9.20.2019

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

9.19.2019

spooning

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.

2007

9.14.2019

unease

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

9.09.2019

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.

9.05.2019

breathless

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

9.02.2019

shadowcasting

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.

8.27.2019

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.

8.25.2019

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.

8.19.2019

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.

8.16.2019

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.

8.13.2019

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

8.09.2019

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.

"GODDAMMIT!" 

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.

8.05.2019

the terror of decent people

The wind through the trees speaks to me, each leaf part of a collective voice, each a palm, each a map of sorts to a larger world. These living beings know what to do, know what freedom means. Seeds travel on breezes and in the mouths and bellies of birds. Trees put roots down in fertile soil. Geese and butterflies migrate legions of miles. Seas intermingle. Grasses cross natural, manufactured and imagined divides. Rivers breach levies. Clouds rain down quenching all creatures. Nature knows no boundaries. Why should we?

After Calvin's unexpected grand mal at dinner time Saturday night, after we wiped a stream of blood running down out of his mouth, I sat on a stool next to his bed and watched him breathe. I pondering the state of the nation we're in, where blood is shed in massacres which are happening with increasing frequency. Studying my boy's maturing face, I recalled what Frank Borman, Apollo 8 astronaut, said when feasting his eyes on blue Mother Earth from space:

When you're finally up at the moon looking back on earth, all those differences and nationalistic traits are pretty well going to blend, and you're going to get a concept that maybe this really is one world and why the hell can't we learn to live together like decent people.

—Frank Borman, Apollo 8, December 1968

And then, while bitterly lamenting racist despots and White supremacists and the atrocities they commit, I reflected on what the seventeenth-century Dutch physicist, mathematician and astronomer said:

How vast those Orbs must be, and how inconsiderable this Earth, the Theatre upon which all our mighty Designs, all our Navigations, and all our Wars are transacted, is when compared to them. A very fit consideration, and matter of Reflection, for those Kings and Princes who sacrifice the Lives of so many People, only to flatter their Ambition in being Masters of some pitiful corner of this small Spot.

—Christiaan Huygens, The Immense Distance Between the Sun and the Planets, 1698


And yet, on this small spot of glorious planet we share with nature and the rest of humanity, we have an epidemic of Right Wing, White Supremacist terrorism. It's motivated by the erroneous, bigoted and dangerous notion that ours is a White, Christian nation, and inspired by a reckless president bent on maligning People of Color meant  to rile up his base, pitching one struggling human against another while he tweets indignities from his gilded toilet seat.

I think of how these hateful people speak of and treat others who are their mirror image, save what's in their hearts and the pigment in their skin. I hear and read deplorable rhetoric about refugees spewing from fanatical mouths, words like "alien," "animal," "thug," "infestation"—no way to describe decent, loving, striving human beings. Where has our collective humanity gone? It is being poisoned by a fearmonging "leader," a tyrant, liar and thief who preys upon the ignorance and anxiety of people who feel they need someone else to blame.


How foolish to believe that anyone on this hunk of land, one which was stolen from its natives in a heinous genocide, can somehow feel entitled to decide who has the right to call it home.

Yesterday, I watched a video of a Black American with long dreadlocks being harassed by a White police officer in the front yard of his own home. It was a case of mistaken identity. Watching and listening, I heard the anger in the man's voice and the fear in his wife's. History has proven that any false move by the Black man could've resulted in the cop gunning him down. I've seen so many of these kinds of videos I've lost count—White cops shooting decent Black people. White cops and civilians harassing Black men in cars. Black men on sidewalks. Black men picking up garbage outside of their apartment building. Black boys playing in parks. Black men, women and children going to church, having a bbq, entering their own homes, walking across their college campus, sleeping in their dorm’s common room, waiting for a subway, mowing their lawn, entering their apartment building, going home from a pool party, driving to work, crossing a street, waiting for a friend in a Starbuck’s, shopping at Walmart, walking home.

And if you haven't read or seen James Baldwin's, If Beale Street Could Talk, you should; in its words and scenes, you will feel the terror of decent Back people.

These White Nationalist racists have launched an assault on the rest of America, on decent people's freedom to move and to safely exist in our personal and public spaces. They are driven by the fear of being replaced by people who've born the brunt of centuries of White state-sanctioned slavery, family separation, rape, forced labor, harassment, racial profiling, police violence, arrest, incarceration, exploitation, discrimination, marginalization, segregation, disenfranchisement, and demonization.

But as sure as the trees speak to me through the whisper of wind, as sure as the tides flow and recede, the world is evolving, its natural and imagined borders forever changing. Its people put down roots where the ground is most forgiving. We cross divides in search of liberty. We intermingle like the seas. We suffer and triumph and love and bleed the same. Each of us is a leaf on the same tree. We have room enough to shelter one another, and to let each other breathe.


Carolyn Cole / Los Angeles Times

7.31.2019

again i ask

again i ask, is it the barometric pressure? the oppressive humidity? some kind of virus? the unrelenting heat? is it the new thca cannabis oil, the one i made with indica? is it a post-ictal state that is causing his lethargy?

today my sweet boy is much improved, and so i can feel more sure it's not the cannabis oil that was causing his malaise. he catnapped on and off from morning till eve. woke to a focal seizure at four-thirty today. now is splashing in a tub not unlike pond water quite happily.

as i write, my achy eyes are begging me to get more sleep.


7.29.2019

teeth, minds, hips, cheeks

my teeth don't meet anymore. i can feel it. can no longer chew the skin of fruit and meat as satisfyingly. something about teeth forever shifting forward. molars eroding and gums receding from clenching all these years. i do it mostly when asleep. attempts to calm my jaw have met with some success. still, i can sense the tension in my lips and cheeks.

i see them coming, my son's seizures—a source of some anxiety. the omens are plenty: sun-staring spells. drops to the ground. bad balance. sudden manic tantrums. sour breath. pimply nose and chin and cheeks. fingers snapping madly. his own grinding teeth.

we met a friend wandering in yesterday's heat. he marched right up behind us on the knotty sidewalk, tried passing on the right. one-handed, i wrestled the squirrely stroller. my other hand held nellie's leash. the man's fine hair was tipped with sweat. though his cheeks were flushed, his face was peaked. far from home, he said he'd been running. it was nearly eighty degrees. friends for years, it wasn't clear he recognized me. he spoke a mix of non sequiturs and lucidity. when we reached our house, i offered him a glass of water. he rested on the green couch. calvin hugged him fiercely. when he was quenched we drove him home. a friend was waiting for him anxiously. on hot black asphalt, he waved and thanked us fervently.

while holding calvin in the wake of this morning's seizure, eyes closed, my mother came to me. for years she suffered alzheimer's. we lost her by degrees. my running friend awoke the memory of her. i recalled a photo of her in bed with baby calvin. as a girl i sometimes slept with my mother, my achy growing legs draped over hers, like calvin's slung across my hips.

7.26.2019

stay tuned

Last night at nine Calvin suffered his sixth grand mal seizure in thirty days, eight days since the one before. Michael and I had just crawled into bed, so we got to Calvin just as the seizure began. I saw my boy's face contort in a way that reminded me of one of the images from Pink Floyd's The Wall—his mouth hideously agape with an expression of fear and/or pain.

After the fit, which seemed slightly shorter than most, I fell asleep next to my son. He slept soundly through the night and, thankfully, did not have any more.

This morning, I gave Calvin his first dose of a new homemade THCA oil. Because our local dispensary no longer grows the hybrid strain, Chemdog, which Calvin was taking for over five years, we've had to use whatever high-THCA bud they have on hand. Having switched to a replacement hybrid, one called Mandarin Cookies, I did not notice a remarkable difference in the number or quality of his seizures. This time, since Mandarin Cookies is no longer available, I made a batch of oil using an indica strain called King's Stash. My hope is that the indica will have a more calming effect on my son's behavior and brain. I'll let you know.

In other news, Calvin is having a decent summer. His focal (partial) seizures have remained at just a couple-few the past two months which, since they usually have a tendancy to cluster, keeps his overall monthly seizure numbers in the single digits. We've yet to break a somewhat recent record of six total seizures in a month's time. If Calvin could just go seven or eight days between each seizure, he'd only have four per month. But for now, some of the grand mals are clustering together within days of each other, resulting in a higher number.

Though six or seven seizures a month is nothing close to ideal, I'm grateful that amid a significant growth spurt while having reduced his Keppra, Calvin's total monthly seizures have been relatively low the past couple of months. This reduction, however, is mostly due to a decrease in focal seizures, not a reduction in grand mals ... yet.

Please stay tuned.

7.22.2019

progress

As if overnight, Calvin seems to have mastered the art of getting onto his favorite couch all by himself, snuggling into it for a catnap, and then getting off of it all by himself without falling. This little bit of progress, aided likely by a pretty astounding recent growth spurt, is liberating for me; with each passing month lately, I feel able to loosen my tether to him, if only by feet or degrees.


7.17.2019

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"?


7.16.2019

questions (some rhetorical, others not)

will these early-morning seizures ever stop? will calvin eventually succumb to them? am i slowly going crazy? is my son already insane? when will so much of white america finally confront their ugly racism and bigotry? do i have traumatic stress disorder? has being a helicopter mama ruined me? will my patience ever give way? how can i stand my angry self? will life with calvin ever get better? why did that guy sitting on his porch look away from us when i caught his gaze? will folks ever stop gawking at calvin and me? will my son ever learn how to feed himself? will he ever be potty trained? will he ever be seizure free? when might i get a full night's sleep? am i being selfish? how do i manage living with my son's chronic illness and disability? when will police ever stop mounting violence against black and brown people? will contempt for the poor ever fade? will the occupant of the oval office ever be dead to america? when will women be treated equally? what will happen to the children of refugees? how can so-called leaders seem so unmoved by their caging of humanity? why are some folks so ignorant, cowardly and afraid of change? will calvin live beyond our years? will he die next week? next month? next year? how can i keep caring for him? could i really let someone else be his caregiver? will others prey on him? have they already? why do i feel such love and the next minute such contempt? will i ever get my life back? is this my life? what would life be like without him? will i ever return to rome? paris? madrid? will we ever leave maine? why do some folks believe in a merciful god amid such vast injustice and misery?


Photo by Michael Kolster

7.13.2019

curses

For the past two days I've been channelling my inner Joan Rivers, my best Samuel L. Jackson, my George Carlin, cursing worse, even, than Andrew Dice Clay. With paper-thin patience, I've been struggling to not let my kid drive me crazy with his constant grousing. Needless to say, I'm failing. To make matters worse, Michael has been out of town for three days at his solo photo show at the Telfair Museum in Savannah, thankfully to return any minute, so I've been flying solo since Thursday evening.

I haven't been counting, but I'm certain I've spat—at least once—most of the words on George Carlin's list of things you can't say on TV (think of the worst swear words possible) plus a peppering of other foul curses. I'm exasperated, sleep deprived and irked. Calvin has been intense the past two days, at times devolving into sudden manic tantrums, the source of which, since he can't tell me, I can only guess are either gas pains or a side effect of his Keppra, namely emotional lability.

I'm so fed up with listening to him shriek and whine and grouse all day for two days, and I'm sick of listening to myself at times respond with such ugliness. The scowl on my face feels etched in so deeply I wonder if it will ever fade.

Photo by Michael Kolster

7.12.2019

the ice man cometh

This weekend, the current administration has plans to raid our communities in search of unauthorized immigrants to deport. This will inevitably mean that the families of some of our neighbors will be split and splintered. This means that good people who have integrated into our communities, who contribute to society, many who build our homes, care for our children, cook our food, clean our hotel rooms and homes, harvest our crops, package our meat, and who pay billions in taxes, will be torn from their loved ones and their homes. This means that people, some who have lived in this nation for decades, many who have American wives, husbands and children, and whose children are dear to our own, will be forcibly taken, put into detention and face deportation, their only offense having been to flee hunger and danger, to seek a better life for themselves and for their families, to have claimed asylum.

Keep in mind these ICE (Immigration and Customs Enforcement) agents will likely not be targeting undocumented European or Canadian immigrants. Why? Because this is a racist policy put in place by a racist administration targeting Black and Brown people who fled from nations south of "our" border. This is an example of White Supremacy. Beware, American citizens will also be swept up in these raids because of the color of their skin. Like this administration's proposed census question, its neglect of Puerto Rico, and its Muslim ban, racial profiling will be at work.

Once again, I am reminded of fascist Germany's Nazi raids of homes like mine, in the kidnapping and detaining of disabled, infirm children before going after other "undesirables"—Jews, homosexuals, Catholics, non-White Europeans. It can happen again, even in this nation, lest we forget our government's internment of Japanese Americans during World War II. Like some Jewish American activists are doing, we should be protesting these seizures and detentions of refugees. We should be shouting, "never again!"

And when it happens, these immigrant and blended families will be left in shambles. Their breadwinners and caregivers will be arrested, detained, deported. Their children will be orphaned. Their communities will be shaken. Their families may never be reunited. We should imagine their fear as our own, and condemn this administration's actions.

Keep in mind these immigrants and refugees who, study after study show, make our communities safer, have committed no crime by claiming asylum on land that was stolen from its natives by many of our White ancestors, its prosperity largely built by slaves stolen from their native lands. These immigrants and refugees are not "illegals." Ironically, their ancestors may have lived in what is now Texas, California, Louisiana. These people are human beings. They love and toil and grieve and bleed just like the rest of us. We have room for them. We'd do better, be better, if we welcomed them. Remember the quote at the foot of our Statue of Liberty:

Give me your tired, your poor, Your huddled masses yearning to breathe free, The wretched refuse of your teeming shore, Send these, the homeless, tempest-tost to me, I lift my lamp beside the golden door!

Yes, the ICE man cometh. He will wreak havoc, tear wounds in our communities, rip apart families with his sanctimonious contempt for those he sees as threats to his privilege. But know that he is ignorant. Know that he stands on the wrong side of history. Know that his power is withering, his reign limited. Still, beware his acts of desperation. Shelter, if you can, these innocents from the ICE man's chilling grip.

Photographer unknown

7.10.2019

early drink

warm maine evening. semi-compliant child. lauren's sweet invite for an early drink. stroller ride, popping grapes and cashews into calvin's mouth from behind. gray clouds in parts of the sky. nellie by our side. sitting in lauren's screen porch on an heirloom swing with the perfect patina of peeling paint. calvin content for awhile pumping his legs and chewing on a plastic lid. rum and lime and honey on ice, plus a sprig of homegrown mint.

7.06.2019

secularly blessed

These past several weeks I've been feeling pretty fortunate, lighter and livelier simply knowing that my son Calvin has only had six seizures in a month's time. Granted, all of his seizures have been grand mals, but since 2007 they've been self-limiting, each convulsive fit lasting about about ninety seconds rather than the twenty or forty-five minutes of yore. Six is the rare figure equal to the least number of seizures in any given calendar month since September of 2016 when he had just five. That was when he was on a higher dose of Keppra by weight, and was still taking nearly four milligrams of the benzodiazepine, Onfi. In other words, this past month he's done as well as when he was on far more pharmaceutical medicine, albeit not as well as a nearly a decade ago when, on high doses of three anticonvusant drugs, his monthly seizures were in the low single digits. But back then we had what felt worse even than seizures: an impossibly manic, agitated and shrieking child who reduced me to tears nearly every day.

What also feels liberating to me lately is the absence of partial (focal) seizures these past several weeks. My gut tells me that their recent disappearance is due to the reduction in Keppra we did in mid May, though it could be due to the increase in my homemade THCA late that same month.

Noteworthy, too, is Calvin's recent growth and weight gain, which was enough to put him on the charts; for the second time in his life he has hit the first percentile for weight for his age. He's also in the thralls of puberty, sprouting hair in all the usual places and, on these hot, humid days, is just beginning to smell like teen spirit. Despite all of this, his seizures aren't going crazy. Knock on wood.

When I am feeling grateful about a relatively seizure-sparse month, it reminds me to be grateful for our other fortunes. I think about how lucky we are to be breathing clean air and drinking clean water, and for the privilege of living in a comfortable home in a safe part of a nation which is not war-torn. Also, we are secularly blessed this time of year to have air conditioning in Calvin's room, and to have a thriving yard chock full of beautiful flowering shrubs, a milky way dogwood in full bloom, a burgeoning perennial garden, and to be able to eat dinners in the screen porch that Michael built years ago. I feel most grateful for our friends, for our community and for Michael's job, and the fact that we have decent health insurance because, as unjust as it is, not everyone does ... yet. I thank my lucky stars for Calvin's various caregivers who help me out a handful or more hours each week. I think myself fortunate to live close to the college campus and its students, its athletic fields and their trails, and to our modest downtown. I owe a debt of gratitude to Calvin's medical marijuana dispensary where I get his THCA flower, and to the amazing folks at Palmetto Harmony for making Calvin's CBD oil. I'm grateful for wicked-smart people who have the wherewithal to advocate for women's rights, the rights of oppressed and marginalized Americans, and for the rights of refugees hoping for asylum who are currently being held in horrendous detention centers at our border, many of the children separated from their parents just as was done to enslaved Africans and Native Americans, and to Jews and others in Nazi Germany, causing great physical and psychological harm.

So this enormous gratitude and humility comes with more than a modicum of hope that Calvin's seizures continue to retreat and hope that our nation will choose to move forward—to progress—rather than to carry on its more recent backwards spiral into dirty air and water, fear, ignorance, hurt, hate and misfortune.

7.03.2019

leaves of grass

This is what you shall do; Love the earth and sun and the animals, despise riches, give alms to every one that asks, stand up for the stupid and crazy, devote your income and labor to others, hate tyrants, argue not concerning God, have patience and indulgence toward the people, take off your hat to nothing known or unknown or to any man or number of men, go freely with powerful uneducated persons and with the young and with the mothers of families, read these leaves in the open air every season of every year of your life, re-examine all you have been told at school or church or in any book, dismiss whatever insults your own soul, and your very flesh shall be a great poem and have the richest fluency not only in its words but in the silent lines of its lips and face and between the lashes of your eyes and in every motion and joint of your body.

—Walt Whitman, from the preface of Leaves of Grass

6.30.2019

never look away

Seeing the young woman forcibly whisked away by strangers, her family standing there motionless, paralyzed by fear, gave me chills. Though they were simply actors in a movie, it stirred something in me.

The film, Never Look Away, begins with the systematic kidnapping, sterilization and extermination of Nazi Germany's "undesirables"—the infirm, the mentally ill, the disabled—children and adults like my son Calvin whose life, as my friend Chris Gabbard describes in an article and in his recent memoir, is valuable beyond reason. In Hitler's regime, children like Calvin were guinea pigs, tortured in medical experiments and murdered in a state-sponsored effort to "cleanse" society of what Nazis deemed as stains on the Aryan race. Then the Nazis went after the Jews, likening them to thieves, rats and demons, instilling fear and hate in order to further their cause, which was to eradicate them.

These images are sickeningly reminiscent of what I see happening today. Refugees from war-torn, poverty-stricken, violent and corrupt nations are being portrayed by this administration as murders, rapists, snakes, infestations. Like animals, they are being crammed by the hundreds into spartan cages where their health and well-being are in jeopardy—little water, little food, no privacy, no basic hygiene. Their children are being forcibly separated from them. These refugees—our fellow human beings—are no different than most of us, except that they are desperate; they are good people, love their children, want a better life. We are not better than they. We can't lay claim to this chunk of earth stolen from its natives. We can't exploit their labor while neglecting their fundamental human needs.

Though I'm no Christian, I find myself asking, what would Jesus do?

Some people ask why we should be caring for refugees when we should be caring for "our own." Why does it have to be a choice? Can't we do both? I don't know how to solve this humanitarian crisis, though I have some ideas. But one thing for sure is that the current treatment of innocents is barbaric.

The other day someone characterized me as "pro-abortion." I corrected her by explaining I am pro-choice, then underscored the difference. I went on to point out, at least in my mind, the hypocrisies of many so-called pro-lifers—people who support capital punishment (state-sanctioned murder), and yet oppose food stamps, universal healthcare, same-sex adoption, basic care for refugees, a living wage and other measures that help vulnerable populations live and thrive and that contribute to a healthy society.

I think back on the film and on the Nazi regime it depicted, one in which its fascist leaders deemed some lives (Caucasian, Reich Church Protestants, healthy, cisgender) more deserving than others (Jewish, Romani, non-Europeans, the infirm, the disabled, Leftists, homosexuals, POWs, Catholics and followers of other religions.) I think about a world in which people, thanks to ignorance and propaganda, fear and hate others. I think about nations like ours whose so-called leader ridicules people like my disabled son, denigrates women, and maligns decent people who are Black and Brown and Gay and Bi and Trans and Jew and atheist and foreigner.

I think again about the atrocious conditions these refugees face in what epitomize modern-day concentration camps. I think about how so many Americans choose to avert their eyes. I consider the Canadian cartoonist who was fired for his depiction of a golfing POTUS playing through drowned refugees, Oscar Martinez Ramirez and his two-year-old daughter, Valeria. I am reminded that I must remain vigilant in protesting such inhumanity. I am reminded that silence equals complicity. I am reminded, when it comes to atrocities, we must never look away.

Photo AFP-JIJI