eighteen

Eighteen years ago today—six weeks before his due date, two weeks after a sonogram revealed an alarming absence of white matter in his brain, and a week before a scheduled cesarean at Boston's Children's Hospital—tiny Calvin came into the world during an emergency cesarean at Portland's Maine Medical Center—in the middle of an ice storm. I guess that's how he rolls.

Seven weeks passed before we brought Calvin home from the hospital. At the time, Michael's employer did not offer parental leave (oh, how we could still use some) and, while Calvin was in the neonatal intensive care unit fighting to thrive, the college asked Michael to take on an ill colleague's course of classes in addition to his own. Thankfully, for our sake, he said no.

Every evening after work, Michael made the thirty-mile drive to Portland to be with me and Calvin in the hospital before spending the night with me in the nearby Ronald McDonald House where parents of sick children were provided meals, a comfortable place to sleep and, for some, a private place to grieve.

Halfway through those heart-wrenching and difficult first seven weeks, when Calvin became just strong enough to be transported via ambulance, he and I took up residence in our local hospital's labor and delivery ward. Every night for three-and-a-half weeks, Michael brought me a home-cooked meal, which we ate together at a little round table in the corner of the room while Calvin slept. Our friends, Ta and Jerry, and Michelle brought us meals, too.

I hear parents remark, often lamentably, about how quickly their children grow up. I get the sentiment; I feel the fleeting passage of years in my life, too. In some ways, yes, Calvin "grew up" in a blink. But his nearly-imperceptible and in most ways halted progress has had a way of slowing time to a crawl; I mean, I'm still changing diapers after eighteen years; that kind of thing can have the affect of stunting time. But the protracted passage of time has led me to be mindful of every moment of the past eighteen years, and to have felt them deeply—beginning with the tragic sonogram, the fear, the feelings of grief and loss, the hopelessness and uncertainty, the joy and surprise, the frustration and resentment of raising a child like him. I've done and been through some difficult things in life, but nothing compares with this marathon. At the same time, I've felt the most extraordinary love for my nonverbal, legally blind, autistic, enigmatic, impossible child who has virtually been joined at the hip with a me for eighteen years. Suffice to say, it's been a wild ride; I'm exhausted and proud.

Instead of celebrating Calvin's transition into manhood, I began his eighteenth birthday by cradling him in my arms like a baby again, my eyes stinging and welling up after four days of seizure-related worries, woes and sleep deprivation. The world looks blurry through watery eyes and wet lashes, and I think about how much easier it would be to raise him if it weren't for relentless seizures and drug side effects. Still, there are moments of joy with my heartbreak kid, who can both exasperate me and melt me into a mushy mess of motherly love. I guess, in that sense, we're no different than anyone else.

Happy birthday, Calvin. You're the best! We love you so much.

Photo by Michael Kolster

secular blessings—there are so many

the free feeling of traipsing down the middle of a deserted road. the sound of snow and ice crunching underfoot. standing in the the center of that field alone. the shine off its glossy surface. thinking of the pennellville meadow sheathed in ice, its grassy tufts like waves in a frozen ocean. the hollow knock of a woodpecker disturbing the quiet. the sting of frigid air in my nose. friends calling and knowing they can cry on my shoulder. long good talks with sisters and brothers. post-booster, post-fever, post-seizure child spending most of the day napping in my lap, keeping me warm. seeing in-laws in their silly glasses on zoom. making a killer coffee oreo cookie irish cream chocolate fudge brownie ice cream cake for after christmas dinner. getting lost in the rolling flames of a fire in the wood stove. the sweet richness of bourbon eggnog topped with sugar-laced whipped egg whites and nutmeg sprinkles. friends and neighbors dropping by with goodies galore. smiles, gifts, visits and messages from once-strangers. so many beloveds. dream of our dear Arnd alive and well and among us. hearing from his parents the next morning. woody's kin dropping off a holiday care package in his absence. writing at the butcher block table as my husband busies himself in the kitchen. rosemary rack of lamb about to go in the oven. the roundness of a french horn with the charm of a harp. looking forward to watching the 1951 version of dickens' a christmas carol. all dressed up, no place to go.

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.

blasts from the past in the not-too-distant future (fully vaxed!)

real celebrations. byobs. potlucks. barbecues. standing elbow to elbow. face to face. cheek to cheek. long and frequent embraces. diminishing situational diameters. gatherings longer than an hour and with more than four people. seeing maskless faces. indoor time with my peeps. eating in the screen porch. visiting with neighbors on the same side of the street. making new friends. getting help to take care of calvin. visions of sending him back to school. working in the garden without having to mind calvin. a house full of people. a house to myself. visiting friends' homes. sharing the sidewalk. sitting in close circles around the fire pit, dining table or wood stove. roaming the fields. biking or running the roads. maybe one day going to movies and restaurants. maybe bellying up to the bar with my chickies. sound sleep. deep dreams. carefree thoughts. easy breathing.

From eleven years ago, but you get the idea. photo by Timothy Diehl

in the wake of ice storms

Last Friday's ice storm on my only child's sixteenth birthday reminded me of the day he was born. My water had broken at one o'clock in the morning. The doors to our mudroom and car were incased in ice. Michael punched them open, and we made our way along desolate streets to the emergency room of our local hospital. Shortly thereafter, we were transferred by ambulance to Maine Medical Center in Portland. After a lengthy pheresis during which my platelets were extracted to give to Calvin for his suspected brain bleeds, and during an emergency cesarean under general anesthesia, Calvin was born. Neither Michael nor I witnessed his birth because, since I was unconscious, Michael was not allowed in the operating room.

Upon his delivery, Calvin did not need the platelets, nor did he need brain surgery to install a shunt; spinal fluid was not backing up in his brain, so his enlarged lateral ventricles were stable. But he was six weeks premature and weighed less than five pounds. He was flaccid and had awful Apgar scores, had difficulty breathing and regulating his temperature, had dangerously rapid heart rate and respiration, and no suck-swallow reflex. He spent seven weeks in the hospital—half of which he boarded with me in a labor and delivery ward—before we were able to bring him home.

Every year for at least the last decade Calvin has gotten a hand-delivered, handmade birthday card from my friends' son, Felix, who was born in the room next to ours a few days before we were discharged from the hospital. Felix's card, and past ones from his sister, Zoe, who is away at college, tell me that Calvin is thought of and remembered, even when life itself seems to have neglected, sidelined and harmed him in so many ways. The gesture usually moves me to tears.

This morning, Calvin suffered one of thousands of seizures he's had since he was two years old. When he has a grand mal, I sleep next to him for at least an hour just to make sure he keeps breathing. People can die in the wake of seizures, and so I remain vigilant as possible for my son. As I rested my hand on his waist, I felt keenly aware of every moment from the past sixteen years—the pain, the sorrow, the grief, loss, despair, fear, doubt, struggle, sleep deprivation, fatigue. So, too, I felt the moments—however fleeting—of triumph, joy, hope, love, tenderness, understanding and even levity. Then I drifted off to sleep.

In the days after an ice storm, streets can be treacherously slick. Craggy slush impedes sidewalk progress. These icy-white tempests can lay waste the landscape, breaking branches and taking down power lines. But in their wake they reveal crystals which glow and glimmer like halos when the sun filters through the treetops. And sometimes, despite bad odds and weather, precious babies like Calvin make their way into the world and amaze us.

north star

Last night, while much of the world lit candles on their menorahs, celebrated the birth of the baby Jesus and prepared for the coming of Kwanzaa, I watched my son seize. He had fallen asleep about an hour prior, and just as Michael and I were readying for bed, I heard Calvin screech. When I got to him, he was reclined with all fours in the air, crooked, stiff, and trembling. There on his back, he couldn't breath. Quickly as I could, I unlatched his bed's safety netting and panel then, reaching in, yanked his right arm to turn him onto his side. Soon, oxygen began passing his lips again, which had turned a ghostly shade of grey-blue, his airway having been blocked by flesh or fluid.

Holding him close to me as he drifted back to sleep, I thought about the tens—perhaps hundreds—of thousands of others whose sons and daughters were also seizing, disrupting special gatherings and gift-giving, candle-lighting and festivities. I thought about refugees who had traveled miles, many to be separated from their parents, to be kept in cold cages, slumped on hard floors without their medications. I lamented the cruel way they've been forsaken.

Earlier, Michael and I had been moved to tears upon reading a message that one of Calvin's nurses, Rita, wrote to us in response to my recent post, hard conversations. Within her loving sentiments, she included this prescient quote:

"I want to know if you can get up, after the night of grief and despair, weary and bruised to the bone, and do what needs to be done to feed the children." —Oriah Mountain Dreamer

She went on to say:

I have the rare privilege of witnessing you and Michael do that day after exhausting day for years and years and years, perhaps for the rest of your lives.

You chose to share your beautiful, so severely limited son, a child who teaches us great lessons in compassion and loving more. In this gifting season, you all are one of the most profound gifts of my life.

Last night as I tucked him into bed, for the third or fourth time, he curled and cuddled into the covers, in his sweet peaceful way. As I kissed him goodnight, again, he gifted me with his sweet smile. He blesses me with his love. I am so grateful for Calvin.

I'm no believer in the folklore which teaches that Jesus is our savior and lord. But, because I have a child who inspires love, acceptance, compassion and empathy, I thought about Jesus, wishing others were so. And in pondering the stories of Christmas—the wise men, the refugees, the innkeepers—I realized Calvin is most like the North Star, bright and constant, shining on everyone no matter who they are.

Photographer unknown

party girls

Over the weekend I made a last-minute trip to celebrate my friend Heather's fiftieth birthday in the Big Apple. It was an action-packed forty-eight hours, which included strolling elbow-to-elbow with thousands of others through the misty city, getting caught in a rainstorm, eating ridiculously delicious food including a street-vendor hot dog (amazing), devouring the eye candy at Saks Fifth Avenue, taking in a Broadway play, seeing the Rockettes at the Radio City Music Hall and hanging out with four badass party girls in Midtown.

The perfect ending to the weekend was seeing Calvin's huge smile last night when I got home. His response was heartwarming and made me think he knew I'd been gone. Sadly, over the weekend, his sixteen-day seizure-free stint was broken by a grand mal on Saturday morning while I was gone. Still, I'm hopeful he'll have another long stretch. So, too, am I hopeful to get back to Manhattan—the city that never sleeps—before too long. I just wish I could bring Calvin along.

Birthday Girl in blond.

our excellent adventure

Stepping to the crest of a small dune we finally spied the Atlantic spreading out before us in a bed of waves. Despite a ten-minute visit, it quenched my thirst for the sight, sound and smell of open ocean and the ability to see for miles. We hobbled to the shore with our belligerent child, wrestling with him every step of the way. When we reached the surf, it lapped his feet and shins. He leaned forward to touch it. Surrendering, I gently let him drop, the salty water washing over his legs. Clearly thrilled, he squealed and splashed and flailed, then took up a fist of sand and got it partway to his mouth before I interfered. His diaper filled with seawater until it nearly burst open. Once there, mingling with the ocean—the water his second home like it is for me—he didn't want to leave, so our trek back to the car was nearly as tough as the one out to the sea.

Our trip last week to Florida was a successful one on so many levels. It was the first time we'd taken Calvin on a plane since 2011. It was the first time we'd taken a vacation packing his cannabis oils; thankfully, TSA had changed their rules on medical marijuana about a week or two before our departure. Our flights were on time. Not unlike Houdini, I managed to change Calvin's wet diapers in the tiny airplane bathrooms.

During our excursion, Calvin remained seizure free. Two loving caregivers, Jessica and Cassandria, stayed with Calvin and put him to bed so that Michael and I could attend two dinners "out." The women's attentiveness, professionalism and affection left me wishing they'd move to Maine.

We made it to the beach and lounged beside the pool in the shade of palm trees. We were graced with gorgeous, sunny weather with barely a hint of humidity.

For the first time, I was able to meet my friend, writer and professor of English at the University of North Florida, Chris Gabbard, face to face. He gave me a copy of his celebrated new memoir, A Life Beyond Reason, written about his beloved son August, who I believe was much like Calvin.

On one night, I had the absolute pleasure of partying with a table full of interesting, energetic, curious, compassionate and humorous septua-, octo- and nonagenarians at my mother-in-law's eightieth birthday dinner. Calvin got to see his grandparents, grandaunt and all of his aunts, uncles and cousins on Michael's side. I was happy to have conversations, albeit short ones, with all of my in-laws, especially my niece and nephews, whom I love and am so proud of and miss when we are away. And Madison, our niece, doted on Calvin and played with him in the pool.

Calvin with his buddy, Madison

in my element

I felt nearly like my old self last night—giddy, relaxed, excited, even a little rowdy—getting gussied up in some fancy duds I mined from Salvation Army. What you can't see in the photo below is that I am wearing tails over of the strapless, shirred-tulle dress. Comfy in my black patent flats, a bit of bourbon warmed me in the wake of an excruciatingly long, icy, frigid winter "vacation" week, which confined us to home with an oft-agitated kid. At six o'clock, I kissed Michael goodbye and headed south in the rain, carpooling with Freddy Mercury (my friend Vin) and two others from Queen (my buddies Aaron and Dan), to attend our friend Swifty's (my pal Tim) annual Oscar gala.

Thirty miles away, we were greeted by a venue filled with tulips. A throng of handsome men sporting tuxedos and dinner jackets, some dressed in drag, plus a smattering of women, drank Prosecco and hammed for the camera. In a rare, live performance, my buddies from Queen rocked their hit, We are the Champions, to the surprise of many happy onlookers. On three walls, a half dozen big-screen televisions broadcast the Red Carpet. Swifty, our most beloved and dapper host who always goes all-out, if not over the top, for his guests, was at his best emceeing the event. As the awards show began, we dined on delectable spinach salad, stuffed pork tenderloin, flaky haddock smothered in a divine white sauce, roasted root vegetables and penne. I might—just might—have gotten a little bit tipsy.

The night reminded me of parties I threw decades ago (has it really been that long?) in my sweet Haight-Ashbury flat, where scores of friends and strangers dressed in their finest threads rocked the house, eating good food, drinking probably too much, laughing and dancing. I'm in my best element at a good party, even more so when I can dance.

By the time we left the event, the crowd had dwindled to some hard-core enthusiasts, and the rain had stopped. On the way home, Queen sang Cameo's, Word Up, from 1986 as I listened awestruck in the backseat remembering what it felt like to be young(er) and unencumbered. I wished they'd sung hits the whole trip north.

It was just about eleven when I finally rolled into bed. In the attached room, Calvin slept soundly under his fleece and down comforters. Nellie and Michael were deep in dream state. Closing my tired eyes, I wished Calvin would make it through the night without any seizures, hoping he would manage to go back to school, because—shindig or not—this party girl needs some rest.

on jesus, walls, alms and calvin

At four-twenty this morning, only three days after his last one, Calvin suffered a grand mal seizure. It was a typical one for him, self-limiting with full-body convulsions lasting ninety seconds. After it was over I wiped the blood trickling out of the corner of his mouth from having bitten his cheek or tongue. Watching my son seize is never easy, and would no doubt be terrifying, perhaps even repulsive, for most onlookers to witness, or for any parent to see their own child suddenly suffer. I think about other children who have their seizures at school. I wonder if they're made fun of behind their backs by other kids. I wonder if they are stigmatized and shunned. I wonder if they are thought of as alien in some ways. I wonder if they're walled-off from other kids; no doubt their epilepsy and its impact grossly misunderstood and feared.

On seizure days if Calvin rests, I often read the news and pop in and out of social media. The headlines lately seem to be all about the government shutdown over funding for a border wall. Apparently, Trump supporters are crowd-sourcing its funding, having raised in recent days seventeen-million dollars for the project. The notion sickens me, especially in this season of charity celebrating the birth of Jesus. I'm disheartened by the fearmongering and demonization of good and innocent people desperate in their attempts to find and make a better life here. If not descendants of slaves or indigenous peoples, we Americans came from immigrants. We mustn't be fooled by politicians eager to divide us for personal or political gain. Humans are the same the world over; if not for the accident of birth, we might be fleeing wrecked homelands, too. What claim have we to this land anyway?

In the days between Calvin's seizures, I came across two short pieces most worthy of reading this holiday season, one by a Muslim who attended Catholic high school in California, and another by the author of the outstanding book, The New Jim Crow: Mass Incarceration in the Age of Colorblindness. The first work expresses its author's love and reverence for Jesus. The second explores citizenship and immigration. The two pieces, which make for a lovely pairing, offer compelling arguments for welcoming immigrants and refugees.

Though raised in a Catholic family, I'm not Christian. Nonetheless, I embrace what the Bible says Jesus preached: unconditional love, compassion, acceptance, charity for the needy, the poor, the afflicted. It upsets me to see and hear so-called Christians maligning other decent human beings. It's hard to see folks hell-bent on erecting a wall to divide us from those who need and bleed the same as we. Like us, migrants are laborers. Like us, they love their children. They want to live a good life, free from poverty, exploitation, oppression, violence. And, yes, they pay billions in taxes. Like immigrants are to some Americans, my boy Calvin is misunderstood and derided by the ignorant for his alleged burden on society. But like Jesus, Calvin embodies the best of humanity, teaching us unconditional love, kindness, charity, acceptance, humility. I ponder the infirm in search of treatment, imagine the migrant seeking refuge. I ask myself and others, what would Jesus do? I doubt he'd champion a fund to build a wall between his people.

In this season of getting and giving, I'm keenly aware of and most grateful for the accident of birth in a nation of plenty to parents who were not poor, disenfranchised or oppressed. I'm thankful for our health, our home, our community, for my husband's gainful employment, for generosity, safety, love, brotherhood and sisterhood. Despite Calvin's suffering and burden, I'm grateful for his purity and affection, and for what his being stirs in me to be and do—to give alms to the poor, the hungry, the homeless, and to welcome those who need safe haven, building bridges, not walls, between the world's good people.

too good to be true

"Godammit!" I cried, whipping the covers off and scrambling to our seizing child. It was the first of two grand mals Calvin suffered on either side of midnight last night.

I had been expecting a seizure for a couple of days, having seen many harbingers on Sunday, and more on Monday—my child's warm skin, his hyperactivity, mania, rashy butt, insane fingering, agitation, eye poking, jaw jutting, bumpy face. But yesterday after school Calvin was a dream. He walked well and waited patiently at the grocery store, ate a good dinner, sat happily in my lap giggling as I tickled him, played with his toys for a bit, went to sleep fairly easily with a huge smile on his face.

Calvin's good behavior was an inadvertent gift for Michael's birthday, a day my husband has never liked much. He prefers, in most ways, for his birthday to be a day like any other—no pomp, no fuss, no gifts, no attention. Instead, he made one of his favorite meals—stovetop spareribs braised in onions, white wine and serrano pepper aside creamy mashed potatoes and impossibly thin asparagus. After we ate, I brought out the mint chocolate Oreo ice cream cake I had made while Calvin was at school. Although we are both tired and overextended, it was turning out to be one of his better birthdays.

Regrettably, however, epilepsy has a way of ruining things—sleep, meals, celebrations, plans, hopes, dreams. Considering Calvin's good nature yesterday, the first seizure was somewhat of a shock; the second one, though half-expected because of the earliness of the first, a complete letdown. I told Michael that I had had a fleeting thought earlier that Calvin's good day might be too good to be true. I was right.

The three of us have been mostly awake since 1:30 this morning dealing with a wired child who doesn't appear to be out of the woods. After the second seizure, and for reasons I can never be sure of, Calvin spent several restless hours alternating between lying down and hugging me and sitting up with a rapid and pounding heart, clammy hands, trembling feet, and arms so crooked and fingers working so madly against each other you'd think he could spark a flame. Now he is in the jumper stomping, eye poking, fingering, clenching his teeth, and covering his ears, foamy drool bubbling down his chin.

Days like these nearly break me into little pieces. But there are things that save me from completely falling apart—writing, trying to focus on the knowledge that this too will end, gazing outside at the trees and shrubs turning orange, rose and yellow in the autumn sun, and listening to music hoping my son isn't winding up into another one. And gratitude. Gratitude for other things nearly too good to be true—a warm house, a fine, handsome, creative, talented, thoughtful, smart, prolific and loving husband, wine on the table, food in our bellies, electricity, hot water, indoor plumbing, art on the walls, dry basements, light-filled spaces, cozy fires, dear friends and family, enough clothes, enough money, decent health care and schools, reliable cars, leftover ribs, and mint chocolate Oreo ice cream cake in the freezer.

joy ride

Red-eye flights are aptly named; mine came in this morning at just after seven. I returned from a short trip to Seattle, having stayed up past midnight one-too-many days. It was good to get away, though I had too little time to see everyone I wanted to see, and re-entering the atmosphere that is all-things-Calvin has proved a bit trying, particularly when it is his third day in a row of seizures, humid, and ninety degrees.

My trip was relaxing and invigorating. I spent some time driving around my old suburban digs—the pool where I spent all of my summers, the brand new high school, the house I lived in from the age of two until twenty, which now seems a dwarfed and somewhat dilapidated version of the one I remember, the pond where I used to catch frogs. The place had changed and yet, in ways, had remained remarkably the same.

I dined with dear friends whom I've known most of my life and who have kept in touch with me, noshed on homemade Indian food and pizza. I rented a car and cruised south to my nephew's wedding, met his new bride, sat and shot the shit with my brother Steve whose wit and humor I so appreciate. On Sunday I sipped a sidewalk bourbon at the Pike Place Market, ate roasted octopus and gigante beans in Adirondak chairs on the shores of Lake Union, strolled past sleepy Capital Hill mansions and—one of my trip highlights—rode the ferris wheel on the wharf drinking chilled white wine from a sippy cup. My other nephew and I scored some tasty shawermas on Broadway, satisfying a craving I've had since having left San Francisco seventeen years ago.

And though all that is a distant memory already, I'll still have etched in my mind forever the faces of people I love deeply, and the joy ride I took on a cool summer day in June, Seattle style.


from Christy Shake on Vimeo.

life sucks, except when it doesn't

At just past one p.m. it's sunny and thirty-five degrees. No school and no nurse means a long day with Calvin, who has been ramping up to a seizure for several days, albeit in the midst of his best month-long stretch in the past year and a half.

Despite the gusty conditions, I decide we should venture downtown, so I bundle up the two of us and set out. Our first stop is Morning Glory health food, a small store wonderfully crammed with items leaving little room to move. Today, it's packed with shoppers perusing the aisles and waiting in line to purchase their goods. All I need is yogurt, but Calvin keeps trying to drop to the floor making it difficult to wait in line to pay. With my knee in his back to keep him upright, I notice our friend Daphne who, upon seeing me struggling with my stubborn boy, offers to let me cut in line. The two women behind her don't seem too happy at the notion, so Daphne buys the yogurt for me. I tell her that intend to pay her back doubly.

The main reason we've come downtown is so that Calvin can get in some walking beyond the small and repetitive loops he does inside the house. So although he's acting a bit obstinate, I choose to try him on the sidewalk. Flipping up his hood, I grasp his hand and begin walking into the frigid wind. Every few yards I wipe drool off of his rashy chin with the extra kerchief I grabbed before we left. At the end of the block we greet the same young homeless man we'd seen a few weeks back when the weather was springlike, and to whom I'd given a fistful of change I'd saved up in my purse for that very moment. The man looks to be no more than thirty. He is bundled in layers to ward off the cold, though still looks as if he might be shivering. I hope his beard helps to keep him warm. I tell him that this time I'm tapped out, but that it is nice to see him again. Then we bid him so long and continue on our way south.

Calvin walks four blocks to Local Market—further than he's ever walked with me downtown, and without balking once. We sit for five minutes to nibble on some wild rice, cranberry and edamame salad, and share a milk chocolate salted caramel. On our way back up the street we greet the homeless man again.

"I don't have cash but I do have a credit card," I tell him, "Can I buy you a sandwich at the Big Top?" referring to our favorite deli. "Come with us."

He agrees, folds up his cardboard sign and sets his plastic jug of water on top. When I ask, he tells me his name is James. I introduce myself and Calvin, explaining that James is Calvin's middle name, in part because we like it and it sounds good, in part because it's his dad's middle name, but mostly in honor of four James we know and love: Michael's dad, Michael's best friend in high school who died from leukemia, Michael's colleague, Muller, and our dear friend Garzelloni in San Francisco. Right then, Calvin attempts to drop, so I tell James about his epilepsy and how I am more than half expecting he might have a seizure tonight.

James tells me that someone very dear to him had epilepsy and died too young after having a grand mal seizure followed by a heart attack. Looking into his sunken eyes, I express my sorrow and ask when it happened. He tells me, and I can begin to imagine how difficult it must have been for him, wondering if it was what put him off track. I am reminded how the world should never judge folks who are homeless or struggling and asking for our help; we can never know their reality unless they tell us.

As we approach the Deli—my drooling, wobbling, nonverbal, incontinent, seizure-prone son toggled to me—James and I agree that life sucks, is hard, and that sometimes it is good. We express our shared contempt for the apparel line called Life Is Good, with its shitty little graphics of sun rays and flowers and Labrador retrievers and beach chairs and happy-as-fuck stick figures. He holds the deli door open for us and, as we squeeze by a crowd of other customers, I ask him what he wants to eat. The deli owner, our good buddy Tony, stands behind the counter and greets us.

"Can I have a bacon, egg and tomato on a bagel for James," I say, gesturing to my guest.

Tony, being one of the most generous guys I know, charges only two dollars to my card. Thanking him, I turn to James and say that I'd like to join him for lunch but that Calvin is pretty spent and not very good at sitting still. I pat James' shoulder and he smiles when I tell him it's nice seeing him again, to take care and I'll see him around. As I leave the deli, I wonder if I should turn back and try Calvin's patience; if I can find James again, next time I will.

Calvin makes it back through the health food store to the parking lot in the rear. When we reach the car he smiles (with relief?) and I praise him for what a stellar job he has done walking eight-plus blocks, and so willingly; six months ago he'd drop down after less than one block. My boy beams as I bend down to kiss his face repeatedly. Next to us, a younger woman—one who I think must be a mother—drives past in a minivan. Glancing out of the corner of her eye, she grins at us.

Life sure sucks. Except when it doesn't.

A similar scene from four years ago.

close your eyes and smile

I feel a slight dull ache just behind my eyes. I'm tired, and I know why. Last night I had nearly too much fun—and champagne—at an annual Oscar party in Portland, Maine.

The gala, hosted by my homie Tim who goes by the alias Swifty (embodying the famous Hollywood agent Swifty Lazar) was his twenty-fifth soiree. About fifty of his dearest friends—forty-five, or so, of them men—packed the loft of a downtown sports bar. As usual, the gig came equipped with a half-dozen giant wall-mounted televisions, a few big speakers, bottomless glasses of champagne, a red carpet with a professional photographer, appetizers, a catered sit-down dinner and dessert. Guests arrived wearing their fanciest duds, including several chic tuxedos. With his signature waxed bald head and large black glasses, Swifty, acting as our master of ceremonies, guided us through the evening with clever commentary during each commercial break. He managed the evening's best-dressed male and female competitions, and gave a play-by-play of his guests' Oscar picks, all of us vying for golden trophies Swifty had especially engraved for the event.

After a delectable dinner including salad, pork loin, lasagna, baked whitefish and sautéed green beans, and following a few of the on-screen awards, I stepped up to the mike to read Swifty a limerick I'd written especially for him. It was meant as a sort of lifetime achievement award marking a quarter century of hosting the annual event. With some borrowed cheaters (my vision isn't what it used to be), and having previously sent Swifty's Limerick to a friend's smartphone, I read my poem from the device. My favorite stanza goes like this:

Swifty knows how to host a good show,

With a mike in his hand he’s a pro,

In his tux and black shoes,

He’s a Red Carpet schmooze,

More famous in Maine than fried dough.

With some effort, I managed to recite the first several verses without cracking myself up. But then I arrived at that last line above. Upon reading it, I doubled over, breathless in hysterics, my eyes tearing, even peeing my pants a tiny bit. It was difficult regaining composure, and with my body in a standing fetal position, I couldn't see the crowd though I could hear them erupt with laughter, causing me to lose it all together (though, thankfully not the entire contents of my bladder).

It was a perfect evening. No doubt it is hard to beat a room full of fit, handsome men—some of them couples, married and otherwise, others single—plus a handful of attractive and gregarious women. A few costumes were simply riotous. My chauffeurs came dressed as twin Swifties. Tim (a different Tim than our host) shaved his head bald and his wife Stephanie donned a champagne-colored swim cap, tucking her hair into it neatly. Both of them dressed in tuxedos and wore Swifty's signature black glasses. They had everyone cracking up, especially Swifty himself. Another friend came dressed as Tonya Harding from the movie I, Tonya. He wore a crappy wig yanked back into a tacky early-nineties ponytail. He'd smeared his face and neck in orangey makeup, wore a ladies figure skating costume with white lace-up boots resembling ice skates. His friend, Marieke, dressed as Tonya's mother, brushing her hair forward into crude bangs. She ran a piece of plastic tubing under her nose which masked as an oxygen tube. I haven't watched the movie yet, but seeing this hilarious couple, I didn't need to.

After a few hours of chatting, whistling, clapping and laughing, I said my goodbyes with many hugs and kisses. I crawled into bed just before eleven, my son Calvin sleeping soundly in the next room. Laying down my head, I closed my eyes and smiled, remembering the events of the night—the hamming in front of the camera, sitting on a gentleman stranger's knee for the group photo, meeting some new folks and seeing old friends, weeping a bit at some heartfelt toasts for our beloved host and emcee, chuckling again at all of the gags. In one happy night—the kind I need more of in light of the regrettable condition of our disabled and chronically ill son—I think I might have added ten years onto my life.

Hamming it up with Swifty and the ladies at last year's event

picture perfect christmas

Yesterday we were graced with a picture perfect Christmas, as much as could be possible I suppose, given our disabled, chronically ill child. Calvin did not wake to a seizure, and he had a good morning while we ate cinnamon toast, drank strong coffee and opened the gifts Michael's parents had sent. Michael surprised me by installing eight black-out shades in several of our southerly windows so that I no longer have to struggle with an oversized, floppy piece of cardboard trying to block Calvin's obsessive and incessant efforts to stare directly into the sun. Why we didn't do this ages ago, I don't know.

Calvin's new nurse Rita, who is a glowing gift of kindness, candor, reliability, sanity, humor, professionalism, compassion, punctuality and spunk, was able to take care of Calvin for a few hours which freed us up to walk the dog together—a rare occasion—albeit in driving winds and snow. On the way home from the fields we were ushered into Woody's home—three doors down—by his son Mark who, when he saw us walking past, flagged us in from the cold. Upon shedding our snowy hats, scarves, boots and coats, Woody's son-in-law whipped up a couple of Bloody Marys then, in the living room, we joined the extended family of ten who, at the last minute, had descended on Woody's home due to complications from the storm.

The cocktails and camaraderie warmed our souls, as did the fire in the wood stove back at home. Before Rita left I had just enough time to shovel the driveway and make a batch of chocolate chip cookies while Michael got to work on the crown roast, gravy, mashed celeriac and potatoes, Brussels sprouts, and another batch of bourbon eggnog. Outside, the snow continued to fall.

Shortly after night fell, surprisingly Calvin drifted off to sleep immediately after a semi-agitated afternoon; I sense him ramping up to his next seizure which I think is going to happen soon. Guests arrived—two old friends and two new ones. Eggnog was imbibed. Candles were lit. Music ensued. Pork chops and mashers were dribbled in gravy, sprouts were roasted and tossed in Parmesan. All, including a delightfully light salad, were happily noshed. Two Bouche de Noels—one vanilla, one chocolate—were debated on their merits then quickly, though not completely, devoured. Various artists, paintings, forthcoming photo projects, the #metoo movement, and the opioid crisis were rigorously explored. Russ and Susan's absence at this year's table was palpable and deeply mourned.

It was as decent of a Christmas as we, in our life of relative confinement, could hope for or expect, and Santa didn't deliver any lumps of coal.

a secular amen

Though long ago Michael and I both lost our religion, we still enjoy some of the secular traditions that seem to have been hard-wired into us from childhood. I still like stringing up lights, wrapping a gift or two (one being the exact number I have wrapped this year) listening to a tiny dose—though no more—of holiday music, watching holiday films, donating to several charities and other worthy causes, eating Michael's special meal on Christmas Eve and another one, with guests, on Christmas Day. What I haven't done in several years is to adorn a tree. The joy that decorating used to bring has been lost since it became clear, years ago, that Calvin would not grasp or delight in any of the secular Christmas traditions, including trimming a tree.

For a few years after his birth, every December I'd take boxes from the basement, opening egg cartons and smaller parcels filled with delicate ornaments wrapped in tissue and newspaper. I strung what I call Charlie Brown trees with tiny white lights. The twinkling trees were beautiful, but there was a sadness and hollowness in their making, due directly to the loss of what I had hoped would be a mentally, and therefore physically, healthy child who would help me light and trim the trees. The boxes have remained undisturbed under the stairs to the basement for years.

Today I read an opinion piece titled, When a Grieving Mother Talks, Listen. And though the piece deals with perinatal deaths—stillbirths and babies who die in their first week of life—I can begin to understand the loss while remembering several dear friends and loved ones who have suffered the grief of losing a child at birth. Perhaps in a slightly similar way to those who lose infants, since Calvin's difficult birth and life almost nothing that was familiar about celebrations like Christmas or birthdays feels familiar anymore, and nothing can really fill the void that lost joy carves out of a soul.

We don't get to delight in our child climbing into bed with us on Christmas morn, don't get to see his excitement over Santa's arrival, don't get to relish in making Christmas cookies with him, or witness him tasting eggnog for the first time, don't see him unpeel gifts, play with new toys, read holiday stories, make snowmen, trim the tree.

Though, like I've said before, we aren't Christian, and we don't buy into the commercialism of Christmas, we'd still likely participate in some of Christmas's pageant if not for our disabled, chronically ill child—I mean, Jesus's existence is still something worthy to celebrate seeing as though he was such a cool guy, someone who fed the hungry, helped the poor, healed the sick, didn't judge, loved the most vulnerable, including wayward souls. And though we enjoy receiving greeting cards in the mail from friends near and far, I still feel a pang of sorrow when I open them. Even so, something inside me wants to continue getting them; I find I live vicariously through my lovely friends whose kids are normal, and who delight in normal things. Please don't stop sending them.

And in case you are wondering, we just finished drinking a batch of Michael's great-grandmother's eggnog recipe that has just the right amount of bourbon topped with a cloud of whipped egg white. I'm having a hot flash right now, which somehow feels luxurious. Our friend Lauren just left after a nice visit having played with Calvin in a way no one else does. Calvin is hunkering down in his bed with Michael, squirming around, putting his hands down the neck of Michael's sweater, cooing like a happy baby as he sometimes does, fingering Michael's ear and mouth. Soon we'll be eating an herb-encrusted rack of lamb, a white bean puree, steamed asparagus and pecan pie. Tomorrow night we'll have a pork crown roast, celeriac and potato mash, roasted Brussels sprouts, salad and bouche de noel. To that I can be most grateful and say a secular amen.

birthday gifts and ferris wheels

Though it began with my son having a grand mal seizure, my fifty-fourth birthday became a treasured one. Dear friends from my childhood growing up in Seattle sent me messages. Family members from afar, and homies nearby called to sing me the birthday song. Michael came home early from work and took care of Calvin while I did a little bit of writing, then showered.

Though I was dying to nap, by afternoon—thanks perhaps to cannabis—Calvin had rebounded from his seizure well enough to take him for a ride in the car. We headed up the river to Lisbon Falls, past Michael's new photo studio up to a favorite place called the Big Dipper where I got a hot fudge brownie sundae, a treat I hadn't enjoyed in years. Calvin sat on the picnic table bench—something he wasn't able to manage just a couple of years ago—while Michael spoon-fed him some of his coffee-oreo "noreaster."

Since Calvin continued to do pretty well, we went to the dvd store and rented The Princess Bride, my choice for something light to interrupt the nagging sorrow from recent events in the news and at home. At the grocer, Calvin was compliant and walking strongly and steadily as ever, a gift in itself.

At home, Lauren dropped in for cocktails, followed by Lucretia who arrived with a lovely bouquet of flowers and a basket full of heirloom tomatoes, poblano peppers, broccoli, onions and greens from her farm.

Later, Michael and I opened a delicious Bandol given to us years ago by our lovelies Steve and Gretchen, and with it toasted another spin around the sun. Glasses in hand, we stood outside in the dark, arms around each other while hot, bright flames seared a thick ribeye. When the smashed-potato fries were sufficiently crisp and the steamed asparagus tender (all Michael's doing, of course) we sat facing each other at our butcherblock bar listening to Dire Straights and The Police on vinyl. As we ate, I opened cards, each one with a sweet birthday greeting that made my heart ache missing loved ones. The last one I opened was from Michael's aunt. A photographer in her own right, her handmade cards always include one of her photos pasted on the front. The image on the card, taken from high on what appears to be a ferris wheel, moved me unexpectedly and deeply. A flood of emotion gushed out in a tearful mix of exhaustion, sorrow, regret, love and gratitude. From her perch, she had aimed her camera at a boardwalk carnival and caught a bird's-eye view of striped canopies atop carousels, white umbrellas, kiddie rides, people milling about, and a roller coaster, something which, though it's my favorite ride in the world, I haven't ridden in years. Beyond the midway stretches a vast beach peppered with hundreds of sunbathers and beyond that, at the top of the photo, the teal open ocean. The scene she had captured for me was an enormously rich and vivid world—one beyond my reach physically—expressed in a simple five-by-seven photo.

I released all the tears that were in me, so grateful to—from my relative confines as the mother of a disabled and chronically ill child—be able to experience a new place and imagine myself smelling cotton candy and sea mist, hearing the surf and the gleeful shrieks of excited children, feel myself dart and weave in the salty breeze between happy carnival goers. What a gift to see the outside world on my birthday, from up high on a green ferris wheel.

flowers from Lucretia

soul collage

This morning at six-thirty, my fifty-fourth birthday, I was awakened by the chilling scream of my child going into a grand mal seizure. Its spasms were more violent than usual and it seemingly lasted slightly longer. When it was over I crawled in next to him. There, I am able to hear his heartbeat through the pillow. Not long after he had fallen asleep I sensed his heart rate quicken. No doubt in my mind he was about to go into a second seizure, so I grabbed the syringe of THC rescue tincture and squirted it under his tongue, successfully thwarting another one.

This, the fourth day of various kinds of seizures within six days, finds me weary. Somber weather matches my mood, and yet I am thankful for the rain that is drizzling on trees and shrubs so deprived of water that they've curled up into themselves.

Later, while still in my robe, a knock came at the door. Michael had already left for a day's work. In came my lovely Lauren with a bouquet of flowers from her garden—zinnias, snapdragons and geraniums in the juiciest of colors. In her other hand she held one of her creations, a soul collage, in which she pastes cut-outs from glossy magazines, arranging them in space on a two-sided card wrapped in cellophane.  

A mere glimpse of the collage got me to me weeping, just seeing the boots, a nod to my many pairs, in particular to the pointy-toed studded ones—ass kickers—Lucretia gave me. Lauren had included a woman in rolled up jeans—the way I like to wear mine in summer—reading a book against a backdrop of birthday candles and an autumn scene complete with the acorns so profuse in these parts during early October.

She embraced me as I wept. Over her shoulder I studied the backside of the card which features an auburn-haired woman surrounded by flowers, another sitting on a throne of pillows, her hand on a bow as if a warrior, and a third woman standing on a large ball juggling six smaller ones. In the make-believe room, there are books and baskets and ornamental rugs and a familiar pair of French doors leading into a canopy of trees. I was deeply touched by Lauren's thoughtfulness and insight expressed in her postcard homage to me, my life and my home, a place I often feel stranded in, and yet one I am reminded to be most grateful for.