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.



I don't often write about Smellie—aka Nellie, Smellers, Killer—beyond mentioning that I take her for long walks at the college athletic fields near our home. But I really should gas on about her more than I do. She brings us much needed joy and levity and, like Calvin, loves us unconditionally, something most of us in this world could use more.

Smellie, who doubles as a Muppet, makes us laugh. When she runs, her ears flop up and down like a bird taking flight. She resembles a lion when she stalks certain prey. She loves to be underfoot, insisting on forever positioning her head beneath our hands in order to be pet, and loiters anywhere that bits of food might drop. With her muzzle in our laps, she pokes our arms like a dolphin in attempts to be caressed, and nearly crawls out of her skin when we stop. With huge brown eyes that kind of remind me of my mother's, she gazes at me like a daughter.

Our pooch, a seventy-plus pound eight-year-old, is ridiculously soft, fluffy and adorable. She isn't much interested in other dogs and is indifferent to strangers when sniffing for scraps of food or licking up vomit left by last night's drunken students. She rolls in bird shit, eats deer scat, and pounces in the muddiest puddles. Once, she devoured a baby bird after dislodging it from its nest. Another time she caught a chipmunk, and just once, a squirrel, violently shaking them until their necks snapped, then dropping them to the ground where their lifeless bodies unfurled (sigh).

As for how Calvin and Smellie get along, well, they mostly ignore each other, neither getting from the other exactly what they want. Calvin doesn't feed Smellie save the crumbs that inevitably drop from his place at the table, and he doesn't touch her unless she is sitting next to him in the car. Smellie doesn't give him kisses or want him to pet her. She steers clear of his path rather than get trampled. Each of them would probably prefer our undivided attention as only children.

Mostly, Smellie's a wonderful companion who gets me outside for exercise come rain or come sub-freezing temps, snow and ice and wind when I'd otherwise be hunkering down indoors. When we play hide and seek, she finds me every time. She follows me everywhere I go. She's gentle, loyal, sweet, and attentive. She mostly comes when she's called, and never wanders, even when alone in our unfenced yard.

We love you, Smellie. How lucky we are to have found you when we did. Please stick around a bit longer.


dragon moms

We hear our children shriek and see them seize. We hold them in their suffering, dab lavender on their wrists and feet. We dread and loathe their cries and moans, regret their frequent misery.

We lug their gangly, growing bodies, change their dirty diapers, wipe and salve their seats. As if infants, we watch them in their slumber. We lay our palms against their chests to feel them breathe. We bathe and dry and dress their fragile, flailing frames. Lamentably, we feed them endless medicines. Readily, we stroke and kiss their cheeks.

We cut their food into bite-sized bits and dole it out piece by piece. We feed them by the spoonful though they're toddlers, tweens and teens. We wash their hair, wipe their chins, brush their teeth. We thwart their falls and hold their hands to keep them on their feet. They may be always in our keep.

These kids of ours have made us into Dragon Moms, in great part because they cannot speak. We become their voice, translate their sounds and moods and movements, foresee and understand their wants and needs. On their behalf we challenge, question, crusade, condemn, critique. Protect their vulnerability. Despite our candor, others still neglect our pleas. We are sometimes seen as monsters—feared, maligned, too often misconceived. No doubt to some we're nuisances, hysterics, freaks. We're merely fierce champions of our uncommon offspring. Come walk in our shoes. Please see our rocky path. Please feel our aching feet.

We Dragon Moms—though not our wish—a rare, formidable breed.

Photo by Michael Kolster


on survival

On Saturday, I read an op-ed by a woman who had a third-trimester abortion. So many of the details she shared reminded me of my own pregnancy with Calvin—the fetal MRI, the countless ultrasounds, the wretched diagnosis, the empty spaces where brain matter was supposed to have formed but didn't. Just as the author experienced, a neurologist explained to me and Michael that Calvin would likely face developmental delays, might not crawl, walk or talk. What the doctor failed to mention, however, was that Calvin might be prone to having seizures.

I ruminated on the piece all weekend, even mentioning it to someone close to me. She asked me tenderly if, when I first knew of Calvin's brain abnormality, I ever considered having an abortion. She asked me, had I known of Calvin's troubles earlier in my pregnancy, if I would have had an abortion. She asked me, considering his seizures, insurmountable challenges and suffering, if I ever wished he hadn't survived. 

I did not consider having an abortion when I learned of Calvin's brain anomaly; my pregnancy was thirty-two weeks along. The thought never entered my mind, and no physician broached the topic. Had I known about Calvin's brain malformation earlier in my pregnancy, would I have had an abortion? I can't say for sure. Probably not. There were too many questions left unanswered for this optimist. As for my friend's third question about Calvin's survival, for weeks our boy struggled for his life. We were always pulling for him. He's here today. We love him. He's changed us in myriad ways. The kid has always been a fighter. Perhaps he teaches us about survival.

Having said that, in my very darkest most sleep-deprived hours, I do think about Calvin's mortality, sometimes even longing for deliverance for our child from his suffering, and from our strenuous, limiting, painful situation. I also worry about what will happen to him if he outlives us. Will people love and care for him? Will they keep him safe from harm? Will they be patient? Kind? Attentive? Tender? I think about how much easier life would be without having to take care of him—the constant vigil, the endless dirty diapers, the daily undertakings of a growing child who can do nothing without extraordinary help from others, the sleepless nights, the stress, the worry, the physical and emotional strain so taxing on my person. Then I imagine the enormous void he'd leave in my life, and I wonder, in that case, about my own survival.



If Calvin were a typical child, I'd spend my days instilling him with these principles:

be kind. be honest. be forthright. show interest in those different from yourself. admit fault. be forgiving. be generous. be humble. hold onto hope. be curious. be grateful. be unassuming. take risks. be trusting with a modicum of caution. be accountable. be trustworthy. avoid making assumptions and jumping to conclusions. be courageous. be supportive and advocate for others. be empathetic. challenge authority. be charitable. be loving. celebrate diversity. be fearless. forge new paths. be productive. take time to relax. be patient. be tender.

I am acutely conscious of and lament the fact that Calvin won't grow up to express these principles as a teacher, doctor, philanthropist, climate activist, immigrant advocate, social justice champion, scientist, inventor, artist, author, or parent like many of my friends' children are no doubt considering. But as I write these words, I realize that Calvin in his own way exudes many of these virtues. Maybe they're written into his DNA. Perhaps he has garnered some of these ideals through our parenting, despite the fact I fail miserably at demonstrating some of them.

But Calvin is not a typical child. I like to think of him as extraordiary, a boy who daily shows his penchant for unconditional love, which might be the most-prized principle of them all.

Photo by Michael Kolster


caution to the wind

Despite trepidation, Michael and I made a rare one-night escape upstate with Calvin and Smellie. It had been over seven years since we'd made such a trip, heading north into the lesser-traveled parts of Maine. Though we used to explore a lot when we first moved here, we've done so only a few times since Calvin was born, mostly because of his seizures. Now that he is older and bigger, another concern is finding a safe place for him to sleep without fear of him getting hurt.

The height of leaf-peeping season, the colors in the hills were as dramatic as I think I've ever seen. Photo ops were afforded in every direction. Amid the vivid autumnal colors, placid Mooselookmeguntic Lake shined like molten silver.

Three hours after our departure, we settled into Idle Hour, a rustic lakeside cottage a stone's throw from the Bald Mountain Camps restaurant lounge where we were able to get glasses of bourbon on the rocks, take-away. A young woman seated at the bar surprisingly paid for our drinks, telling me that it was her day's random act of kindness. I'm not sure she realized how much her gesture meant to me.

Back at the cottage, while seated for minutes at a time on a futon and in Michael's lap, or in his johnny-jump-up which Michael rigged to a railing, Calvin passed the time contentedly as a fire in the wood stove crackled and popped. As usual, Smellie didn't venture far, even with the lure of the lake nearly at our feet.

At twilight, we eventually managed to settle Calvin into the middle of a squeaky queen-sized bed, propping a half-dozen heavy pillows around him. Michael began making his magic in the bare-bones kitchen, producing a perfectly cooked herb-encrusted rack of lamb, mashed potatoes sprinkled with some black trumpet mushrooms our friends had home-foraged, plus sautéed skinny asparagus. Thanks to the mild weather, we were able to dine on the porch with the door open, jumping up to check on Calvin every so often. After we finished our meal, an affable bloke from the cabin next door brought us several delicious barbecued scallops wrapped in apple-smoked bacon for dessert. He had visited us earlier and had asked about Calvin, his diagnosis and prognosis. Years ago we might have been incensed at such questions. These days we appreciate any genuine interest in our peculiar boy, even from strangers, particularly considering so many people gawk at or ignore Calvin, and some of my five siblings rarely ask how he is doing.

Before retiring to bed, I took Smellie for a short walk and noted the full moon rising in the mist over our heads. I wondered if Calvin's intermittent shrieking during the drive up had been due to the moon's gravity, wondered, too, if it were an omen. The grand mal at five o'clock the next morning—only four days since the last one—validated my concern. But regardless of Calvin's seizure, which was typical and self-limiting, requiring no emergency care, our adventure proved to us we should throw caution to the wind more often.

click on any photo to enlarge.


reason, purpose, meaning

Thousands of acorns, some crushed. A wad of squashed gum under my sneakered foot. Red leaves with yellow spots and brown edges. A blanket of bronze needles. A pair of broken sunglasses. A dime. An unopened bottle of beer resting on a granite bench. Bird nest with plastic ribbon. Dead squirrel from Nellie's mouth. Plastic bag. Chapstick. Puddles and shards of glass in which I can see myself.

These are the things which, in recent days, have come across my path, or I across theirs; I'm unsure which is the truth. Were they put there for a reason by some divine hand, like some would say is true of everything else? Or did they land there randomly, awaiting others to assign them some purpose or meaning? I'd say the latter.

I remember a conversation with a sibling's in-law long ago. He told me that god put my son Calvin on this earth in his regrettable condition—legally blind, nonverbal, incontinent, cognitively and physically disabled, racked by uncontrolled seizures—so that I could learn something about myself. My face became hot. My heart began to pound. I shut that conversation down as hard as I could:

"I wager you'd feel differently if you had a child like Calvin and saw him suffer every day of his life."

Thankfully, the man shut up.

My son seizes weekly. Yesterday, someone sensitive and with insight, asked me tenderly if his seizures hurt him. I told her they likely did. The spasms cramp and rack his body. His heart races. His breathing shallows. His brain's neurons and his body's muscles march in gruesome unison. He often bites his cheek until it bleeds. I imagine viscous headaches plague him. The other kind of seizures seem to sometimes scare him. I see a petrified expression creep across his face. I've been told by someone with epilepsy that her seizures were terrifying and that she felt as if she were being choked to death. Is this the work of a merciful god? No, it's not. Am I worthy of my son's suffering? No, I'm not.

Yet acorns get eaten by squirrels about to get their necks snapped in the jaws of a dog. Gum gets stuck to sneakers and travels to distant places picking up all kinds of disgusting stuff. Autumn leaves get pressed into scrap books. Pine needles tamp down underfoot. The owners of broken sunglasses are imagined. Coins are passed to endless palms and pockets. Beer gets drunk. Bird nests get burned. Plastic bags go on to hold poopy diapers. Chapstick gets neglected there on the sidewalk. Puddles and shards of glass reflect my tired face, nearby trees and ever-changing skies above me. Some things are given meaning and purpose; others, not. Calvin inspires love and affection, makes those who meet him better people. But he, in his suffering, is no pawn of some so-called merciful god, and yet he gives me purpose, and yet his life is meaningful.


old self, new self

i want my old self back. the optimistic me instead of the worst-case-scenario one i'm sometimes told i've become. i want back the energetic, ambitious, hopeful soul. instead i feel puffy, tired, lost, sometimes melancholy.

i want my old self back, including hair which used to grow thick enough to lie on strong shoulders. i'll take back that hard body, too, the one which my friend robert once said felt like a dolphin, the one with the flat belly which i'd proudly take to the nude beach to go body surfing, the one that could run an eight minute mile with little problem and swim one-hundred yards in less than a minute.

i want my old self back, the one who could sleep in past six or seven, who was untethered, who didn't have a sick kid dictating nearly everything. I want my old self back, at least parts of her, like the part who didn't worry much, who looked at each day as a new opportunity, who dreamt of what life had in store.

but last night and today, i see parts of my new fifty-six-year-old self that i like: the friends i've made, the ones i've kept, the things i've learned about love, politics, race, justice and equality. i get to walk in a magical garden of my making while smelling the fire that's been made for me in our wood stove. i get to write long and hard and daily sometimes. i get to listen to the police and pink floyd and FIP. i get to drink gigondas and côtes du rhône and nibble on goat cheese that is out of this world. i get to gobble huge pieces of a friend's homemade carrot cake with crystalized ginger in its cream cheese frosting alit with silver sparkling candles that resist being blown out. tomorrow i get to celebrate nine years of writing this blog, which has been fulfilling beyond words. i get to look out every single window of this old house and see gorgeous fractals of green and bronze and red nearly every month of the year. i get to hang with my son and husband hugging and smooching. i get to make eggs and toast for my babies. i get to gather with my favorite homies drinking bourbon and wine and eating michael's ridiculously delicious food and laughing until i cry. i get to miss the ones who live out west and south and east. i get to drown myself in art and music and nature when time affords me.

so, on second thought, i guess i don't want my old self back. this one, though not necessarily more traveled mile-wise, is more worldly thanks to calvin and maine and age and the wicked smart people who surround me. and as i listen to pink floyd's sultry us and them, it seems to sway the pines outside my window at twilight, and beat with the pitter patter of calvin's footsteps in the upstairs bedroom with michael.

and so i'll take this new self, this self who still wears ratty jeans and adidas stan smiths, who has beloved in-laws and siblings who love and think of me and calvin and who, despite the clusterfuck that is my life, nevertheless resembles the old self and is still excited and hopeful for the future, whatever it holds.

Photo by Michael Kolster


in case you didn't know

Epilepsy can kill. It kills our children, our parents, our grandparents and our siblings. It is not a benign disorder for which you take a pill and everything is okay.

Epilepsy affects over three million Americans of all ages, as many as 300,000 of whom are children under fifteen.
Epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined.

About 200,000 new cases of epilepsy occur each year and it is estimated that up to 50,000 people will die every year from epilepsy or seizure-related causes, such as drowning. These numbers are nearly identical to breast cancer and yet epilepsy is still an obscure disorder to most people. Epilepsy is stigmatized, misunderstood, feared, overlooked and grossly under-funded.

Those who have epilepsy and are lucky enough to have their seizures controlled by medication suffer drug side effects which can be debilitating and sometimes lethal. Side effects include dizziness, headache, nausea, poor coordination, visual disturbances, trouble with balance and gait, insomnia, drowsiness, confusion, abnormal thinking, fatigue, hyperactivity, agitation, aggression, depression and suicidal ideation, just to name a fraction.

Those who don't benefit from medication risk brain damage, cognitive decline, hospitalization, exorbitant medical bills and sudden death.

Quick facts:

  • Epilepsy affects 65 million people worldwide.
  • Epilepsy affects over three million Americans of all ages, just over one in 100 people. Over 300,000 school children through age 15 have epilepsy. Almost 500 new cases of epilepsy are diagnosed every day in the United States. 
  • In two-thirds of patients diagnosed with epilepsy, the cause is unknown.
  • One in twenty-six Americans will develop epilepsy at some point in their lifetime. 
  • Epilepsy can develop at any age and can be a result of genetics, stroke, head injury, and many other factors.
  • In over thirty percent of patients, seizures cannot be controlled with treatment. Uncontrolled seizures may lead to brain damage and death. Many more have only partial control of their seizures.
  • The severe epilepsy syndromes of childhood can cause developmental delay and brain damage, leading to a lifetime of dependency and continually accruing costs—both medical and societal. 
  • It is estimated that up to 50,000 deaths occur annually in the U.S. from status epilepticus (prolonged seizures), Sudden Unexplained Death in Epilepsy (SUDEP), and other seizure-related causes such as drowning and other accidents. 
  • The mortality rate among people with epilepsy is two to three times higher than the general population, and the risk of sudden death is twenty-four times greater. 
  • Recurring seizures are also a burden for those living with brain tumors and other disorders such as cerebral palsy, intellectual disability, autism, Alzheimer’s disease, stroke, multiple sclerosis, tuberous sclerosis, and a variety of genetic syndromes.
  • There is a strong association between epilepsy and depression: more than one of every three persons with epilepsy will also be affected by depression, and people with a history of depression have a higher risk of developing epilepsy.
  • Historically, epilepsy research has been grossly under-funded. Federal dollars spent on research pale in comparison to those spent on other diseases, many of which affect fewer people than epilepsy.
  • For many soldiers suffering traumatic brain injury on the battlefield, epilepsy will be a long-term consequence. 

David Beauchard, illustration from his graphic novel, Epileptic


overnight in september

Overnight, autumn arrived. The wind chilled, leaves turned rose and yellow, pine needles and temperatures fell. Overnight, Calvin suffered his sixth grand mal of September. In addition to those, he had two focal seizures, totaling eight for the calendar month. And though one seizure is one too many, I'll take eight over August's fifteen.

As I look out over the garden, now dark and damp after last night's rain, I remind myself that Calvin, though he continues to have reliable seizures, rebounds from them so much better. Gone, it seems, are the hours he used to spend perseverating, hyperventilating, fingering, heart racing in the wake of a grand mal. He—we—would often be up for hours unable to settle, and deprived of most precious sleep.

Seated in my creaky wooden chair, I regard the gangly lilac trembling in the wind outside my window and I think of Calvin who has grown so much since June, his limbs long and lean, his gait often unsteady as if he could be toppled by a breeze. Amid these weekly and biweekly seizures, I console myself knowing he is on far less pharmaceutical medication than in recent years, and yet not suffering a huge, sustained uptick in seizures. I just wish we could find a way to lessen them to the level he had (half a dozen to none) when he was on enormous doses of three powerful antiepileptic drugs, without suffering the unbearable behaviors those drugs caused. Even then, his number of seizures reliably crept up each month until we increased his medication, leading to a vicious and unsustainable cycle.

At times, on good days, I see glimmers of a more normal child in the gaze of his sky-blue eyes. I keep hoping, as he gets older and stronger, Calvin might outgrow his plight, just as robust plants are less susceptible to disease. Or perhaps the epilepsy will go dormant, like what happened to some trees as if overnight in September.

Photo by Michael Kolster


what calvin sees

Our fifteen-year-old son, Calvin, has ocular and cerebral visual impairments. His eyeballs are quite elongated, causing his blurred vision, and the lack of white matter in his brain likely may affect the speed and manner in which images received by his retina are sent to his brain. People with 20/200 vision are considered legally blind; Calvin's vision without glasses is 20/1000. With glasses, Calvin's vision is estimated to be somewhere between 20/100 and 20/130, though it is difficult to know for sure.

Yesterday, I saw these gorgeous oil paintings made by Philip Barlow, depicting how visually impaired people might see their surroundings. Of course, I thought about Calvin, and wondered if this is how he sees the world.

click any image to enlarge.
Oil paintings by Philip Barlow


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.


empathy and betterment

Though the grass is green, this dry spell has the shrubs curled up and thirsty. In their withering, I see myself, stressed and brittle. This journey as the mother of a child like Calvin—a teen who is legally blind, incontinent, nonverbal, physically and cognitively impaired, beaten by seizures and the drugs meant to thwart them—is a hard one both physically and emotionally. I'm chronically sleep deprived, burdened with worry, at times gripped by fear, anxiety and the shadow of devastation and despair. I wish I could somehow flee this reality. My mind is constantly buzzing with dour, unanswerable questions:

when will Calvin's next seizure be? will he choke on a piece of food? will he trip over a chair, run into a wall, fall down the stairs? do his bones ache from growing so fast? will he ever be able to tell us yes and no? will his various caregivers love him, keep him safe from harm? will he get good therapy at school? will he suffer another pain episode? will he ever be calm again? will he outgrow his seizures? will he die from one?

It appears that these burdens and worries most people don't fully understand. I see evidence in the scowls and puzzlement of strangers, in the way some folks avert their eyes when passing us, in the ways we have been dismissed or patronized by smug doctors, hospital nurses, and a handful of school employees over the years. I've little doubt that in my assertive, hypervigilant, helicopter mama-ness, I have haters and eye-rollers. There are those who don't take me seriously, think I'm oversensitive, inflexible, overbearing, unhinged. There are those who run when they see me coming, or who regularly assume the conspicuous and irksome cover-your-ass posture and pose. I wish all of them could walk in my shoes.

As is true with most of this nation's disenfranchised, misunderstood communities—the Disabled, People of Color, LGBTQI people, Muslims, asylum seekers, immigrants—Calvin and I are sometimes regarded with caution, mistrust and fearfulness, even perhaps contempt. I attribute this mistreatment to ignorance and a resulting empathy gap, an inability by some to more fully understand the struggles those on the margins of majority straight-White-Christian-able-bodied society endure, though all it really takes is openness and humility, to listen well and put oneself in other's shoes. But perhaps it's easier to avoid doing that, to stop short of admitting privilege, and less upsetting to avoid acknowledging ugly truths. But denial and indifference to the hardships of others gets us nowhere—as individuals, as communities, as a nation—on the path to betterment.

Wednesday morning, over coffee and a tasty blueberry scone at our favorite Dog Bar Jim cafe, a friend and I discussed the wave of asylum seekers from Angola and The Democratic Republic of the Congo whom our town has recently aided and absorbed. She recounted a conversation she'd had about the African soccer players who have joined the high school team, some who are quite good. Apparently, some parents are bemoaning the amount of playtime the asylum-seekers are getting (I can't help but wonder if their reaction would be different if the students were from Italy or England). When my friend's own soccer-playing son questioned it, she offered him an analogy: if he were to transfer to a new school with weaker players, he might get lots of playtime, too. A thoughtful kid, he understood.

My friend and I went on to discuss how helping asylum seekers is not the zero-sum game some purport is true. For example, we can also help our homeless neighbors and veterans, and we do. Furthermore, asylum seekers, once they're cleared to work, often fill the grueling, dangerous, tedious jobs many Americans don't want—harvesting crops, packing meat, caring for the elderly in nursing homes. My friend told me of a refugee physician who is driving a taxi just to make ends meet.

After our coffee date, I imagined the asylum seekers playing soccer with my friends' kids—one of a million things my son will never be able to do. Some of them speak four or five languages, having picked up Spanish and English on their journey north from Brazil. Many, if not most, traveled thousands of miles through South and Central America having escaped life-threatening circumstances back home. On their trek they survived beatings, muggings, hunger, thirst, and five months of travel on foot, at times through dense forests dark as night, stepping over the dead bodies of other refugees who would not make it to the USA. The ones who made it here are strong, tenacious survivors who likely have what it takes to make the best Americans. And yet, because of fearmongering and ignorance, they are sometimes met with animus and contempt, perhaps even envy and hatred. With this thought I imagine Calvin and the folks who seem to see him—without understanding his purity, love and struggle—as a freak, aversion or contagion.

I wonder what would happen if asylum seekers had the chance to tell their stories. Who would listen? Who would understand? Will these refugees, like Calvin, inspire some of us to become better people, better members of society? Will some of them give rise to other, better soccer players? Who, upon hearing their stories, would feel empathy and embrace them? And who would stand their ground, unmoved?

Carolyn Cole / Los Angeles Times



This morning at three-forty-five I crawled in bed with our son Calvin for the umpteenth time in his fifteen years on this earth. He had suffered a tonic-clonic (grand mal), and when it was over I slipped into the small space between him and the back panel of his safety bed. There we spooned, my hand resting on his ribs feeling the rise and fall of his chest, his knees tucked up in fetal position. I stay awake as long as I can to ensure he doesn't stop breathing and die from SUDEP (sudden unexplained death in epilepsy). His risk of dying from SUDEP is greater than 1 in 1000 in any given year because of the nature of his seizures (uncontrolled tonic-clonic) and cognitive impairment.

Our first time spooning was when he was breech in utero, before I'd ever met him, before the dreadful sonogram revealing his brain's enlarged lateral ventricles and substantial lack of white matter, before the emergency cesarean, before the subsequent seven-week stay in the hospital. I'd rest my palm on my gravid belly on top of a bulge I was certain was his little head. Since then, when he sleeps with us, he loves to touch and press heads, and will pull us toward him, his hands around our necks.

When he was an infant and toddler, we'd regularly nap together. He'd curl up into me like a little bird in a nest. He used to be so calm, but since having to take antiepileptic medicines—particularly benzodiazepines—his body has a hard time quieting; he is so very restless. Still, at times, usually when he is sick, he settles enough to nap next to me or in my lap.

I've spooned with him in the hospital after ten-, twenty-, forty-five-minute seizures. I've spooned with him on the floor, on the couch, in his and our bed. Tiny for his age, he's getting bigger fast, but he still loves sitting in our laps for a spell, embracing us, clinging to us in bed.




Again, I lie awake hours before daybreak. The dark of night seems to magnify my angst. When for various reason I can't sleep, I worry about whether Calvin will seize. Under the covers, I flinch when Nellie yelps in her sleep. I fret about the list of things I need to get done that I don't seem to have the time to do, the things that have piled up during the five-and-a-half weeks that Calvin didn't go to school—sweeping, mopping, dusting (what's that?), writing, reading, researching, filing, calling. I lie in bed, my mind racing, pondering the troubles of the world: war, famine, genocide, waste, poverty, pollution, misogyny, racism, corruption. I think of the human impact on climate and the havoc it is wreaking on our gorgeous Earth. I consider refugees desperate to find better lives for themselves, whom the people of our town and nearby ones have graciously—and some begrudgingly—received.

The other night, after I heard the rain begin to fall, I laid there on the brink of exhaustion and yet buzzing, lamenting the plastic microbeads, bags and bottles choking the ocean, the single-use plastic caps and containers washing up on beaches, the straws and swizzlers and six-pack holders, the syringes, balloons and latex gloves—you name it—that sacred sea life is ingesting and strangling on as we dream. I pondered the tons of toxic materials being released into our rivers, air and seas, and the sleazy politicians who are making that more possible. I grieve the burning of the Amazonian rain forest, the flushing out of its creatures and native peoples. I consider the rabid appetite of greed.

Yes, I lay awake in a warm bed in an ample house having filled my belly with delicious food my husband cooked, thinking about Yemenee people starving to death, and Rohinga refugees being forced back to their tormentors, and hurricane victims having just lost loved ones, homes and belongings. I consider how effing lucky I am, and wish I had the means, like a handful do, to fund everything. I lament that, in this nation of abundance, our fellow humans still live under cardboard boxes or on cold sidewalks while billionaires and certain politicians continue to enrich themselves at the expense and exploitation of everyone else.

While scrolling through my photographs yesterday, feeling weary of the world and of all-things-Calvin, I came across some I'd taken at last year's Bowdoin student art show. The small, framed piece that hung on the far wall of a room where my husband taught a class called Art and Time, was titled, Receipt for a Sunday and the Things Carried There, by a talented and ambitious student, Blanche Froelich, class of 2019. Rereading it reminded me to be grateful, humble, thoughtful, and generous to others; none of us live life without our own struggles, big and small. And the night is not the only time we feel unease.

Detail, Receipt for a Sunday and the Things Carried There, by Blanche Froelich


regarding calvin

As my boy sleeps in my lap, in his bed, in our bed, on the couch, I hear the birds chirping outside. I feel the rumble of passing motorcycles and cars, see students strolling down the sidewalk. A week of school has come and gone, yet my boy remains sick at home. In my arms, we rest and pass the hours.

Yesterday, while on the couch together, Calvin looked right at me. This gift is rarely granted, and I found myself luxuriating in his pool-blue and yellow-flecked eyes. I did not take his gaze for granted; it's so rare that I see him look at me—almost never, it seems. But sometimes, when I put my face smack-dab in front of his, he does regard me. As a baby, if memory serves, he used to do it more often. I remember the day he got his glasses when he was a tiny eleven-month-old. It was like I could see the world flooding into his eyes—eyes which before had likely seen only shapes and colors.

Now, for whatever reason (autism, visual fields, seizures, drug side effects) Calvin usually disregards or looks at me peripherally. His eyes jerk and rove from his nystagmus. One eye often turns in, a phenomenon that, vexingly, his former ophthalmologist regularly denied, explaining it away as an optical illusion. No matter how confident I was of my son's eye-drifting or tugging-in (I'm the resident expert in observing Calvin closely) the doctor still rebuffed me.

Tomorrow, hopefully, Calvin will attend his first day of high school. He'll be greeted, fed, diapered, and escorted by a teacher and a staff who have rarely, if ever, worked closely with him. My anxiety is high, afraid he'll choke on food he doesn't chew well, fearful he'll fall off balance on the stairs or run into a door jam like he did this morning. Michael and I understand that Calvin, due to his poor vision (which glasses don't fully correct), his lack of coordination, and caregiver overconfidence or undervigilance, is a walking disaster, an accident waiting to happen. My hope is that the folks at school will regard him closely, will see what he sees and what he doesn't.

Calvin's first day with glasses when he was eleven months old.



The sun, readying to set above smoky embers, kicks up a cool breeze. Gusts skip across the fields, flipping skirts like flags and ballooning blouses in a kaleidoscope of oranges, blues, reds and ochres. Ties fly sideways. Hats tumble off backwards. The diners, this year's college students, are dressed in their late-summer best—vibrant frocks and jumpers, slim sport jackets and slacks, suede loafers and strappy sandals. They arrive in clusters on the heels of convocation. Some run and hug each other. One squeals and jumps piggy-back onto another. Others stroll hand in hand, in pairs and trios. I feel their joy quite palpably, and it makes me smile ... and wither.

As I lead Nellie away from the flock, shielding my gaze from the sun's glare and from the unabashed gleam of hardy kids in their teens and twenties, I bow my head and cry. I weep lamenting my son Calvin's misfortune and his inability to one day experience such pomp and circumstance, such brotherhood and sisterhood, such revelry. I pity myself, too, lamenting my first few years of college which were so very different from this—the enormity of the university, the lack of good council, my disconnectedness, my disappointing swimming career, my disorientation in a sea of forty-thousand students, my lack of forming lasting deep connections.

I watch as these eighteen-hundred youths commune at rows of tables amid a sunny field, some of the best and brightest, these lithe and curvy, stout and muscly, black, brown, pale and white bodies speaking with various accents from around the nation and world. I want so much for things to be different. I want Calvin to suddenly speak and read and write and philosophize. I want him to look up into the night sky and wonder, want him to gaze across a sea, yearning for distant places to visit. I want him to hear and speak different languages, take risks, dream. Thinking of all these lost possibilities makes me breathless.

On our way home we walk against what seems like an endless stream of dapper students. Seeing them, I waffle between delight and despair. Out of the strolling throng pop two familiar faces, J.P. and Nate, two of Michael's former photography students. They each embrace me, smiling, before disappearing back into the crowd. For a moment I glow, knowing were it not for Michael's job as professor I'd never have met these worldly, kind and gifted souls. Then a young man walks past who reminds me of our friend-brother-son who took his life this time last year, and the one who lives nearby and yet has vanished, and I wonder where the others will go. And as I unleash Nellie to run the last few yards toward home—her understanding and ability seemingly far surpassing Calvin's—I remember his limitations and the ones which tether us to him so tightly, and my breath is whisked away once more.

Photo by Michael Kolster



On the last night of August, as we sat with new and old friends around a fire in the dark garden, Calvin was burning up in his bed. From the baby monitor in my palm, I heard him rouse. When I went to check on him, his skin felt hot. His thermometer read 102.4 degrees. I stripped him down, gave him an acetaminophen suppository, then, as I brushed my teeth, I quickly went outside to wish our guests goodnight. Soon after, in bed next to him, I felt the embers of Calvin's fever subside over the hours.

I'm grateful that August is behind us, and with it its five grand mals, ten focal seizures, one pain episode—eleven days of this misery in all. Today, I feel autumn, and I wonder what September will bring. Tomorrow, if Calvin is feeling better, he'll be off to the high school to traipse bobble-headed up and down its halls. He'll be mingling with students almost twice his weight and nearly half as much as tall, kids who are light years ahead of him developmentally, kids who can speak and read and reason and judge.

As I listen to the crickets, the early evening sun casting its long shadows on a garden which, due to my inability to control Calvin's condition, I've worked so hard to control, I am cautiously optimistic about the year to come. Calvin will have a new teacher and new ed techs at school. The administration and staff have already gotten off to an impressive start, meeting with me and Michael for over an hour, professionally and compassionately addressing each and every one of our concerns.

Meanwhile, the college students are returning. We see them in the field behind our home, hear their riotous joy through our open windows at all hours. Their presence is bittersweet. While I bask in their youthful glee, their physical and mental prowess ablaze in stark contrast to Calvin's, I am reminded that Calvin will never enjoy the autonomy of cleaving. Michael and I will never savor that chapter of parenthood. Instead, our son will forever exist in our and other caregivers' shade and shelter, much like an infant or toddler, no matter how big he'll grow.

But as I lie with him, his skinny arms around my neck pulling me in, I tell him how sweet and dear he is to me. And like a dark August behind us, I hope one day his epilepsy sunsets, casting only shadows, leaving only traces and faded memories of unpleasant events.


letting it out

My dear friend Elizabeth Aquino, whose adult daughter Sophie has epilepsy, writes the exquisite blog a moon worn as if it were a shell: where parenting, disability, politics and poetry intersect. In 2018, Elizabeth expanded her reach, becoming co-producer of a podcast called, Who Lives Like This?! The Grit and Grace of Caregiving, in which she and her co-host, Jason Lehmbeck, interview caregivers. It's a compelling venture in which Elizabeth and Jason ask thoughtful questions and offer their own insights on caregiving, which are often humorous and sometimes sorrowful and bleak. Last week she and Jason interviewed me about my experience raising Calvin and writing about it. They titled the podcast and corresponding blog, Letting it Out. I hope you'll tune in and share.


landon's gift

Again, our day began at three a.m. with the arrival of another focal seizure, the first of two, this one several minutes long. With the help of some extra homemade THCA cannabis oil, however, Calvin had improved by eleven, and so we set out for the Windsor Fair, a town or two away from the fair we went to a week ago.

Calvin did far better this time, even holding our hands and walking, though wonkily, willingly at times. Throughout the day we zigzagged our way between sheds of lounging cows and goats, cages of enormous sows with their week-old suckling piglets, and a raucous avian barn. All the while Calvin seemed to take it in, gnawing happily on his rubber chew toy and nibbling on snacks I'd cut up for him.

Several times I watched children and adults gawk at Calvin as if he were some freak in a carnival sideshow. When this occurs, as it does anytime we're in public, I feel a mix of sadness and anger. Sometimes I'm moved to act spitefully. I'd like to think they don't mean any harm; maybe it's human nature to rubberneck at a spectacle. Still, I often feel like an alien with my sweet little peculiar Martian, orbiting on the margins of things rather than feeling an integral part of the larger world. 

When we had seen enough of the sights, we stood in line to get an ice cream cone. A handsome, dark-haired boy approached us and asked if Calvin might like to have the stuffed animal he'd won in a midway game. I fumbled to answer, fairly certain that Calvin wouldn't respond to such a toy, his go-to playthings being hard plastic and rubber ones. But I was compelled to accept the boy's kind gesture because I remember well what it was like to be his age.

The boy introduced himself as Landon. I suggested we try handing the stuffed animal to Calvin to see how he'd respond. Landon crouched down closer to Calvin offering him the toy, speaking to him directly and asking if he would like to have it. Immediately, Calvin hugged the larger-than-life emoji and began mouthing it with fervor. We were all amazed and happy when Calvin received the gift so emphatically. 

Landon, who is as sweet a boy as you'll ever meet, and worldly beyond his years, told us he'll soon be thirteen. We greeted his dad and grandfather who were at his side, and as I spoke with Landon, his father told Michael that he had no idea Landon had planned on giving away his prize.

I took a quick picture of our newfound friends before shaking their hands and saying goodbye. After they turned to leave us, I looked up at Michael and noticed that he'd gotten quite choked up. Seeing his emotion, I began to weep openly at Landon's selfless gesture.

Random acts of kindness like these make our world go round. No doubt I'll rest my head on my pillow tonight thinking of Landon and how, if things had turned out differently, maybe Calvin would have become as extraordinarily thoughtful, fearless and empathetic as he.

If you are reading this, Landon, I hope you know how deeply you touched us and how much you made us feel welcome, important, and included, while so many others look at us as if we don't belong. You yourself are the gift you gave to us, one far larger than the sideshow prize that left your arms. How very lucky we are.


hope, dread, want

The day began large. Having been the second one in a row of seven that Calvin didn't wake to a seizure, I felt some semblance of hope. But as the day wore on, hope became dread, and dread became want.

Around noon on Sunday, we made our way north to the Union Fair. The hour-plus drive felt long, winding through Maine's back roads where farmland sprouts double-wides and barns, dilapidated antique stores, tractors, graveyards, and at least one shop devoted to selling guns. I tried to stave off a bit of anxiety amid the unfamiliar surroundings so far from home, tried focusing instead on feeding Calvin and thwarting his incessant attempts to stare at the sun.

It was a hot day to attend a fair, but the cloud cover helped for a spell. A nice lady selling tickets from a kiosk let Calvin in for free after she saw him spastically flailing in the backseat of the car. From the get go, Calvin was stubborn when asked to walk, a repeat of the day before. He'd take a step or two before collapsing in our grasp, getting us nowhere. Thankfully, we brought his stroller.

The highlight of our day's adventure was a ride on the Ferris wheel. This was a first for Calvin, for us as parents, and one I'd dreamt of for years. Calvin wilted in the sun waiting to board, and during the wheel's five revolutions, he didn't seem to register much of anything. He squirmed and squinted exhibiting discomfort. While Michael held him in the shade, I took in a bit of my surrounding world. The sky proved spectacular—a mix of puffy white clouds and wispy ones met the horizon. Compared with the West, this small part of Maine, save some rolling hills, is flat, with nary a vista to take in. In this landscape with its tall white pines and oaks, it's easy to feel stuck. Needless to say, at fifty to one-hundred feet, I ate it up.

Because of Calvin, we cut our fair-time short. The drive south felt more relaxed, any apprehension now behind us. Though we were at the fairgrounds just over an hour, and though it was far from Calvin's best performance, we had, I think, accomplished something, and it felt good to be heading home. On the drive, however, Calvin became increasingly agitated and, at one point, he let out a bizarre screech. I knew this was a bad omen, causing me some dread.

Once home, Michael gave Calvin a bath while I took Nellie on a short walk. When I came back, I heard Calvin upstairs crying as if he were hurt. After his bath, our boy had devolved into what I've previously described as night terrors. Calvin was writhing and crying, stretching and recoiling, shrieking and moaning as if he were being tortured. Michael and I guessed he had a migraine, so I gave him an acetaminophen suppository. Lauren stopped by, came upstairs and gave us some much needed tenderness and moral support. I shared my belief that these episodes are latent benzodiazepine withdrawal side effects. I'd read that Stevie Nicks, having withdrawn from years of prescribed benzodiazepine use had said that her detox felt like somebody had opened up a door and pushed her into hell. This is how Calvin sounded and looked.

After twenty minutes, when the acetaminophen didn't seem to be helping, I gave Calvin his nighttime dose of homemade THCA cannabis oil, except this time I gave it to him rectally. Within five minutes he was sound asleep. Half an hour later he woke up enough for me to give him the rest of his nighttime cannabis oil and his Keppra. He slept peacefully the rest of the night.

Unlike most seizures, rarely do I see with any clarity these pain episodes coming. In the past they've been while he's asleep, leading me to think they are night terrors. Now I know they are not. Regardless, they are dreadful. In the moment, I want for nothing but for Calvin to be at peace, to be set free from the torture and misery consuming him. I want for him to feel serenity, no matter how brief. I want him to feel the calm of looking into a sky with tranquil clouds which touch the horizon. I want him to feel hope, not dread, not want.


riding it out

My eyes are aching in their sockets, this morning being the fifth in a row that Calvin has woken up ungodly early to one or more focal seizures. On Wednesday night, he also suffered a grand mal, so it has not been a good month at all. Did I make a mistake in reducing his nighttime THCA cannabis oil, thinking that the THC in it might be causing his evening grand mal seizures and agitation? Does he need more CBD? Both oils have helped him in the past. Question is, what are their sweet spots? Is less better, or more?

However, since I've made a few changes to his regimen already this month, and since it appears he's been going through a growth spurt, I'm going to try my best to ride out this spate of seizures without changing anything else. I'm going to remember that Calvin is taking WAY less drug than in the past—his only pharmaceutical anticonvulsant is Keppra, which is at its lowest dose in years. His CBD is close to its lowest dose and his THCA is still about half of what he's been on in recent past. My gut tells me to raise it again, so I might do that, but not until after this recent storm calms.

Despite the uptick in seizures, I am still amazed and grateful that Calvin isn't doing worse than he is. Always a tiny child, and having made it onto the growth charts only a few times in his entire life, albeit never past the first percentile, he has grown nearly two inches since April; the top of his head now reaches my chin! My gut tells me puberty and growth, especially spurts like these, could negatively affect his seizure threshold.

So I'll keep riding this thing out, grateful that Calvin is having calm, happy days, though lethargic ones, and I'll hope for better, more seizure-free days to come.

Calvin, still looking like a newborn when he was nine months old.


whatever you are, be a good one

Chronically sleep deprived—in general and of late—and despairing of life's various disappointments, including my son's recent spate of focal seizures, I opened a book that Calvin's school had awarded him for being a so-called honor student.

The small book, Whatever You Are, Be a Good One: 100 inspirational quotations hand lettered by Lisa Congdon, proved therapeutic as I flipped through its pages. Below are some quotes which struck me most, particularly considering the state of things in the nation and in my mind, plus other smaller, albeit troubling, goings-on. I hope you like these and find meaning and solace in their wisdom, as did I. If so, meditate on them:

Three things in human life are important. The first is to be kind. The second is to be kind. And the third is to be kind.
—Henry James

Life appears to me too short to be spent nursing animosity or registering wrongs.
—Charlotte Bronte

Unselfish and noble acts are the most radiant epochs in the biography of souls.
—David Thomas

Nothing in life is to be feared, it is only to be understood.
—Marie Curie

Be curious, not judgmental.
—Walt Whitman

I hold this to be the highest task for a bond between two people: that each protects the solitude of the other.
—Ranier Maria Rilke

Nothing contributes so much to tranquilize the mind as a steady purpose.
—Mary Shelley

I feel safe in the midst of my enemies, for the truth is all powerful and will prevail.
—Sjourner Truth

Hope smiles from the threshold of the year to to come, whispering, "it will be happier ..."
—Alfred Tennyson

Photo by Michael Kolster


when grace goes out the window

Partway through reading my friend Chris Gabbard's recent memoir, A Life Beyond Reason, I came across the word grace, and was emotionally stunned. Chris uses it to describe a commitment he made to raise his son August with as much poise and kindness as he could muster. August, like Calvin, had cerebral palsy and was legally blind, non-verbal and incontinent. Unlike Calvin, his condition was the result of injuries he suffered during a medically negligent and reckless childbirth. Reading the word grace, I felt a deep sense of shame and regret, since too often when caring for Calvin, any semblance of grace I might be able to muster, inevitably goes out the window. And though I can blame any number of reasons for my graceless behavior—sleep deprivation, agitation, resentment, monotony, grief, impatience, anger, frustration—I still feel remorseful of my inability to be wholly graceful when caring for such a pure, affectionate, faultless little kid. 

In the heat and humidity of early evening while strolling alone in the garden yesterday, Michael having gone to Boston for the night, I heard, via the baby monitor slung around my head, Calvin banging the wall behind his bed. I made my way up to his room and was greeted by the stinky news that he had pooped. After unfastening the safety netting and side panel of his bed, I first sniffed his fingers. Yep. He had put his hand down his diaper and into the shit ... again. Exasperated, I grit my teeth. I wiped him up, gave him a new diaper, and spread copious amounts of sanitizer on his hands. All the while, I bitterly and openly lamented the fact that, despite how often this happens and no matter how many ways I try to explain to him why he shouldn't do it, it never seems to sink in. I rubbed his palms and fingers down, cleaning underneath each fingernail with half a dozen baby wipes. I changed his pants and shirt, which were both wet, then put him back into bed. When laying him down, I noticed a brown splotch on his clean sheet and another on the wall above his head. I tried hard to contain my vexation, tried to emulate my friend Chris, and to act with grace. But in my state of cumulative and acute sleep deprivation, plus a certain kind of traumatic stress disorder from fifteen years of rearing a boy with chronic epilepsy who it still a lot like an infant, I lost my head.


I screamed at the sheet, at the walls, at the bed, at myself, at my son. Luckily, Calvin remained visibly unfazed. No doubt, however, with all the windows open, any passersby or neighbors could have heard my ugly distress. The grace I tried to hold in my body's vessel, in my brain and spirit, went right out the window instead.

I apologized to Calvin and to Nellie. I should apologize to the neighbors just in case. I forgave myself for the eruption which came on the heels of a buildup of worry, frustration, pressure and tension. But when I woke up this morning, I was uniquely aware that I hadn't spent the night clenching my teeth.