blind luck

The sound Calvin makes when he has a grand mal seizure is no sound a parent wants to hear coming from their child, nor anyone for that matter. It's blood-curdling. Sometimes it's strident, a bit like a barking dog or seal, and at others it sounds like someone being murdered. The screech that ripped me out of sleep Wednesday morning was doubly loud, long and alarming for some reason. To add insult to injury, it came on the heels of last Monday morning's grand mal.

It's a sinking feeling watching your child seize, especially when there's really not much to do save administering emergency medications, which have their own slew of troubling side effects, though luckily aren't usually necessary for Calvin since for years his seizures have stopped on their own. The clusters, however, are harder to control.

And so, to avoid subsequent seizures, when the seizure was over I incrementally syringed two milliliters of my homemade THCA cannabis oil into the pocket of Calvin's cheek and watched him drift back to sleep. Then, to monitor his breathing, I crawled in next to him—head to toe now that he's bigger—held his little foot in my hand, and my brain went to work on the days' events.

I thought about how last Tuesday authorities found the body of fourteen-year-old Theo Ferrara, the boy who went missing in the next town over nearly two weeks ago, and about whom I mentioned in my last post. His body was found in the waters of Maquoit Bay near Bunganuc Point not far from where I drive with frequency, and just downstream from where I took this photo.

Considering the lightweight clothing Theo had been wearing when he was last seen—a windbreaker, t-shirt, shorts and flip-flops—the chilly nights dipping into the forties had added to my worry. Since his disappearance, I'd been going to bed thinking of him and hoping he'd turn up safe and sound somewhere. The news is tragic, and authorities won't know the circumstances of his death for weeks.

To aggravate the tragedy of Theo's death, on social media earlier last week parents were posting pictures of their children in celebration of National Daughters and Sons days. While I love, am grateful for, and am proud of my sweet boy Calvin, the feelings the photographs evoked are bittersweet because too many of my friends' precious children—Lily, Rose, Rainier, Jennifer, Will, Tyler, August, Kelli, Martin, Mikki, Mike, Kevin, Ronan, Charlotte, Arnd, Michael, Elisif, Melissa, Matt, Cyndimae, Katie, Christina Taylor, Finnegan—left this earth far too soon. Still others may have tried to have had children but couldn't.

And so, as I lavish attention on my own child, and despite Calvin's challenges and afflictions which send me reeling and into dark places, I try not to forget our blind luck. I try to hold in my heart others who have suffered the greatest loss any parent could know. And, in moments when I complain and feel deeply the frustrations of raising my enigmatic, impossible child, I'll try my best to hold him a little more often, a little closer, and a little longer than when otherwise I might be apt to ignore.

lost boys

I was going to write about why I haven't been writing much (instead, busy with running, some autumn gardening, taking care of a recently-sick Calvin, and doing online modules to complete my DSP (direct support provider) "training" so that I can begin being paid a little for taking care of Calvin. I was going to write about the fact that, on a moderate dose (100 mgs) of Calvin's newest drug, Xcopri (cenobamate), he's been going longer between seizures (thus having fewer), and that he didn't have a fever or a febrile seizure after last Friday's Covid booster. I was going to mention that he hasn't had any focal seizures since February, and that, overall, his behavior is better.

I was going to write about our near-perfect trip to the Cumberland County Fair yesterday where, under hazy, lavender-ish skies, Calvin did some amazing, albeit brief, stints walking by himself (too good to be true? we wondered aloud) down and back through a barn of draft horses and even a bit further. I was going to write about how straight and stable he sat at a red picnic table drinking from his sippy cup, that he enjoyed bites of warm, cinnamon-sugar donut, that all day long he signed "eat" very well, putting his finger to his mouth when he wanted more.

But, halfway through our time at the fair, when the crowds began to gather choking the pathways, and the midway rides ignited their noisy motors, and the hot sun began to filter through a bit too strong, Calvin's relative well-being seemed to go south. His intermittent walking deteriorated, so we put him back into his stroller. His skin felt hot. His face went pale. He began to perseverate, elbows crooked and waving, knitting his fingers. On the drive home, he batted and grabbed for me incessantly as if to be saved from something.

Then last night came the perfect storm—the new moon, a drop in the barometric pressure, perhaps a semi-latent affect from Friday's Covid booster, the sky opening up to unleash one of the hardest downpours I've heard since moving here—and at 2:45 this morning, Calvin had a grand mal seizure. It had been fifteen days since the last one. This time, when the fit was over, I gave Calvin twice as much of my homemade THCA cannabis oil as I usually do, hoping to prevent a second one from striking like they often do. Thankfully, it seemed to work.

As I laid in bed next to my boy in the pitch black of his room, I thought about the day's events and the looks Calvin got from strangers—some kind, others curious or suspicious, perhaps even put-off. I thought about the rides I would've liked to have taken him on, the animals I wish I knew if he saw and wish he could enjoy petting, the contests I wish he could've entered if he wanted to, the fact that, in ways, Michael and I wish we could've been at the fair without him.

As Calvin slept, at times arching, I thought about our ride home through parts of Freeport, Maine, where good neighbors and authorities were and are actively searching for a skinny fourteen-year-old boy named Theo who went missing four days ago wearing shorts and flip flops as nights dip into the forties and fifties. I wondered what happened to him. Was he snatched up by a nefarious actor? Did he fall into a hole or into frigid waters? Was he bullied into a state of anxiety, depression or some sort of submission? Did he end his own life? Was he trying to escape something or someone?

Then, I thought about the bluegrass concert given at my friends' gorgeous farm last Friday night in memory of their young and precious son, Finnegan, who died in a kayaking accident last November. So many amazing and loving people gathered together to make food, music, and memories in honor of a beautiful boy—at nearly 24, a young man, really—who was lost far too soon. I felt grateful to have been able to be there, at least long enough to give and get some hugs, to visit with beloveds a bit, and to remember my young friend, Finnegan, for the incredible human being he was.

In thinking about Theo and Finnegan, I considered the grief I feel over my own lost boy. I often wonder what would have become of Calvin—or what he would have become—if he hadn't been born missing most of the white matter in his brain. I mourn the loss of a boy who is flesh and blood sitting right in front of me—the loss of his artistic, athletic, academic, physical, philosophical, humanitarian potential. The loss of seeing him make friends and meet new people, and of us becoming their close friends, too. The loss of seeing him fall in love. The loss of the potential of having a growing relationship with our adult child. The loss of possibly having a grandchild or two to dote on.

Then, I think about my blog and memoir in progress and how I'd never have started writing them if not for my boy. Perhaps I wouldn't be quite so charmed by gardening if I didn't feel the need to shape nature since I can't control my son's regrettable disabilities and miserable afflictions. Maybe I'd never have started running (again) if not for need of an escape from a hard and restricted life of mothering an impossible infant-toddler-teen. Maybe I'd never have embarked on my pandemic back roads travels, which have bore new friendships, sparked a love for taking copious panoramic photographs, caused me to reflect so deeply on life and the mundane. These amazing endeavors I'd likely never have chanced upon if not for Calvin.

And though it's no consolation, my lost boy and what he has brought to me and to others is so worthwhile, and worth pondering. 

to love life

We sat in the closeness of the sticky mid-morning heat, our bare arms and thighs touching. The rickety bench Woody gave me, one that dropped another screw recently, held us even as it swayed under our weight. I wrapped my hand around hers and kissed her cheek. We drank little rivers—she a sparkling citrus-scented water from a can, and I tap water held in a heavy green glass. We listened to a goldfinch sing as the wind swept through the trees. It felt as if we were the only ones in the world, and tears of sorrow came to us both as we contemplated life's tragedies.

During our walk earlier, she and I talked of mosquito bites, politics, running races, friendships, gardens, daughters, sons. Something flew up the open leg of her shorts and stung her repeatedly. I peeked into the back of her waistband and a bee—or was it a wasp?—flew out. She bent and plucked flat leaves of plantain, put them in her mouth, chewed them into a mash and applied tiny wads to the stings as a medicinal salve meant to draw the poison out.

"Everything we need is here for us," she said, meaning that nature is the original balm, then adding that we've just forgotten how to use it. I thought of Calvin's cannabis oil and how well it seems to help quell at least some of his seizures.

On our walk home, we stopped to cut—with permission—bunches of nodding sunflowers from our friends' backyard. Some of the smaller ones, which were still closed tightly like little fists as if reluctant to open to today's world, reminded me of my newly-born, four-pound, six-week preemie's apple-sized head and cinched brow. What a difficult yet extraordinary road it has been since then.

Later, when early evening came around and as I washed up dishes listening to my Calvin moan and rustle in his bed upstairs, I was again on the verge of weeping. My son is so often out of sorts or miserable, suffering from one thing or another inevitably brought on by seizures and/or their drug treatment. Though it had only been five days since his last grand mal, I could sense one coming by his bad balance, stubbornness, intensity, neediness, sour breath, eye poking, fingers in his mouth and mine, the new moon on the rise. I thought again about my earlier conversation with my friend. While strolling along a wooded path we had discussed abortion and the recent Supreme Court's abysmal decision to reverse Roe. I told her that, had I known for certain early on in my pregnancy that Calvin would be born missing most of the white matter in his brain which would cause him to be legally blind, uncoordinated, nonverbal, incontinent, cognitively impaired and—worst of all—be pummeled by thousands of uncontrollable seizures, I might have chosen to end the pregnancy to spare his suffering. To say that life for him is limited and presents major daily challenges, pain and miseries would be a gross understatement. Lamentably, there is so very little that Calvin seems to enjoy, mostly because he's been ruined by the drugs which cause him, at the very least, to be impossibly restless, making it harder, too, for me to live the life I want to live.

Just before my husband arrived home for the evening, I sat near the open French doors which look out onto the garden. There, while I reflected on my day and wrote this post, I came across this poem by Ellen Bass:

The Thing Is

to love life, to love it even

when you have no stomach for it

and everything you’ve held dear

crumbles like burnt paper in your hands,

your throat filled with the silt of it.

When grief sits with you, its tropical heat

thickening the air, heavy as water

more fit for gills than lungs;

when grief weights you down like your own flesh

only more of it, an obesity of grief,

you think, How can a body withstand this?

Then you hold life like a face

between your palms, a plain face,

no charming smile, no violet eyes,

and you say, yes, I will take you

I will love you, again.

    It struck me that I'd come across a poem so fitting for me, for my life with Calvin, and for the day I had just lived. 

    

    Just as Michael and I were sitting down for another sublime dinner in the screen porch, I heard Calvin make a strange noise. In that instant, I thought again about grief—ours, his, my friend's, everyone's—as I bounded up the stairs to find my sweet, pure, innocent beloved son—the boy who rocks my world in the most terrible, lovely, heavy (an obesity of grief) and amazing ways—as he was seizing again. I stroked his thigh and Michael embraced him and kissed his face. We've done the same perhaps thousands of times before and will very likely do the same a thousand times more, because Calvin is our precious son, and because it is our life, and in most ways we love it, and what else is there?

 

while alive

delight in the mundane. step outside—of doors, shoes, boxes, habits, expectations, comfort zones. dance like a maniac whenever compelled. sing until it hurts. scream until it swells and burns. let go more than once in awhile. marvel at the day-to-day. honor every emotion—bliss, anger, grief, sorrow. trust science and trust your gut. stand up for yourself and others. pursue truth. read books voraciously. explore new genres. try unfamiliar foods. keep your friends' secrets untold. jump pantless off low bridges into warm waters. eat cake for breakfast. hug others often as possible. damn all forms of bigotry. say i love you often. let go of petty obligations. question organized religion and its patriarchal architecture. embrace nature. befriend those who are wildly different from yourself. live simply. give to others. turn to music and film. breathe deep. love misfits and weirdos. forgive yourself and others. release regret and resentments. abandon fear and angst whenever possible. practice compassion, kindness, respect, inclusiveness, gratitude, humility. travel the world if you can, and if you do, get to know the locals, their language, their food. expect success. fail miserably—at anything. imagine. wonder. create. explore. find a perch or cave from which to ponder the world. reflect. muse. hold onto hope. get lost. take risks while taking care not to hurt others. founder, but move forward with as much grace as can be mustered. listen well and live awhile in others' shoes.

looking into a chunk of ice i found on the side of the road.

other side of darkness

This side of the winter solstice (the other side of darkness) I start counting the days until spring. Until the snow melts and the ground thaws. Until I can begin spreading mulch and picking up broken limbs. Until I might see the green tips of crocuses pushing up through the soil. Until I can walk again with my son around a soft grassy yard. For much of spring it'll still look like November, but at least I'll be able to hear the cardinals, finches and catbirds singing. To me, that is the sound of hope and of new beginnings.

Come this spring, I won't just be Calvin's mother, I'll be his legal guardian when he turns eighteen. It's because he can't do anything by himself or make any decisions. This year, Calvin would have been a high school senior if things hadn't gone so miserably wrong at the start. Next fall, he likely would have been college-bound along with so many of his peers. Instead, he'll stay in high school for another four years. I have no idea what kind of arrangements we'll make when he turns twenty-two. The notion of him living in a group home is as sad as it is incomprehensible—who would love him and hug and kiss him and sleep with him and know his idiosyncrasies, preferences and gestures? But the thought of taking care of him another dozen years, much less into our seventies and beyond, is just as daunting and laced with its own nagging questions, angst and complexities; It's hard to go there.

The other night, Michael and I were discussing misfortune—ours and others'. We realized that Calvin's mishap—for lack of a better word—is an unthinkable tragedy, what with his brain's missing white matter, his profound visual deficits, wordlessness, relentless seizures and other impairments. And though we'd give anything for Calvin to be healthy and "normal," we feel fortunate in so many ways, feel we have perhaps a richer life because of him, strange as that may sound especially considering my frequent complaints. Strange, too, is how in some ways we have adapted to our tragedy, while having not gotten used to it at all—the loss, the grief, the hurt, anger, deprivation, resentment, frustration, exhaustion, the relentlessness of it all. Daily, we live with the reminders of the losses our son embodies, a boy who might have been charming and athletic and smart and accomplished as some of yours, had things not gone so wrong. And, it's as if it happened overnight—having one day hoped for and expected a healthy child, and the next day finding out a portion of his brain was gone, then being told he might never crawl or walk or talk. Even so, we continue to survive and, in some ways, thrive because of the rare experiences and remarkable people we've encountered along the way and how, because of Calvin, we see the world differently.

Yes, on the other side of darkness, life goes on. I suppose what lightens the gravity and blackness of catastrophe are time and warmth, light and love—like spring—all of which help things mellow and grow. That kind of sustenance seeps into the cracks and craters left in the wake of disaster, and while it doesn't necessarily make misfortunes right or broken lives whole, it softens the edges of hardship like rivers polish ragged stones. In that way, disaster can give rise to a life all together different—though not wholly unrecognizable—from what it was before. I think of grief and loss as if rivers coursing through my being; they have undoubtedly shaped something new in me. Made me softer and at the same time steelier. Perhaps a deeper thinker and feeler, even, and brought me to breathtaking places I would have never gone, or dared to go, before.

dear finnegan

i wish i knew you better. though perhaps i did without really knowing it, until now, maybe. until having been compelled to think of you more deeply since your passing last month, which was far too soon. i wish i had carved out more time to be with you. in the same way i wish i could with my own son, i wish i knew your innermost feelings, hopes and dreams. in each case, that will never be. still, i miss you, and the world misses you, too, finnegan.

i think i knew you mostly through knowing your people. like your kin, you had a special kind of pull. like gravity on tides. a vessel's longing for water. a river to open ocean. waves yearning for the shore. and, like your family, you were a poem.

like your mother, my dear friend lucretia, you were generous. blushing. earnest. nurturing. hard-working. beautiful. welcoming. creative. down to earth. maverick.

your father, michael, was in you too. you were gifted. adventuresome. athletic. artistic. handsome. industrious. clever. funny. loyal.

like your siblings, seamus, maeve and daire, you were an old soul from the beginning—wise beyond your years. genuine. kind. humble. pure. accepting. thoughtful. intelligent. insightful. tender. caring. exceptional.

and, yes, you were exacting too.

yesterday, at your memorial, hot apple cider was served in paper cups under a peaked white tent atop a slope. school buses parked aside the field having just shuttled scores of mourners eager to celebrate and remember you. men in woolen shirts and boots gently poured watery rings around the modest bonfires they'd built, the crackling timber turning satin-black and ashy white. smoke and its consoling aroma lingered before dissolving into the chill. as the ceremony got underway, hundreds of folks began streaming downhill toward the podium. from the center of the crowd, i waded crosscurrent hoping to reach the edge, slowly weaving between people as best i could to avoid disturbing the flow.

i stopped alongside a low wire fence flanking a field of windswept grasses. the crowd stood silent on three sides of me, a sea of winter jackets, and hats with fluffy pompoms. there were people of all ages. many of them dear to me, though most of them unknown. as a dozen or so of your closest friends shared stories of knowing and loving you, finnegan, i listened while sometimes gazing out over the pasture. i imagined you running its length as a child. perhaps doing cartwheels and somersaults on days like these. at that moment, the meadow—which just three weeks earlier had been shrouded by a river sky—resembled a vast channel. its tufts of windblown straw appeared as gently rippling rapids, though golden, each wave cresting in the same direction—downstream. thirty minutes on, i glanced back over the field to see the half-moon rising in the southeast. a tiny cloud or two drifted amid the liquid blue sky, the sun nearly kissing the earth as if mother and child. thinking of you, finnegan, i was moved. bowing my head, tears dropped onto soggy reeds beneath my feet as i imagined standing in a river next to you.

at your gathering, a wise, gentle woman said that grief's element is water. i don't know if that's true. but it makes sense to me, finnegan. grief and loss, like water, can knock us down like a breaker in the sea. i know. it can move us and move through us, like a drink. i know. and as tides and rivers are wont to do, grief can bring us somewhere new. i know well that truth; my own river—its headwaters born with calvin—continues. but if anyone had the ability to move others in life and in passing, clearly, finnegan, it was you.

river sky

For the first time ever, I traveled the familiar back roads on foot. It was an all-together different experience than driving the same route. More intimate. More wide open. More wild. More of everything I desire. I wanted to lose myself, my angst and grief in it. Dissolve into the big blue sky.

Although I wasn't solo, the walk reminded me of backpacking for seven months through Europe when I was only twenty-three—back when my world first opened up—often hiking lonely country roads from bus stops and train stations to hostels and inns. Having been swept back in time, I closed my eyes for a bit and lifted my chin to better feel the sun on my face and to smell the salty breeze. I noted the new black asphalt under my ratty white sneakers. Wind softly combed the pines as if to whisper as I stopped briefly to regard clumps of wildflowers gone to seed. Puffy white clouds settled on a horizon made of vast banks of trees. In that moment, it was quiet and gorgeous. Under the big sky, I felt my own insignificance, while also hoping I offered the world something in return for its generosity. And, I thought of Finnegan.

Going slow motion in what has become one of my favorite spots in the world offered me a much-needed release—from relentless angst over my disabled, seizure-prone son Calvin, certain nagging questions, petty grievances, and intense sorrow after the accidental death of my close friend's child, Finnegan, who, despite not seeing him often, was also dear to me.

My back roads companion was someone I befriended this fall. While driving around with Calvin during the first year of the pandemic, I had frequently passed Lynn and her husband as they walked from their house near the point down a long wooded road. As she and I roamed the roads together, we talked about friendship rifts, parenthood, love, loss, grief, romance. It felt good to be in the presence of someone fun and new who buoys me and seems to get this person who sometimes feels misunderstood.

As Lynn and I padded along, my mind kept drifting to my friend's son, Finnegan. He died last week in a kayaking accident on a raging river. He was young, talented and vital. Full of love and promise. I remember his smooth, tawny summer skin and blushing cheeks. I liked his spiffy hairstyles. I recall him playing the fiddle for me and a restless Calvin in his family's kitchen, the music seeming to come to and from him so effortlessly. I remember his smile and warm embraces whenever I'd stop in to visit, which wasn't nearly often enough. Like his younger siblings, he was an old soul with a generous spirit whose humility might've been mistaken for bashfulness. And, like the rest of his kin, he was magnetic, but in a soft, warm, gentle sort of way. I've adored the moments spent with him and his family. Unlike so many others, they're memorable because the family is so welcoming, loving and real. Regrettably, I didn't—often couldn't because of Calvin—carve out enough time to be in his presence. And, just at the age when the larger world begins opening itself to young adventurers, nature's wildness took him. He was about to turn twenty-three.

On our car ride yesterday along the same backroads, Calvin spent most of it going berserk. As usual, I couldn't know the source of his misery. Regrettably, sleep deprivation had drained my patience for his mania, and I barked and cussed through his shrieking and flailing. As we drove past the farm where a few close friends were gathering around a bonfire to grieve the loss of our friend's son, Calvin continued to melt down. Just then, I glanced at the sky above the field. It was magnificent—moody in places, placid in others with large swathes of leaden darkness amid frothy patches of lavender-gray and blinding whiteness. It's a river sky, I thought, which made me focus on Finn and forget about Calvin's grousing. In that moment, rather than being self-absorbed and wretched, I was moved to be grateful—for my son and husband, my friendships new and old, for Finnegan and his family and their many friends, for those beautiful, rambling back roads and the big sky which, whether cloud-strewn and stormy, starlit or clear and blue, is forever breathtakingly beautiful.

lonely road

When channeling my inner Joni Mitchell, and with the exception of a few lines which I've taken the creative license to omit below, I can imagine having written this bittersweet song—All I Want—about me and Calvin. When life mimics art, it can be a killer.

 

I am on a lonely road and I am traveling

Traveling, traveling, traveling

Looking for something, what can it be

Oh I hate you some, I hate you some, I love you some

Oh I love you when I forget about me

I want to be strong I want to laugh along

I want to belong to the living 

Alive, alive, I want to get up and jive

I want to wreck my stockings in some juke box dive

Do you want—do you want—do you want to dance with me baby

Well, come on

All I really really want our love to do

Is to bring out the best in me and in you too

I want to talk to you

I want to renew you again and again

Applause, applause—Life is our cause

When I think of your kisses my mind see-saws

Do you see—do you see—do you see how you hurt me baby

So I hurt you too

Then we both get so blue

I am on a lonely road and I am traveling

Looking for the key to set me free

Oh the jealousy, the greed is the unraveling

It's the unraveling

And it undoes all the joy that could be

I want to have fun, I want to shine like the sun

I want to be the one that you want to see

Want to write you a love letter

I want to make you feel better

I want to make you feel free

2017, photo by Michael Kolster

the still waters of yesterday

today, i twice drove out to simpson's point to unwind. the still waters of yesterday had been replaced by endless tiny whitecaps lapping the shore. i cut the engine. with the window down and my kid in the backseat chewing his shoe, i simply sat with the sun in my lap and listened to the world.

to be honest, this yearlong stint taking care of calvin all day every day is taking its toll on me. at times, he's the sweetest child that exists. at others, he totally grates on my nerves. it doesn't help that i don't always know what ails him. time spent with him is at once fulfilling and taxing. stressful and relaxing. unnerving and mundane in impossibly beautiful and tragic ways.

after seventeen years, still i sit with my grief. though mostly upbeat, i'm reminded of my loss on a daily basis. today, i saw a mother in a front yard making a chain of big, iridescent bubbles for her toddler to chase. i watched two boys on the sidewalk bouncing a basketball between them. i saw college students rolling by on boards and four-wheeled skates—all things calvin will never be able to undertake.

i'm mostly home still raising a seventeen-year-old baby—spoon-feeding, changing diapers, cradling. the grief, however, isn't nearly as debilitating as it used to be. i no longer double over on the street. i no longer buckle—sobbing—between friends holding me up as i drag my feet. i no longer weep while swimming, tasting tears, sweat, soda ash and chlorine. but the loss of not having had a healthy child stays with me. like rings inside a tree. or crystals inside a geode. it's enduring. it's in the silent hours of a child who can't speak. it's in the way he sometimes moans and growls, shrieks and seizes. it's in the endless days' emptiness. the broken promises of parenthood. the conspicuous lack of a child's questions—about math, life, the moon and stars, love and justice. the loss persists in the inability of knowing his hopes, dreads and dreams. it's in the absence of his friendships, sweethearts, heartbreaks, epiphanies, all of which would be full of meaning and feeling, and not just for him.

sometimes, i find myself pining for the still waters of yesterday. of the time when i was childfree. perhaps back when i was single. of the days when i was still climbing trees. but then, as i watch the waves' unceasing action against the rocky shore, i realize how life now—with my messed-up kid—is ridiculously rich with roller coaster loops and dives and turns, breathtaking and rare perspectives, and spectacular, transformative waves, the likes of which still waters might be envious. 

The still waters of yesterday

the gravity of it all

The gravity of the sun and moon makes tides ebb and rise, makes spells befall my son. At least it seems so. Twice he seized this weekend, on the brink of a new moon. The arrival of both fits was stealthy, no major ramp ups, no mania, no marked malaise, just his usual restlessness on what has become—because of coronavirus—an ever-shorter tether.

In the wake of last night's grand mal, Michael and I sat in the dark with Calvin, I on a step stool next to his bed, Michael in a chair he brought in from another room. Plates in our laps, we ate dinner in silence as our boy drifted back to sleep. Occasionally, I put my face next to Calvin's, or licked a finger and held it under his nose to make sure he was still breathing; it's the twenty minutes, or so, after a grand mal when the risk is highest of succumbing to SUDEP (sudden unexpected death in epilepsy) particularly for someone like our son.

Just before midnight, I woke myself crying out in a dream about my late father, though not the one in which he is whisked helplessly into space by a roped bundle of helium balloons caught around his ankle. As I came to, gale force winds were hammering the house and rocking the pines in their foundations. Rain and debris from nearby trees pelted the windows. Along with the new moon, I wondered if the approaching torrent had weakened Calvin's fragile seizure threshold. I padded into his room and slipped him a little extra THCA cannabis oil hoping to prevent another seizure from gathering momentum.

For over three hours I laid awake listening to the storm. I tossed and turned: worrying about my loved ones who got Covid and wondering if they'll fully recover; exhausted from nine months of caring for Calvin six to eight hours most days by myself; grumbling about another of Calvin's IEP meetings in which his one-on-one therapies continue to be whittled away despite the absence of any in-person or remote schooling since March. Just after I heard the clock chime three, I finally fell asleep.

Today, Calvin has been cat-napping on the green couch. He sleeps for minutes at a time, wakes, gets off the couch—or me—then on again and rests some more. We will likely spend the entire day this way as he recovers from the grand mals.

As I sit here considering options for a title of this post—gravity, new moon, life storms—I search my blog to ensure I haven't used any before. I type in the word gravity and find this one. I read and mull over each word, nodding my head slightly as I go. Then I watch the attached video, which gives me the chills. At the end my eyes and nose are stinging, my face crumpling up as I begin to weep. It's so hard, this life with Calvin, made worse because of coronavirus and the absence of school or nurses to help ease the load. If not for my husband, the weight of it would be colossal—the seizures, the sleep deprivation, the angst, grief, loss, frustration, anger, inertia—the immense gravity of it all.

"i am" poems

On Saturday, I received a second letter from my new pen pal who has been on death row in an Alabama "correction facility" for ten years. He's there along with about 165 other men who have also received death sentences, each languishing in their own little cell. Studies show that as many as four percent of death row inmates are likely innocent of the crimes they've been convicted of committing. That's equal to nearly seven innocents in that one Alabama prison alone, in a nation where some people cling to the platitude, All lives matter.

In response to my pen pal's letter, I told him I had recently finished the book, Reading with Patrick. It's author, Michelle Kuo, writes deftly and movingly about her time as a high school teacher in a small Mississippi Delta town. I went on to tell my pen pal that the author asked her students to write "I am" poems. I wrote a quick one in my letter to him:

I am strong
I wonder how life would have been if my son were "normal"

I hear my son complain, and I don't know why

I see the wind blowing through the trees

I want to make the world a better place

I feel sad some of the time

I cry when I am overtired and lamenting the loss of my child who is still alive

I understand how important it is to listen to others

I dream of a just and loving america and world

I try my best, but I still fail

I hope life gets easier, though I am still grateful for may things

I asked my pen pal if he might want to write an "I am" poem and send it back to me. I am hoping so.

At the end of my letter to him I drew a picture of our dog, Smellie, then signed off by saying, Know that I am thinking of you. I folded the pages around a self-addressed stamped envelope plus a family photo taken seven years ago which I discovered, slightly crumpled, in the back of my desk drawer.

I can't help but wonder what my son Calvin, who is nonverbal, cognitively and physically disabled, might write in his own "I am" poem if he were able. But since he isn't, I wrote a version for him, imagining him capable of certain complex thoughts:

I am a fighter
I wonder why I'm not going to school anymore
I hear my mom drop the F-bomb a lot
I see my mom get annoyed with me sometimes
I want to be able to do things by myself
I feel frustrated when I'm not understood
I cry when my head and tummy hurt
I understand that I am loved
I dream of being able to speak
I try to do my best at everything
I hope one day my seizures stop

Rereading my poems, I'm reminded of how vital it is to see life from another person's perspective, which is the main reason I was interested in raising a child. I want to understand why and how other people grieve. I want to bear witness to other's struggles and to feel empathy. It seems that the America we live in—one which too often embraces the myth of rugged individualism and mantras like, Don't tread on me—suffers from a lack of understanding and empathy for those who face certain stresses and obstacles in their daily lives which hinder their ability to live life fully, enjoy liberty and pursue happiness. I'm thinking of Americans who are homeless, hungry, hurting, cold. I'm thinking of Americans who are disabled, hated, disenfranchised, imprisoned. I'm thinking of Americans who don't have jobs, health insurance, savings, and those who can't vote.

I slide my folded letter and family photo into an envelope, address it, seal it, stamp it and pop it into the mailbox for its trip to Alabama. Doing so, I imagine my pen pal passing long hours in his cell. I consider the fact that he never got the chance to vote and will likely never be able to vote for the leaders who will write laws and policy which directly affect him. I think of the number of innocent people who are imprisoned and on death row who are disproportionately people of color. I wonder what kinds of "I am" poems they'd be writing if they could.

Photo by Michael Kolster

emotional landscape

There are days that are so dark that I wish my son would disappear into the ether, dissolve like a lozenge on my tongue, seep into the earth like so many drops of rain. And yet, I am without a doubt a better person having carried and cared for him all these years, and for that I owe him a debt of gratitude. But sometimes I wonder how long I can keep up with the intensity of care he requires, and I can't imagine others loving him, cuddling him, and responding to him—especially as he grows—in the way he needs to be happy, healthy and to thrive.

Thursday was one of those days—hard on my body, my psyche, my spirit. I got frustrated. I lost my patience. I screamed, once, long and hard and primal. I grieved. I felt a valley of contempt for Calvin as he screeched and writhed and moaned and flailed all day long and into the night in what we finally concluded was probably a ghost of benzodiazepine withdrawal. It's days like these that sink me, if only momentarily, into oceans of blues.

Among others, Calvin is at the root of my dark feelings. Pain and anger. Loss and grief. Frustration, hurt, impatience. Resentment and contempt. Since his birth, I experience these more deeply than ever before. But I embrace and honor them—these most human emotions we are sometimes taught to betray, suppress, abandon—while trying not to wallow. Perhaps they've gained gravity from the chronic grief of losing a child who is still alive: the loss of a boy who, if things hadn't gone wrong, right now would be riding bikes and running around town with friends; the loss of a boy who right now might be writing down his thoughts, might be studying the stars, protesting injustice; the loss of a boy who, in a couple of years, would perhaps be going off to college or exploring parts of the world like his parents had done.

But I am grateful for how this grief over my child informs my world, my thoughts, feelings and notions. Maybe, like befriending and falling in love with people here and abroad— folks of different backgrounds, religions, races, abilities and nations than my own—being Calvin's mother has helped me to better imagine, understand and consider what life might be like for others who struggle with hardship.

Maybe, by being Calvin's mother—getting injured by him, seeing him repeatedly seize, hearing him screech and holler, feeling so helplessly unaware of the source of his misery, watching him barely develop, worrying about his and our future, losing sleep, even having contempt for him—has taught me how to better forgive people who hurt, offend, betray, bully, wrong and deceive. I wager everyone has shit going on in their lives that hinders their ability to cope and to at times really see themselves, their words and actions, and to appreciate that of those around them, even ones they love.

Of course, there are the sunny emotions like joy and love, which live in concert with the virtues of selflessness, empathy, compassion, patience, humility, grace, charity, gratitude, apology and forgiveness. Calvin's purity and innocence inspire me to practice these, at least when I'm not in the thralls of a pity party or having my hair torn out. If only I were as gifted as he at delivering them so unconditionally. Regrettably, I fail, perhaps particularly in the patience department, though I wager my husband would disagree.

And so, upon reflection, it seems the richest, most interesting emotional landscape may not be the most clear, placid and brilliant, but one that has depth and shadows. Maybe it's one of despair juxtaposed with hope, of contentment alongside struggle, of joy straddling sorrow, each one complimenting the other, each one begging to be explored. Maybe the most meaningful days are when a troubled, agitated, impossible boy can melt into my arms, grinning and giggling at my kisses, and wherein we both discover sublime calm, if only for a moment.

seeing and breathing

the tick tock of clocks belies the passage of time. slow-motion video feels more real. i reconsider breathing—quick and shallow, deep and labored. I regard his hollow eyes and shiny lids and wonder if i am seeing things. he takes my hand. his is blue-veined, skin like tissue. i stroke his arm. rest my palm on his bald forehead. tell him that i love him. get him to crack a smile. if only i could hold him close one last time.

on long car rides i can sometimes flee grief and monotony. like a roller-coaster, even familiar hills and bends and vistas make me feel more alive, as if i'm actually going places instead of in circles. still, i'm grateful for the car and roads and time and space that take me away, even with the kid in tow. the point changes day to day. gray clouds stitched to hard waves become blue skies kissing land and sea. the view is one none of us will ever see again.

there's a scent in the air that i can't finger. witch hazel blossoms are long past. lilacs have gone to seed. fragrant azaleas have spent their lazy blooms. might it be honeysuckle? roses? peonies? not the sickly sweet that used to seep out of calvin's pores the day after getting rescue benzodiazepine. still, i've smelled something akin to that lately. again, i consider breathing. i consider N95 and covid-19.

the kid has been all right. happy, calm and smiling. four days seizure-free. he's eating well and growing like a weed. no bad side effects—yet—from the pharmaceutical cbd. if only he could make it past day thirteen. if only he could run and play and speak.

the cardinals lost their nest to predators it seems. could it have been the gray fox? i read they can climb trees. they're out there, predators. sometimes with feathers, fur, claws and fangs. at others, flabby-faced in suits and ties, uniforms, camouflage or riot gear. often they're incognito. they hurl their barbs and slurs, spray their gas and ammo, their conspiracy theories. hidden in their shade they undo modern policy, press their knees in the necks of the powerless struggling to breathe.

safe in the backseat my kid takes grapes and blueberries from me. he pulls off his shoe and chews it. yanks off his glasses and gnaws their temples and lenses. pulls off his sock and sucks it till it's sopping unless i can stop him. when setting out he almost always smiles. grimaces in the wind when the windows are down. cranes his neck to stare at the sun every time we turn south. i wonder what he knows of this world. if only i knew what he feels and sees.

i make another bedside visit. this time his house is quiet. no humming of the oxygen machine. i close my eyes with him. listen to him breathe. i tell him it is sunny and mild. a great day for gardening and porch-sitting while sipping bourbon and watching folks and cars sail off down the street. i tell him again that i love him. i tell him not to hold onto this world for me.

Simpson's Point, Maine

invisible giant

Walking Calvin around the block yesterday felt like dragging a stubborn dog. He'd start and stop, swerve and hitch, sometimes weaving behind me even as I held onto his wrist. At one point he pivoted and fell onto his back at the edge of the sidewalk. Since my right hand had Smellie by the collar, I wasn't able to prevent his fall. Still, I was able to let him down slowly so he didn't hurt himself. Then, he wouldn't budge, so I had to lift him back up. I became frustrated, let Smellie go (she's such a good dog) and yanked my careening kid the rest of the way home.

Thankfully, the remainder of the day was mellow, consisting of a nice car ride and lots of cuddling. While putting on Calvin's nighttime diaper I asked him if he was tired, and he made a little hum. He fell asleep as soon as his head hit the pillow.

After sleeping soundly, Calvin aroused at eleven p.m. in the thralls of a focal seizure, wide-eyed, restless and trembling terribly. I dripped some THCA cannabis oil into his mouth and held his head so the oil had time to absorb and so he wouldn't drool it out. I took his temperature, changed a soaking diaper, then crawled into bed with him. Three hours later this repeated, and a third time an hour after that. At four-thirty I gave him his morning Keppra hoping to avoid more fits, but the strategy didn't work and at five o'clock he had the worst focal seizure yet. As I was reaching to turn on the light, Calvin, in the middle of the seizure, began to sit up, put his hand on the side of the bed, slipped and fell out. I halfway caught him, softening his fall but not before his lip caught the sharp corner of the wooden step stool. Michael helped me pick him up and put him onto the changing table where I syringed in his morning cannabis oil, noting a lip that was bleeding and beginning to swell. The seizure began to worsen. His tremors became so violent he looked as if he were a rag doll being shaken by an invisible giant. Something akin to fear filled his eyes as he kicked the arm of the lamp clamped to the end of his changing table. I put my arms around his neck and held him closely until his trembling ebbed then quit.

When it was over, I crawled back into bed with him, lamenting so many seizures amid what had been shaping up to be another good month. Stroking Calvin's face in search of possible fever, my thoughts drifted to the little girl so much like Calvin who died last week from likely complications of the coronavirus. Her name was Charlotte Figi. She was thirteen years old and, without knowing it, had become the face of CBD oil as therapy for epilepsy. Her mother, Paige, had been my mentor of sorts—one of only two parents I knew of who were treating their children's seizures with cannabis. She had suggested different strains of the herb with which I could make my own oil (this was years before it could be ordered online and shipped) and she walked me through how to safely wean Calvin's benzodiazepine. As I embraced my son, I wondered what this dutiful and loving mother, this pioneer and champion for so many, was feeling. I wondered when she might begin to feel relief from the loss of such an extraordinary child who filled so much space with her brightness. I wondered if she felt any modicum of solace in knowing that the invisible giant which is epilepsy no longer haunts and harms her daughter. I wondered if, one way or another, Calvin and I will ever feel that same peace.

Photo by Michael Kolster

dear students

The field behind our home belongs to Bowdoin College. On its eastern edge sits a small dorm which used to be a retirement home. In the center of the field is a picturesque, one-room schoolhouse painted all white and raised up on cinderblocks. It has been vacant for decades and now serves as a toolshed of sorts. Every year from August to May, we watch students come and go from classroom to dining hall, to dorm. In the spring they play frisbee in the back field, or lay on blankets in the sun and study. On weekend nights they walk in groups to and from parties. In the spring and autumn, I wave at them when I'm watering the garden as they stroll past. I learn to recognize and get to know some of them. I come to love others.

A couple of nights ago we got the news that the college students will not be returning to school after spring break because of the coronovirus. Their belongings will be put in storage or sent back to them at home, wherever that is. They'll spend the break with their families—at least those who have families—and some of them will come back to collect their things in a few weeks. Those who cannot return to their homes due to hot spots of coronovirus, like Italy, are allowed to stay on campus where they'll be mostly alone, though fed and supported. Classes will resume online somehow.

The absence of close to two-thousand students in this fairly small town is already palpable, and will be for some time to come. We won't see them at local establishments. We won't pass them walking to athletic practice, won't hear them laughing and cheering when the weather warms, may not enjoy seeing them in them dressed in their spring best and caps and gowns for graduation. Without them, ours will feel a bit like a ghost town. My heart already longs for them. Because of Calvin's disabilities, I grieve the fact that he'll never go to college. Instead, and though it's bittersweet, though mostly sweet, I imagine him in some of them.

At then end of every semester Michael invites his students over for dinner. It has been a tradition since he began teaching photography here twenty years ago. At those gatherings I look forward to communing with the students. Some of them I recognize from previous dinners here, their interest in photography as a means of looking at the world and themselves differently—as taught so masterfully by my husband—inspiring them to take advanced classes. Every semester there are a few who take the time to visit with me and to ask about Calvin. Some of them have made dinner for me and Michael at their apartments. Others invite themselves over here. Some have joined us for Thanksgiving. One dear has let me crash for a weekend at his family's home in Manhattan and has fed me at their restaurant. More than a handful follow my blog, for which I am most grateful. A few keep in touch after graduating by writing, calling and visiting. Some my heart has silently adopted. As if a child or brother of mine who lived with us for a stint or two, one former student's premature death I will mourn forever, just as memories of him I'll savor as life gifts. I don't remember all of their names, but some of my favorites come to mind—Arnd, Ivano, Nick, Emma, Hector, Katie, Ouda, James, Aspen, Moira, Micah, Raisa, Margot, Ahmad, Seth, Emily, Henry, Jude, Samantha, Hassan, Macy, Daniel, Victoria, Pawat, Ben, Meghan, Jean-Paul, Octavio, Drew, Blanche, Salam, Maina, Brennan, Theo, Garrett, Izzy, Darius, Trevor, J.P., Alice, Nevan, Preeti, Colin, Nate, Niles. We miss seeing all of them—all of you. I hope I didn't miss anyone.

Hopefully, sooner rather than later, we'll get on top of this coronovirus and limit its spread. The Occupant and his administration did not get off to a very good start, so its likely to get far worse before it gets better. Michael and I fear what it might mean for classes next September. I hurt for the students, especially those meant to graduate this May. But these Bowdoin College "kids" are remarkable and no doubt resilient. Others like them—so hopeful, curious, talented, generous, thoughtful, industrious—I rarely encounter.

Dear Students, call if you want. Stop by anytime, unannounced even. Try not to be strangers. We are here for you if you need. You are on our minds and in our hearts. Please know that we love and miss you.

May 2015

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.

what grief looks like

Unless there's rain, dreary days can make me grieve. Gray skies end on end tend to put the glum on me. Damp air chills my bones. Any attempts to walk with spring and purpose are hobbled by icy sidewalks.

These mid-winter doldrums make it all too easy for me to feel deeply some transient despair. Stuck inside, The Turkey is up to his usual antics—manic outbursts, intense, erratic and aimless behavior. He can do a good job of driving me absolutely batty. Hard to concentrate. Impossible to relax. Difficult to get anything done. Despair about how he's turning out feels inescapable. Baseless guilt and gnawing worry shadow glimmers of what might be considered joy.

We take Calvin to the coffee shop and the grocery store when, in winter, there are few other places for him to walk, and roughly zero other activities that he can do—we can't play in the snow, we can't take him skiing or skating, we can't bring him to the movies or for walks in the woods. I watch him limp across the street with his father, his gangly legs stiff and crooked, his feet turning awkwardly inward, one arm circling above his head as if he were riding a bucking bronco. Someone once said my boy walks like an astronaut. It wasn't meant as a compliment. I ask myself, when did what was already wrong with him get worse (in this case, his walking)?

When, rarely, Calvin looks me in the eyes without his glasses, I can sometimes see glimpses of a normal boy—the one he might have been if not for any number of things which we can't make right. But when I pull back and away I see one eye turning in, I see him drool, see him shriek, stomp, bite, bang, careen, drop, flail, wander, perseverate, seize. I see a face and body so handsome, mild and familiar and yet so very foreign and bizarre to me. And, I see my own grief. I wish he could talk to me. Eat with a spoon. Dance. Run. Play with friends. Watch videos. Draw. Sing. Get along on his own.

On a beach walk last autumn I remember musing on what grief looks like. I decided then that grief looks like the curly sprig of a young widow's mane in the wind. Grief looks like a slate-blue day in winter. It looks like khaki pools of water filling footprints left in sand. Grief looks like a messed-up sonogram. A withered rhododendron. A face rendered unrecognizable by sleep deprivation, stress, disappointment and age. Grief looks like a loved one being gradually defeated by cancer. A gorgeous bird found dead on the sidewalk. A mother lost to dementia. A desolate street in an ice storm. A child in mid-seizure. A helpless parent. An empty seat at the table.

But grief also looks like a prison cell. A hungry child. A genocide. A war unending. Raging wildfires. Melting icecaps. Suicide. Poverty. Famine. Abuse. Oppression.

And as the sun briefly climbs out from behind the clouds and warms my thighs this morning, I think to myself, perhaps we have it easy.

grief and loss, gratitude and love

As I filled out the lengthy adaptive skills' assessment, it was hard not to tumble into despair, clear that my son, who entered high school this year, cannot perform the simplest tasks that most infants and toddlers can do. When answering in the negative to five consecutive questions regarding various abilities, the instructions prompted me to skip forward to each subsequent section. The survey, which was supposed to take about ninety minutes to complete, took me no more than a quarter hour.

My fifteen-year-old cannot feed himself with a spoon. He can't dress himself, bathe himself, wash his hands, brush his hair. He can't put on his shoes, much less tie them. He can't grasp a marker or crayon to scrawl. He can't catch an object or give me one when asked to. He can't match shapes or colors, can't build blocks, can't speak any words. He can't run, can't play peekaboo, isn't toilet trained, can't open most doors. He can't get into or out of his bed on his own or pull up his duvet when he gets uncovered.

This sweet, handsome child of mine, though loved beyond measure, is a daily reminder of the grief I felt for years, beginning just before his birth when we first learned something was terribly wrong with him, and the loss I've felt ever since. Though he is alive and in ways vibrant, plus cute, loving and affectionate, he will never bring us the kinds of joys we thought parenthood had in store. To add insult to injury, we won't experience the bonus of being grandparents either.

From one perspective, having a child like Calvin represents to me an immeasurable loss, and at times I wince hearing and seeing the myriad of activities in which other kids and their parents regularly delight. But perhaps some of the joys that accompany a child's mastery in sports or academics or art or judgement or even virtue are in ways narcissistic ones and, perhaps, as a friend related after having read my post principles, those kinds of inclinations may not be ones parents are necessarily or ultimately in control of or responsible for.

Having said that, I still grieve the loss of a child who is still alive, in that my child is not healthy or very able to engage in most activities. However, I feel utterly grateful for what Calvin gives me. He still wants to be held like a baby. He sits in our laps and smiles when we lavish him with kisses and tickles. He chirps and coos at night when I reposition and cover him. On most days he greets me with a big grin when I help him get off the bus. He holds my hand in the grocer, making a beeline to the meat-department cases (his preferred place to camp out in the store) and smiles broadly when I hug him and say, "this is your favorite place, isn't it?" and then wipe the drool from his chin.

What's more, I feel abundant gratitude for the things that being Calvin's parent has brought to us—new and interesting friends, knowledge of a broader world, deeper self-reflection, insight, compassion, courage and empathy, profound feelings of despair and happiness (yes, we embrace both), and rare, intense experiences. As a result, I'm thankfully a different person from the one I used to be—I challenge authority instead of bowing to it, I question everything I used to take at face value, I'm more forgiving of myself and others, I'm more forthright and assertive and, I hope, more accepting of others and of what I can't control, and I'm not bothered if, in my advocacy for Calvin, some people don't like me.

And so though Calvin will likely remain much the way he was when he was a toddler, and though knowing that will sometimes get me feeling down, I feel fortunate to have this extraordinary boy as my son. He's one in a million, to be sure. A child to be celebrated and loved.

game changers good and bad

coming of age in san francisco and all i left behind there. michael. maine. marriage. devastating sonograms. hospitals. emergency cesarean. calvin. essential and unnecessary intubations. grief. relentless seizures, including this morning's, the forty-five- and twenty-minute ones. antiepileptic drugs and their side effects. benzodiazepines and their heinous withdrawal (calvin). loss. acute and chronic sleep deprivation (mine). diapers that fit (calvin). honesty. turning off the bed-stand baby monitor. tenure. finding a voice. partner doctors. conceited ones. despair. writing daily. palmetto harmony CBD oil. mothers and fathers of other kids like ours. curaleaf bud and homemade THCA cannabis oil. kick-ass nurses. washable bed pads. angst. the love of a child. onesies. attentive, understanding, open, reliable, responsible school staff. sabbatical. smellie the wackadoodle. the kindness of strangers. gratitude. less medicine rather than more. tenderness. slow cookers. slow-cooker chef-hubby. every single dinner he fixes. state medicaid. the ease of small towns. patience. good cries. walks on the beach on days like the autumnal equinox.

i can't breathe

Summer 2014

The evening was blazing hot. I was in the middle of mixing myself a bourbon with ginger beer on ice while Michael busied himself cooking our dinner. Calvin was screeching and spinning in his johnny-jump-up. He’d had an off day, whining a lot at who knows what. When I turned to check on him I saw that he was jackknifed in his jumper, his contorted limbs rhythmically pulsing.

“Oh no!” I cried, as Michael and I ran to his side and began prying his stiff body from the jumper, the crotch of which was wedged tightly between his rigid legs.

I had a hard time telling if or when the seizure was over, except for that he had begun breathing again. I gave him several drops of cannabis oil since, even though the color in his face had returned, he continued to twitch and flinch like a tortured bug. After a few minutes the spasms had subsided and he fell asleep on the couch.

That same summer, a Black man named Eric Garner and a Black man named Michael Brown also stopped breathing.

The seizures continue to batter my son every three to nine days, or so, though now they occur almost exclusively in the middle of the night.

Epilepsy is relentless. The seizures and the pharmaceutical drugs used to treat them rob our children of meeting their full potential, of living life to its fullest and often make them feel horrible. It pains me to see Calvin suffer, particularly when there seems to be nothing I can do. Try as I may, the seizures continue their steady assault on our fifteen-year-old son's brain and body. Our only hope in stopping the battery, it seems, is to continue giving Calvin an herb—cannabis—which is illegal at the federal level. In doing so we are essentially breaking the law. Luckily, I am insulated by a state law which sanctions the use of medical marijuana ... plus the fact that I am white.

Perhaps experiencing the injustice—the plague—of epilepsy is partly why I empathize so deeply with the family members of the unarmed black children and adults being gunned down at an alarming rate by white police officers and bigots like George Zimmerman. Lately, when I watch Calvin in the grip of a seizure, watch him convulse, watch his skin and lips blanch, his eyes sometimes rolling back or vacant and at others full of fear, I can't help but think about the scores of mostly black victims that continue to be sprayed with bullets, cuffed, punched, tasered, gassed, pepper-sprayed and choked to death by white cops. How did these fellow humans feel during their assaults? How do their loved ones feel when they see the distressing videos and hear their beloved's last words:

it's not real. i don't have a gun! stop shooting! officers, why do you have your guns out? please don't let me die! what are you following me for? mom, i'm going to college. why did you shoot me? i love you too. i can't breath!

Some of you might wonder why I continue to write about racism in a blog largely dedicated to motherhood, epilepsy and disability. Some of you might be fatigued by the rash of stories in the news and peeved by the talk of racism, by the inconvenience and violence of protests, by the lingering frustration and fury over the grand jury failures to indict the White police officers in the Michael Brown and Eric Garner killings, uncomfortable because of the Facebook posts condemning racism, police brutality, riot gear, racial profiling and the videos showing police assaults. Maybe you're sick of it all. Maybe you wonder why I continue to fuss about it. I'd say those are White-privilege problems, and I'll tell you why: Because as someone who feels deep despair, anger and hopelessness seeing my child pummeled by relentless seizures, seeing him stop breathing for minutes at a time, seeing his progress choked by vicious drugs and to be always fearful of the next attack thinking it might be his last, I shudder to imagine what it must feel like to be a Person of Color today and to suffer under a system built to oppress them, to mother a child who will no doubt at some point in his lifetime be wrongly profiled, targeted, pulled over, frisked, suspected, feared, questioned, blamed, arrested, charged, beaten, incarcerated or murdered by White law enforcement officers in a White criminal justice system, to live in a country where most White people deny that racism exists or is at the root of these kinds of wrongdoings. I write about it because it is wrong and pervasive and I love and understand my Black and Brown friends, and it is a problem that is not simply going to disappear until White people start to acknowledge there is a problem, until, perhaps, White people start to feel uncomfortable, which is little to ask considering what Black people have had to endure in this nation for four-hundred years.

The night after the Grand Jury declined to indict the White police officer who put Eric Garner in a choke hold that lead to his death, in the wake of Calvin's seizures, I laid awake lamenting the outcome and the plight of so many others and I thought about my fortune: My boy is alive. I live a life of privilege in a nice home in a safe community with a husband who has a good, steady job. We've got plenty of food, a comfortable, reliable car, good health care and money to spend—and I am White, which is not to say I am proud to be White. It's to say I can go to our local cannabis dispensary and procure two ounces of the best bud which nearly fills a large mason jar. I can transport it home in its white paper bag never giving it a second thought if I get pulled over for a traffic violation. At home, I can make it into an oil which I give to my son to lessen his seizures. I can tell friends about it. I can blog about it. I can feel relatively sure that I won't be arrested for possession and put in jail or have my son taken from me by Child Protective Services.

In a different world, one in which I were Black and male, would I make it past security even with my medical marijuana cards on me? Would someone call the cops because I looked suspicious since I was wearing a hoodie and I had my hands in my pockets? Would they believe I was buying the cannabis for my son's epilepsy? On the way home, would I be pulled over for, as some say, driving while Black? Would I be harassed? Would I, in my legitimate expression of anger and frustration over being questioned and doubted by the cops, be seen as belligerent, be cited, be assaulted, be put in a chokehold, be arrested, be thrown in jail? Would they shoot me while I reached into my purse to get my son's medical marijuana card? Would my last words be, "I can't breathe"?