delicious chicken soup. As usual, we were listening to music at a decent volume. When I closed the refrigerator door I saw a tall, handsome, neatly-bearded man standing in our mudroom. It was our dear buddy, Jens, wielding a gift bottle of champagne—something that is becoming a habit for him. At that very moment, we were meant to be gathering with him, Barbara and their two kids at a safe distance in our driveway. We were supposed to be celebrating our recent vaccinations, but Calvin's morning seizure and sluggish recovery had caused us to postpone. Jens hand-delivered the champagne anyway.

From the kitchen threshold, Jens stood and chatted with us for a bit—maskless; it had been a few weeks since he had received his J & J vaccine. I told him that I'd hug him after I reached maximum immunity on May first, warning him that he might want to wear body armor for the event. It felt surreal to have a friend in our house for the first time in over a year. It was a welcome sign of things to come.

Just as Jens left, the afterglow of the day's two surreal moments—spending time maskless and close to friends instead of at a distance—left me feeling giddy and full of hope, even though I didn't get to embrace them.

Today, some of the small-leaf rhododendrons are beginning to show their pinkish-purple blossoms. Blush magnolia buds are opening and showering their sweet aroma on passersby like me. Daffodils are dotting gardens, roadsides and woodlands. After a long Maine winter that led into a spring which still looks too much like November, and after a fifteen-month pandemic isolation, the opening world is feeling surreal. I'll take it.

Should be looking like this soon.

renewal

spring dang sprung. got a vaccine coming on. happening in a week. calvin is on the docket, probably sometime in april. so ready for a shot in the arm. 

fifty-eight outside. left my jacket in the house. hard to believe thursday morning felt like six degrees. i swear the grass is turning green. crocuses are pushing up. one bunch is already open. no boots on my feet. just sneakers. feeling almost giddy. 

ready for tiny bonfires. for outdoor gatherings, celebrations and visits. byobs. though it still looks like november, i can see the buds on trees and shrubs plumping. hear the songbirds going crazy. want to pack the backyard with all of my peeps.

tonight—just now—i took a short walk by myself (no dog, no kid) to deliver a hunk of cake to some friends who live around the corner. it was the first time I'd been alone since i can't remember when. i felt like my old self. i'm reminded that spring is time for renewal.

windows

Deep in dream comes the whistle of a train. It's one of few sounds—plus wind chimes, foghorns and rain—that I don't mind waking to, even at four o'clock in the morning. The well-composed symphony of notes, the crescendo, the low rumble and roll of steel wheels on burnished tracks soothes me. I imagine myself in one of the cars headed somewhere—almost anywhere—peering out the windows at countryside, cityscape or coast. I drift back to sleep again until five or six when I must get up to give Calvin his seizure meds. In this house, sleeping in is not a thing.

Earlier, I saved another stink bug, at least I think so. She'd been lingering inside the upstairs bathroom for too long. Like me, she'd been traipsing in circles. I cupped her in my hand and opened the window, tossed her out hoping she'd fly away like the last one. But she was in no shape, and fell to the ground like a pebble. Perhaps she's tough and survived the fall. I'd like to think so.

Milder weather is coming in dribs and drabs. I walk Smellie past Woody's old house thinking that soon it might be the kind of evening we'd be sitting on his porch drinking whiskey together. Last spring we were visiting each other from opposite sides of a window. By june he was gone. I miss him so. 

Mark and Kathy peddle past on their tandem smiling and calling my name. Kathy blows me a kiss. I blow one back to her. Turning my head toward the glare of a sinking sun I see Jill a few houses down standing in her driveway waving both hands at me. I return the favor. At the crosswalk Nan slows, turns then stops. She rolls down her window. Behind my mask, I crouch down to see her better. She says she's eager to get working in her garden. Her perennials are likely the most beautiful in town. I tell her I miss seeing her. In maine's window between late spring and early fall, we often stand in her yard—one she's tended for probably sixty years—regarding the iris and lilies, zinnias, geraniums and dahlias. She seems to know all the botanical names of her many varieties. Every year she gives me a bunch of poppy seeds and a clump or two of something I covet for my own garden. I try to return the favor, but what I have to offer pales in comparison.

Calvin is on his thirteenth day with no grand mals. We rarely see focal seizures anymore, though they're not completely gone. He's changing, growing like crazy. He's doing better on the potty and beginning to wash his hands with a bit less help. His balance is better, his walking more sure. I've begun to peel myself away from him for brief moments in the house and yard. It didn't used to be that way. For seventeen years I've had to always be within arm's reach of him. The weaning gives me tiny windows of freedom. Still, I yearn for so much more.

anatomy of a pandemic

A year ago, I was home alone with Calvin for two-and-a-half weeks while my husband was in Paris taking photographs for a soon-to-be-published book of the city's parks. He was staying at his friends' apartment in the heart of the city while they were vacationing in Venice prior to joining him. Covid deaths in northern Italy were rising rapidly, though still in the hundreds if I remember correctly, and the fear of a global pandemic was becoming palpable. I imagined, with dread, Michael taking the Metro, crammed into cars with scores of other riders and lots of shared surfaces. I feared that his friends, Jonathan and Francoise, would return from Venice unwittingly carrying the virus with them, then pass it on to Michael who would bring it home to me and Calvin. I pleaded with him to get on a plane and come home early, but he was unable to find a flight. 

Michael's friends did not return to their Paris apartment until the day after Michael flew home. Though they never said as much, Michael guessed they purposefully avoided him so as not to risk putting our family, especially Calvin, in harm's way in case they were asymptomatic. Michael arrived home three days before the coronavirus was declared a pandemic. The last time we had any friends in our home was a Friday night exactly one year ago, March 13th. I stopped going grocery shopping and, as infection rates rose, I avoided the dentist and doctor. To put it simply, we have gone nowhere.

In recounting the events since then, it's hard for me to resist the urge to see it as a year of losses. Calvin has lost a year of attending school, seeing his teacher, aides and peers, and them seeing him. He's missed a year of going grocery shopping with me every day or two and lingering at his favorite spot: the meat case. He's lost a year of Saturdays and Sundays visiting our favorite bustling corner cafe. We lost a summer of lazy wanderings at agricultural fairs—one of the few enjoyable activities we can do with Calvin—taking in the sights, sounds and smells of farm animals, fresh hay, cotton candy and popcorn. Michael has lost nearly a year of communing in person with his college students. He has missed teaching them how to expose black and white film and how to make prints in a darkroom. He has missed the dynamism of in-person conversations with them about how to see and approach the world with greater clarity, curiosity, humility and gratitude. We missed our tradition of having both classes of students over for dinner at the end of the semester. He missed attending an artist residency in Wyoming. I've missed meeting and befriending his students, which I lament deeply. I've lost a year of relative freedom to roam where I want, belly up to the bar with friends, go on dates with my husband, see movies in theaters, walk on the beach, host dinner parties, or visit New York and the West Coast. I know I am not alone.

Despite these losses, I'm grateful for all we have, and I'm particularly cognizant of those fortunes at a time when so many Americans are needlessly suffering (it didn't have to get this bad.) My husband's job makes it possible for me to stay home with Calvin full-time. We eat well, enjoy our creature comforts, are surrounded and supported by an amazing network of friends, have health insurance, and are well. We don't have to worry about where our next mortgage payment is going to come from or if we'll be evicted. We don't fret about how we'll afford to heat the house, feed our family, pay our healthcare bills. We don't lie awake at night wondering if or when we might find work again. We don't angst about contracting the virus since Michael is able to work remotely and we have the space to stay safely distant from others.

And yet, I cannot shake the feeling that this pandemic year has been one of loss. I also wonder what Calvin makes of his year in isolation; he has seen virtually no one besides me, Michael and Smellie for months on end, and has spent the entire winter indoors. If the huge smile on his face which appeared when we finally ventured into a thawed-out garden is any indication, I wager he has felt loss and deprivation on some level, if only viscerally.

As much as the last year has felt like one of loss, however, it has also been one of gifts. Like no other time in my memory, this isolation has prompted the distillation of thoughts, scenes and people into their essences. In effect, the pandemic has moved me: to further regard and appreciate the quality of light in a certain room or month or scene or time of day; to contemplate light years and the sheer distance of a star; to marvel at a stink bug's travel in the days before her death; to consider and bask in the simple existence of four beings in one household; to notice the daily nuance in spectacular and mundane landscapes; to see better the smile in people's eyes; to study and note the incremental changes in a self, a husband, a child; to see the maskless faces of strangers become familiar, even beloved; to feel the subtle play between anguish and hope; to understand and witness the many worlds reflected in pools and eyes as mirrors and windows.

I've also come to understand what I am physically and emotionally capable of doing: being my developmentally disabled, nonverbal, legally blind, incontinent, autistic, seizure-racked son's sole daytime companion and keeper for an entire year during a pandemic. Though laden with more than its share of angst, sorrow and frustration, and as strange as it might sound even to myself, I consider this prolonged and uninterrupted time with him a gift.

Bois de Boulogne, by Michael Kolster