11.16.2018

relentless

Epilepsy is relentless. I tell you, it's some effed-up shit.

After a terrible October, November had been shaping up to be decent for Calvin, who had only two grand mal seizures and zero partial complex ones as of the thirteenth of the month. But then Wednesday's grand mal was followed by some sort of event yesterday morning at school (not sure what kind, but probably a grand mal) plus a half-dozen or more complex partial seizures all afternoon and evening culminating into another grand mal at 8:15 p.m. Though we gave Calvin rectal Valium during last night's grand mal to stop the cluster, and though he slept fairly well afterward, he's gone on to have three complex partial seizures today so far.

In summary, Calvin has had at least fifteen seizures in just over two-days' time, so November is on track to be worse than last month was. 

When these spates happen, which is all too often, I try hard not to despair. Michael makes attempts to console me by suggesting I not focus on the number of seizures. And while employing that strategy gains me some temporary relief, it's nearly impossible for me to maintain for more than a few minutes.

For families like ours, epilepsy—far more so than Calvin's gross visual impairments, autism, incontinence, cerebral palsy, physical and intellectual disabilities combined—seriously limits our ability to do literally everything. We're held captive by our son's disorder. Epilepsy is also frightening, harrowing, miserable, frustrating, taxing and dreadful. Folks routinely underestimate and misunderstand it. Living with a child who has intractable epilepsy requires hyper-vigilance, grit, focus, stamina, smarts, patience and strength. I don't doubt some folks probably think I'm overbearing and hypercritical, but it's what the job requires. Luckily, as David Bowie might say, I've become immune to their consultations; I'm quite aware of what we're going through. Besides, Calvin is the one who matters most.

One consolation during these seizure-filled spates that have peppered nearly every month for over a dozen years—though ironic in it's grim significance—is knowing I am not alone.

11.13.2018

other's struggles

Back at the grocer. We go nearly every day. Curious kids with their indifferent mothers idly ogle my son. Heedless of my seeing. Clueless of his blindness. Ignorant of his seizing. Unwittingly oblivious of the missing white matter in his brain. Elderly, disabled and homeless folks display their keen insight and compassion. My son hugs them. They make my day a better one.

Between cellophane-bagged grapes and neatly stacked waxed apples, we meet a woman. She says her name is Jane. She's drawn to my son. Calvin knits his fingers madly. Gawks at suspended fluorescents. She's unfazed. He can hear their buzzing. Still, her greeting seems to fall on deaf ears. I tell her he cannot speak. I tell her he seems due for a seizure. Her apple blossom smile withers some.

She and I stand and chat. I keep my son in hand so he won't wander. She tells me of her love of kids and of two ectopic pregnancies. No babies of her own to cuddle, no sons or daughters to raise. Instead, she spent time in children's hospitals giving love and gifts to sick ones. Knowing the struggles kids like mine and their families face, people's petty complaints bother her. I feel her pain.

Aside the grocer's bakery, I envision raging fires scorching acres of my beloved golden state. See burned-out cars abandoned roadside, bleeding aluminum. Regal oaks still stand, though now as blackened skeletons. Charred bodies wrapped in cobalt tarps. Entire neighborhoods, homes, lives, reduced to charcoal, cinder and smoke. I consider immigrants working in the fields not far away. Tireless. Sweating. Picking lettuce, apples, grapes. Backs breaking for little pay so the rest of us can buy fruit and vegetables cheaply. I tell Jane there's no comparing when it comes to others' strife and struggle. Everyone has their burdens others can't always see. People with hidden scars and weights sometimes complain. It's okay.

I muse on humans. We are the same the world over. Love our children. Do what it takes. Hope for better futures. Flee dangers. Seek out food, shelter, water, safety, equality. Desperate and fearful, we migrate for our loved ones' sake. Americans would be no different if faced with famine, war, despots, gangs, murder, rape. Like from burning buildings, we'd escape. Complacency and dispassion lead some to pass judgement. Others follow fearmongers blindly and willingly into thoughts and acts of hate.

I think of prayerful people, certain that their god will save them. So sure of answers to their pleas. Staid in their faithfulness. Good and loving folks whom nature haphazardly and grievously incinerates. Fires can scale the walls that even prayful people make. In god's name, pious war over territory on our precious Earth that has birthed us all. Whose land is whose anyway? If there is a god—I think to myself between plastic-wrapped fish and meat—there is one for all of us.

My child and I stand in line and wait to pay. He licks the glass beverage case. I wipe and kiss his drooly chin. Pat his head. Run my fingers through his hair. The woman in the other lane glares then averts her gaze. The man behind me smiles and winks, says goodbye and waves. My kid is seemingly oblivious. I'm sure he hears everything. Perhaps he can sense the burning embers others feel, their need to douse or hide their pain.

Camp fire, John Locher, AP

11.12.2018

gut and gumption

It has been over three weeks since Calvin had a complex partial seizure. He has suffered two grand mals this month, the last one being eight days ago. Though October was horrible and chock full of seizures, I'm glad I've followed my gut, which keeps telling me to have faith in his Palmetto Harmony CBD oil. When we first started him on the CBD oil last June, adding it to his Keppra and my homemade THCA oil, it seemed to help Calvin go forty days without a grand mal—about five times longer than his average stint. Shortly thereafter, though, Calvin lost that seizure control, compelling me to take to social media for answers. Some parents advised me to do what is called a CBD reboot, to eliminate the CBD for a couple-few days before reintroducing it at the starting dose. The logic stems from the notion that the body's cells become saturated with CBD, thus rendering it ineffective. Against my better judgment, I tried a mini-reboot back in July, which produced no positive results; August yielded twice as many seizures as July.

In my hyper analysis of all-things-Calvin, I recalled that he has always needed high doses of most of the drugs he has taken—Keppra, Depakote, Onfi, Zonegran, Lamictal, Banzel, anesthesia—for them to be effective. I asked myself, why would cannabidiol be any different?

And so since the mini-reboot, I've continued to slowly increase Calvin's CBD oil every couple of weeks while keeping his Keppra and my homemade THCA oil at steady doses. Calvin is now taking forty-five milligrams of CBD oil per day divided into two doses. Some kids Calvin's weight (sixty pounds) take as little as fifteen milligrams while others take several hundred milligrams daily. The range is impossibly large, making it difficult to know what amount of oil is too little or too much. At Calvin's current dose, I have seen his behavior improve. He is more compliant and, on average, is sleeping better. And though it is yet a small time frame, he has seized less as I increase the dose beyond its previous high in August. I'm hoping this tinkering will lead me to the sweet spot, that silver CBD bullet my husband doubts exists, but one I know exists for other children. Why not mine?

So, I'll keep trusting my gut, using it to guide me. It has been right before. Besides, what else is there? There's no crystal ball, traditional pharmaceuticals haven't worked, we've been told brain surgery is not an option, I don't have faith in the VNS, the ketogenic diet was a stressful, horrible wash, neurologists don't have much to offer beyond increasing drug doses or piling on new ones, there are few solid studies about cannabis and none that I know of on its dosing, and all kids respond differently.

When it comes to my non-verbal son, his epilepsy and its treatment, gut and gumption are really all I've got.

11.07.2018

glowing

This morning, feeling mostly rested from last night's soaking rain, I woke to see the sun's rays reflecting off of a yellow maple onto a wet cedar deck. Everything nearby—the driveway matted with leaves, the lichen-encrusted fence, the garage, the dawn sky—glowed golden. When I got Calvin downstairs I was greeted with the good news that so many women had won their hard-fought races in yesterday's election—White women, Black women, Latina women, Native American women, Muslim women, gay women, republican and democratic women—and that democrats had taken the House. I felt myself glowing.

After a cold, wet, four-day weekend spent indoors with a sick and seizing child, I stepped outside with Nellie welcoming warm wind and sun. Under a sky nearly as clear and blue as the ones in the West, I mused further on the outcome of the election, on a congress finally beginning to reflect more people like me—women—as well as one beginning to mirror the rest of America's growing diversity. I felt hopeful.

Later, when I sat down at my laptop, I came across a photo my sister-in-law had taken of her eighteen-year-old son, Ben, who had just voted in his first election. In the photo he was providing his family with up-to-the-minute election-night results, the light from his phone illuminating the American flag emblazoned on his chest. And although Ben, who lives in Florida, may not be happy with most of the state's results, I see in this photo the afterglow of what was in so many ways a promising election. I was proud to see his civic engagement at such a young age, while lamenting too many so-called grownups who chose not to vote.

It seems in great part that Americans voted for much of what I had hoped for in my last blog post: love, truth, honesty, decency, justice, equality, brotherhood, sisterhood, unity, wisdom, humility, empathy, charity, diversity. Now, I hope those elected can make policy so that not one American goes without affordable healthcare, not one person is denied their human and civil rights, not one person is disenfranchised.

I was also heartened to see that another state, Missouri, voted to allow the use of medicinal cannabis. Perhaps our new congress will legalize cannabis so we can board a plane with Calvin again. Speaking of which, though Calvin had a horrible October full of seizures, and a poor start to November, I'm still hopeful that the Palmetto Harmony CBD oil will help quell them when we find the right dose.

In the afternoon, I took Nellie out for another walk before Calvin came home from school. At the fields I saw a college student—tall, handsome, thick dark curly hair, light brown skin—taking a photograph with a good old-fashioned 35 mm camera. I waved him over knowing he was probably one of my husband's photography students. I introduced myself by name and as Michael's wife. Shaking my hand, he told me his name—Nate—then went on to explain that he was redoing the first assignment, noting that Michael's class is his favorite at Bowdoin, so he wants to put in extra time. When I asked what the assignment was he said, "light," motioning with an extended arm to the sky at my back. I turned to see that cumulus clouds had moved in above us and at the horizon, their puffy edges skirted in blinding white—silver linings—from the sun passing behind them. Along with everything else today, the sky was glowing, which I took to be a good and welcome omen.

Photo by Lisa Kolster

11.05.2018

on voting

vote for love. vote for truth. vote for honesty and decency. vote for justice, equality, brotherhood, sisterhood, unity. vote for strength in diversity. vote for equal rights, opportunity and protection for all human beings. vote for wisdom and sanity. vote for humility. vote for empathy and charity. vote for democracy.

vote against hate. vote against deceit. vote against greed. vote against racism, misogyny, bigotry. vote against fearmongering. vote against divisiveness. vote against conceit. vote against ignorance, disenfranchisement, oppression, intimidation. vote against corruption, nationalism, oligarchy and autocracy.

11.04.2018

godawful. godsend.

It's godawful to see my child seize, his mouth ghastly and agape, to hear that unmistakable, blood-curdling, strident seizure-shriek. It's godawful to see his muscles and limbs cramp and spasm, to know he has bitten his tongue or cheek again, to see bloody drool stain his pillow. It's godawful to know he'll suffer fits again and again, having already endured thousands of them.

Friday night's—the first of two in as many days—came out of thin air; no omens in the hours before. Afterwards, he whimpered like a pup, and though he cannot speak, it seemed as though he was trying to talk to us. Something papery rattled in his throat, impeding his ability to breathe. I crawled into his bed, gathering him in my arms as if that would somehow save him. Michael covered us and put on the nightlight. My boy's calm body belied his heart pounding feverishly under my palm.

The Palmetto Harmony cannabidiol oil I gave him in the seizure's wake seemed to thwart a second one that morning. He calmed and rested on and off all day. Weary, though unable to sleep, I read something my friend Martha Brockenbrough wrote which resonates with me:

We often are in the midst of stories we did not ask to experience.

But the task for us as human beings, as living beings, is to see what is in front of us. To love each other closely enough that we do not need words to understand the truest things.

Life asks us to look. And it asks us to clean up messes. It asks us to walk each other to the door.

She went on to say:

And we can look at a living being who is vulnerable and in need as a burden. 

But she asks us to do more—feed, clothe, shelter and love everyone.

At times all too often I do feel my son is a burden, one whose weight literally pulls at my joints and tendons, whose agitation chips away at my patience, whose restlessness impairs my sleep, whose seizures abrade my psyche, whose future terrifies me. But he is also a reason for being—a secular godsend—a human worthy of all the attention and love any of us can give him. He reminds me of the immigrant, the refugee, the waif, a being so vulnerable he needs constant protection from the elements, from accidents, from policy, from those who would prey on him.

In the dark, my mind races alongside Calvin's heart. I think of the upcoming election and what's at stake—the environment, human rights, education, justice, entitlements, healthcare, including protections for people like Calvin who have preexisting conditions—and I wonder why anyone would vote against their own or their children's interests (or not vote at all, presenting a similar risk.) A vote for the status quo would be godawful for a majority of women, the disabled, students, People of Color, LGBTQ folks, non-Christians, immigrants. A flip of the current leadership would be a godsend.

Before Michael and I had tried falling back to sleep in different beds, he reached down and pat my head. Cradling Calvin, I looked up at my husband, my eyes tearing, and said what I so often feel, "I'm so sorry you're not the dad of a regular kid."

And as I held my bundle of burdens, his throat rattling with each breath, I wondered what I'd do without him, my little godawful godsend.

             
A typical grand mal for Calvin, 2011.

10.31.2018

halloween past and present

On the eve of this Halloween we woke to a nightmare; Calvin had one of his night terror-pain episodes—an hour or so of screaming and writhing in what seems is excruciating pain. Not knowing the source of his misery, I first gave him an acetaminophen suppository. When that didn't work, half an hour later I gave him ten milligrams of Palmetto Harmony CBD cannabis oil rectally. I crawled in bed with him expecting him to continue writhing, but he fell right to sleep, his arms wrapped tightly around my neck.

Twelve years ago, on Calvin's second Halloween ever, he underwent a circumcision, with the hope of stopping the urinary tract infections that had triggered his first two grand mal seizures. We called that one—not endearingly—Halloweenie.

We've spent a couple-few other Halloweens in the hospital enduring 72-hour EEGs, and on others we spent upstairs nursing Calvin after seizures.

It has only been in the past three years that we've taken Calvin door to door trick-or-treating, and even then we only go to five or six nearby houses. Calvin is totally unaware of the holiday, cannot hold a bag, can't unwrap the candies, doesn't anticipate or delight in dressing up. If he is doing well enough, we take him nonetheless, just to feel some semblance of normalcy. We selfishly do it for our own benefit and because we think the neighbors enjoy seeing him.

Tonight, in light rain, we hit three homes around five o'clock; our other neighbors were still at work. Calvin rocked his manwitch (wizard) costume, on which I didn't spend a dime. He fared better, probably, than any trick-or-treat outing yet, though became weary quickly, probably from the nightmare on the eve of Halloween.

click on any image to enlarge.

10.29.2018

weight of the world

October has been, in great part, kind of miserable for me and my son—grand mals mark up my calendar dates in orange highlighter; too many blue squares represent partial ones. My son has seized on nearly half of this October's days. He hasn't had a month this bad since January.

Again, I ask myself all of the pertinent whys. Again, I spend long, monotonous days nursing a sick kid. Again, I grieve the loss of a healthy, typical child. Still, I am grateful for our privilege and fortune, for our nation, our home, Michael's job, our food, our drink, our relative health.

Outside these four walls the world seizes. A journalist is brutally murdered in his nation's embassy abroad. Innocents are starving to death in Yemen from a famine aggravated by Saudi attacks using weapons we supply. Central American refugees are fleeing poverty, rape and homicide in search of a better life. Homemade bombs are sent to prominent democrats—People of Color, vilified women, and former presidents. Two African Americans were shot while trying to shop at a grocery store. Jewish friends are once again made into scapegoats. Tree of Life synagogue was shot up by an anti-Semite. Eleven people dead. The list of innocent men, women and children maligned and murdered for the color of their skin or their religion continues to rise. Some conservative White Christians sit back and bristle at the thought of their political leaders and pundits being confronted and harassed at restaurants, while never seeming to flinch at the oppression, abuse and murder of marginalized Americans by domestic right-wing terrorists and White supremacists.

The anti-Semitic shooter gunned down two intellectually disabled brothers—the innocent of innocents, the purest of the pure—reminding me of the first victims of the Holocaust who were people like my son Calvin: the intellectually disabled, the infirm. I hear too many Americans grouse about athletes kneeling during the so-called national anthem. I see too many efforts to suppress the votes of minorities. I watch videos of White women calling the police on Black Americans who are minding their own business mowing lawns, swimming, barbecuing, shopping, entering their own goddamn homes. It angers me, this continued harassment, abuse and disenfranchisement of my fellow Americans who work their asses off, pay their taxes, live good lives. They're far better men and women than many of these politicians are.

Sometimes I wonder if Calvin's seizures are—like the gravity of a full moon—triggered by the weight of the world. I wonder if they'll ever stop, or if they'll keep marching right through. With his and others' suffering in mind, I scour the internet for images of Yemen. I find the photo below. I think to myself what we all should be thinking—this could be my child.


Photo by Abduljabbar Zeyad/Reuters

10.23.2018

the rest of us

Outside raking, I try to make sense of this effed-up world we're living in. In the cool glow of an overcast afternoon, I work up a sweat turning needles into piles of copper, all the while conscious that wealthy White Christian conservative men (and a smattering of their female counterparts) are brazenly cheating and lying, trying to control, disenfranchise, oppress and legislate the lives of the rest of us.

Who are the rest of us? I'll tell you: women, Black people, Latinos, Native Americans, Muslims, atheists, Jewish people, old folks and the infirm, mentally or physically disabled folks, young folks, students, union members, artists, journalists, teachers, scientists, environmentalists, public employees, poor people, gay, lesbian, bisexual and transgender people, homeless people, former inmates who have done their time and paid their debt to society or should have never been incarcerated in the first place, immigrants, pregnant women, and people who have preexisting conditions like my little boy.

My son Calvin by the way, because of his disability, cannot—nor will he ever be able to—vote; the rest of us must do it for him and for each other, or risk continued disenfranchisement by the powerful few who have nothing to do with the rest of us except to exploit. They have shown us what matters to them, which they will protect at any cost to their constituents and to the earth itself: money, power, control. They have proved incapable of walking in our shoes. Vote them out. Vote now.

10.19.2018

glimpses

Before he came into the world, I used to have glimpses of myself with him as a baby at the beach, the two of us plopped on a blue and yellow sunflower blanket, his blond curls caught by the wind. Imagining him older, I'd see us walking silently through a pine forest, looking up through the trees, watching for woodpeckers, hearing the creak and squawk of rubbing branches in the canopy. At some point I thought perhaps we'd fly with him to New York, to France, to Italy.

Now I walk alone with my dog Nellie across a vast field, tears trickling down my cheeks. I call her and she runs to me. Half-heartedly, I play hide-and-seek. She understands and can do so much more than her human brother. I get glimpses, but mostly I feel so little semblance of what I think parenthood must be. My fitful grief gets all balled-up with loss of hope, expectation, ambition, dreams.

It was hard enough knowing much of his brain's white matter was missing. Worry. Then my planned cesarean turned into an emergency. Fear. Then he needed help breathing and eating. Anxiety. Then he failed to thrive and barely develop. Guilt. Then we learned he could hardly see. Despair. It took him years to crawl and walk, and he has spoken just a single word—Mama—once. Misery.

Then he started to seize.

We keep him alive. Keep him fed, keep him warm, dry and clean. Try to control his seizures. Like any parent, we love him immeasurably, but beyond occasional smiles and giggles, there are very few glimpses of normalcy or happiness in our infant-toddler-teen.

In my lowest moments I think of good, productive and exciting lives wasted on years of soiled bibs, dirty diapers, sopping garments, sleepless nights, hopeless futures, monotony. Had our son been born healthy, I consider the freedom we'd be moving into with a child old enough to be alone. I juxtapose that glimpse of liberty with a heavy one of wondering how long my body and spirit can withstand the burden—my child's weight, his restlessness, his seizures, his behaviors, his need. I glimpse that burden in the mirror. I feel his trouble settling inside of me.

10.17.2018

of monsters and medicine

Writing would be so much easier if not for my son—my non-verbal, incontinent, legally blind, autistic, disabled, seizure-prone, drugged-up child who, as I've written before, sometimes reminds me of a mini Frankenstein's monster. Come to think of it, everything would be easier—sleeping, waking, eating, traveling. I'm up at least a handful of times every night to check on and reposition my boy. I often wake to the nightmare of his grand mal and partial complex seizures. I can never sleep in past 6:30 since he must get his antiepileptic drugs first thing in the morning, and he's really a two-person child. Since Calvin goes to bed early and often eats different food than we do, we never eat together as a family except on Thanksgiving. And because Calvin is prone to get or fall out of bed and hurt himself, and therefore sleeps in a safety bed, we haven't figured out how to travel with him, plus we can't legally take him on a plane because of the cannabis oil used to treat his epilepsy.

Going back to writing, today I got my third rejection from The Sun magazine for a piece I submitted years ago titled Of Monsters and Medicine, about me and grief, Dad and his cancer, Mom and her Alzheimer's, Calvin and his epilepsy, and cannabis as medicine for all. Four years ago I was ecstatic when the magazine published my first piece in print, Faith of My Father, which appeared in the August 14th issue next to an excerpt from a book written by Gary Snyder.

Earlier this month, The Sun's managing editor assured me she'd soon have an answer as to whether they'd accept my Monster piece for publication, which I had written in response to their request for writing on caregiving, medicine and alternative therapies. I thought my prose would be a good fit. I guess I was wrong.

The rejection hit me harder than expected, probably because I am so goddamn sleep deprived and since Calvin has had such a sucky month seizure-wise. He's had five grand mals (his fifth one this morning) and at least nine partial complex seizures so far, for a total of fourteen in just seventeen days—nearly twice the number he had in all but one month since June—and we still have two weeks to go till the end of the month.

As I write this, my brain is in analyze mode, trying to figure out what the hell to do with Calvin's Palmetto Harmony CBD cannabis oil dose. I think my mind and my gut are telling me to increase the dose (since decreasing it seemed to yield more seizures, and since I decreased his THCA several weeks ago, and since he has gained a little bit of weight, enough to outgrow his Keppra dose which I don't want to increase, and since it seems with the administration of more CBD his seizure clusters usually stop.

What's so difficult is that the range of CBD dosing is so vast—anywhere from a dozen or so up to several-hundred milligrams per day of whole-plant oils, to as many as six- to thirteen-hundred milligrams for kids taking Epidiolex, the non-synthetic pharmaceutical version. But I must remember that Calvin has always seemed to need higher doses than most kids his age and size for any drug to be somewhat effective.

And as I sit here looking out over my garden I'm reminded that, if not for my little monster Calvin—even though he makes everything under the sun uber difficult—I may not have begun writing at all.

10.13.2018

on forgiving

I was awakened six times by my restless child until the grand mal finally took hold. From three-thirty on I got no sleep at all, next to me my boy waking every several minutes pressing his eyes, his heart pounding. It seems the Palmetto Harmony CBD oil I gave him after the fit may have thwarted subsequent ones. If nothing else, at least the cannabis appears forgiving, its side effects mild if not often positive compared with other antiepileptic drugs known for their mind-numbing, body-clobbering impact.

Resting next to him, I mused on the word, forgive, and its derivatives. To ask for forgiveness requires courage and humility in admitting our transgressions. To be forgiving is to offer understanding, while allowing space for mistakes made, and perhaps recognizing and admitting our own. Forgiveness might just save us from ourselves and others, assuming it is asked sincerely and given with grace and mercy, rather than with spite and reproach.

Calvin is no doubt the most forgiving soul I know. I take lessons from him, try to emulate the stamina of his kindness, his eternal forgiveness in the face of my anger and frustration. Unconditionally, he forgives my every flaw with or without my asking. He is inspirational. My muse. My hero. He allows me to forgive even myself.

Photo by Michael Kolster

10.09.2018

others' shoes

Hard as I try, I can never get inside my disabled, non-verbal son's head. I long to know what Calvin is thinking. I often wonder how he feels. Does he dream, does he remember, does he dread? Though I can never know the answers to these questions, in my quest to understand and to empathize with him—and to suppress my inclination toward anger and frustration at his protests—the best thing I can do is to put myself in Calvin's shoes.

Long before Calvin, I thirsted to know the experiences of others unlike myself—People of Color, the homeless, people from foreign lands. So, after graduating college I set off to explore the world—Great Britain, Europe, Turkey, former Yugoslavia, Kenya, Tanzania, Egypt—in search of other, and to find my best self. I saw firsthand how others lived—in urban apartments, in mud and grass huts, in slate-roofed brick inns, in bungalows. Everywhere I went people were the same—kind, generous, loving, trusting—and yet different in the ways they cooked, the foods they ate, how they worshiped, the way they labored. When I returned home I began to explore what life was like for my fellow Americans.

Yesterday—Columbus Day to some—was what many of us have reframed as Native or Indigenous People's Day. It's a day to honor the millions of Native Americans and their descendants whom Columbus and those like him did their best to exterminate and homogenize, the same people who continue to be marginalized today. Last Saturday night, Michael and I discussed the holiday with a group of friends. We spoke of the horrors that Native people faced when White imperialists invaded the Americas—genocide, disease, pillaging, slavery, kidnapping, rape. We spoke of the terror indigenous parents faced when their children were snatched from them and given to White Christian couples to raise. We cringed hearing that Natives who dared to speak their own languages risked having their tongues snipped by Whites. For hundreds of years, a similar horror befell African men, women and children who were forcibly brought here during the Atlantic slave trade and—if they survived the brutal months-long journey—were denied their religion, their language, their customs, their dress, their freedom, their families, their lives. As we spoke of these atrocities, I imagined walking in their shoes.

The subjugation of Brown and Black people continues today with policies that restrict their mobility and limit their access to housing, proper education, healthcare, employment, clean water, safe streets, the right to vote, and exposes them to criminal justice biases and laws that put them behind bars at alarming rates compared with Whites. What's more is that many if not most Whites deny this racist paradigm, willfully submitting themselves to—and emboldened by—the false propaganda of racist fearmongers like the current part-time, temporary resident of 1600 Pennsylvania Avenue and of his attorney general.

The other day I heard my state's US Senator Susan Collins—in a forty-five minute speech defending her support of a Justice Kavanaugh—say that she imagined walking in his shoes. While some of my best friends are White men, the shoes Senator Collins and other legislators should be imagining themselves walking in are the shoes of sexual assault victims and the shoes of the vulnerable and disenfranchised, whose numbers dwarf those of self-proclaimed wrongfully-accused White men. With few exceptions, White men are not the fragile of us in this nation; they are fortified, buttressed by centuries of laws upholding their rights before all others to own property, go to college, get credit, run for office and vote. They are not the oppressed; in government—on the Right—they are the oppressors. They are not the abused or terrorized; statistically, they are the abusers, the terrorists. And while I agree that many White men work their asses off to get ahead, because of the White male paradigm in this nation they have had a major advantage and—due to neglect or intent—have impeded others' progress far too long. The rest of us continue to struggle—to be paid an equal wage for the same work, to be free from racial profiling, to feel free to peacefully protest our oppression, to be sentenced fairly when we do wrong, to feel safe having a drink at a bar or party, to feel safe to camp and hike and walk alone at night, to feel safe calling the cops, to feel secure in our own cars, neighborhoods and homes, to feel safe to identify our assaulters. These are all freedoms virtually guaranteed to White men while being denied, through policy and/or practice, to the rest of us.

Furthermore, we who value freedom, justice and truth should rebuke so-called leaders who blame sexual assault victims calling them hoaxes, who champion legislation that limits freedoms of marginalized people, who disparage and malign women and People of Color, who characterize White supremacists and Neo-NAZIs as "good people," who align themselves with vicious dictators, who call African nations "shitholes," who pitch us against each other for selfish gains, who lie often and with impunity, who incessantly praise themselves, casting aspersions on others while never holding themselves accountable for a goddamn thing—and who openly and unabashedly mock people like my sweet boy Calvin.

We should recognize, own and credit—not feel guilty for or ashamed of—our privileges as White folks in this amazing land stolen from its natives and built on the backs of slaves. We should believe our fellow Americans when they say they are being oppressed. We should champion causes for the marginalized and most vulnerable of us. We cannot hope to better ourselves and our nation until we understand and empathize with the plight of others. The first step is to decide to walk in their shoes.

oh, and for paradigm shift, please go to vote.org

Photo by Floriana-Barbu

10.06.2018

fifty-five

Today I'm celebrating my fifty-fifth spin around the sun. Tomorrow I celebrate eight years of writing a blog that I never imagined could garner over a million hits while helping parents of kids with epilepsy wean from their benzodiazepines, navigate the world of medicinal cannabis oils, and understand that they are not alone.

In honor of the milestone, for which I'm most grateful—grateful to my parents for having "mistakenly" made me, grateful for being alive, grateful for being healthy beyond a few achy joints, grateful for, and humbled by, the many privileges I enjoy due to the accident of birth—I squeezed into a favorite t-shirt I haven't worn in years, one that has the number 55 emblazoned on its front.

My mother used to tell me that we never really reach maturity, rather we continue to mature as long as we are alive. As a youngster, I thought that sounded pretty wise and thoughtful, and I fully embraced the notion. Since then I've continued to enjoy getting older. I figure with age comes experience and with experience comes wisdom. At least I hope I'm getting wiser; Oscar Wilde said age can sometimes come alone—yesterday's regrettable senate vote on supreme court nominee Bart (or is it Boof?) O'Kavanaugh was a validation of said premise.

Over time, I've come to consider birthdays as opportunities to explore how I can improve myself and find new ways to contribute to the betterment of the world. This year, I'd like to get back into jogging with the hope of lowering my stress level and strengthening my body, and perhaps fit into my jeans and tops with a little more wiggle room. I also want to use my agency to change the stale political paradigm, want to smash the conservative white-male patriarchy into bits, want to support new faces and voices, and promote progressive ways of managing an ever-changing world. Conservatism and originalism be damned. Nothing is fixed. The only constant is change.

So, as I celebrate another passing year, I hope to remain open and brave, not fearful and closed. I hope to see each day with new eyes ready to explore the beautiful and awful unknown. I hope to embrace humility while remaining fierce in my fight against bigotry, and sturdy in my struggle for justice. Most of all, I hope to keep growing older for a long while, and I aim with my everything to evolve.

10.05.2018

nursemaid

I remember being eager to meet my child for the first time. Rubbing coconut oil on my pregnant belly after a swim, I wondered what he'd be like (I was pretty sure I was going to birth a boy). Would he have blond hair like I did as a toddler? What color would his eyes be? Might he grow up to be tall and thin like his dad and my father? Might he become a world traveler? A teacher? An artist? A writer or musician? I dreamt about all kinds of things we'd do together, mother and son.

I had often wondered what I'd do if I were to have a disabled child. But, like any of us, I never truly believed it would happen to me. After all, I was so very healthy, especially after I quit my toxic job.

And then, two weeks before Calvin was born, doctors told us that something was terribly wrong—the lateral ventricles in our baby's brain were enlarged, possibly due to bleeds in his brain.

Yesterday, I held my tiny fourteen-year-old child in my arms as he seized on and off all day long. He had had two grand mals the night before, and he woke to another grand mal this morning. He's had more seizures in the last two-and-a-half days than he did in the entire month of September. I don't know what is going on.

Am I giving him too much CBD, or does he need more? Is he going through a growth spurt? I swear he is taller than just a few weeks ago. Are puberty's hormones causing this bad streak? Is he sick again? Is he experiencing a latent spate of benzodiazepine withdrawal?

I ask myself these questions often. Yesterday, while coaxing Calvin to drink even the slightest bit of water, I realized no one would do what I do for Calvin, not even in a hospital or nursing home. In some ways I feel more like his nursemaid than his mother—safely lifting him from his bed to his changing table and back again, taking his rectal temperature, monitoring his bowel movements, giving him daily suppositories, sometimes having to digitally remove his stool, syringing water in his mouth when he won't drink, giving him rescue meds when waves of seizures come, researching new medicines and treatments for epilepsy, constipation etc., making THCA cannabis oil, trying to collect urine for laboratory testing by placing cotton balls in his diaper, waking up scores of times nightly to check on him, lie him back down and cover him, tend to him if he is seizing.

After the third grand mal in as many days, plus the unknown number of partial complex seizures in-between, Michael and I decided to give Calvin Diastat—rectal Valium—to stop the cluster. So far it has worked. What I do next, I am not certain. I'm not a doctor, and neurologists rarely, if ever, have the answers. So I'll have to consult with other parents on social media, and I'll have to trust my motherly gut, and employ my nursemaid power.

10.03.2018

too good to be true

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

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

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

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

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

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

10.01.2018

changes

The kid we have now is the kid we will likely have in years to come. With few exceptions, Calvin is the child he was five, ten, twelve years ago. He still wears diapers, still can't talk, still whines and coos, still spins in his jumper, still crawls on the ground, bangs shutters, bites rugs and stares at the sun.

He still takes medicine and endures scores of seizures every year.

This weekend, however, marked another personal best: Calvin walked with me and Nellie nearly a mile—down and back from Lauren's house—with a brief break to sit and drink some fresh, unfiltered apple juice with Lauren. Calvin has walked to Lauren's only twice before, though he has never walked back. Having said that, Calvin still pulled his usual antics of trying to drop down every few yards once we got about halfway to her house. I'm ashamed to say that my friend Stephanie, having seen me struggle outside her house came out and helped me with Nellie, had to witness me cursing my exasperating situation. Thankfully, like a rental horse returning to its stall, Calvin exhibited little stubbornness on the walk back home.

Sunday was a repeat performance; Michael and I took Calvin and Nellie to Portland where we strolled several cobbled blocks with a compliant child. It was the first time we've visited Portland without having brought Calvin's stroller along.

In pondering these recent milestones, it seems that with each passing month since his last dose of benzodiazepine Calvin's stamina improves. Perhaps, too, taking less Keppra, by virtue of his weight gain, probably helps him too. Additionally, the reduction of his THCA cannabis oil seems to be helping him have less agitated afternoons. Moreover, the addition of Palmetto Harmony CBD oil, unlike other CBD oils he has tried, appears to be reducing his seizures overall; since starting it in late June, Calvin's monthly grand mals have gone from six to eight down to four or less. If Calvin continues on this positive trajectory, he'll have fewer seizures this year than in any year since 2014 when he was taking way more medication!

So, though the kid in the video below, which was taken just before his eighth birthday (he is now fourteen), is heartbreakingly much the same as the one we know and love today, I am deeply grateful he is doing better in terms of behaviors, stamina, understanding, sleep and seizures. And though my kid isn't riding bikes, competing in sports, writing essays, planning for college—on the contrary can barely push a doorbell—I embrace and consider his tiny milestones as significant and positive changes.

              

9.28.2018

things i like and not so much

things i like:

my affectionate, soft, squishy kid. honesty. peanut butter and chocolate ice cream. clear blue autumn skies. compassion. kick-ass women. humility. the dappled light through trees. curiosity. strength in numbers. truth. shiny beetles. popcorn at movies. charity. chef husband. forthrightness. writing at my desk. transparency. sun-drenched windows. kindness. gray hair. seizure-free days. forgiveness. hours of pouring rain. empathy. the aroma of newly spread mulch. equality. friends. decency. frank zappa. mercy. new adventures. bodies of water. love. the innocence of children. courage. strong coffee. humor. justice. trees.

not so much:

condescension. flying squirrels nesting in the eaves. duplicity. achy joints. light pollution. greed. sleepless nights. blame. belligerence. my child's seizures. liars. television. winter coming. anxiousness about the safety of my son. bigotry. sloth. the loss of what I hoped parenthood would bring. misogyny. despair engendered by the notion of my son's bleak future. disingenuousness. defensiveness. dog shit stuck in my treads. phonies. unaccountability. bombast. headaches. green peppers. mansplaining. entitlement. cowards. threats. conceit.

Photo by Michael Kolster

9.27.2018

kick ass chicks

I shared dinner the other night with a new friend. We huddled up to the bar of our local sushi joint and were pampered by the lovely young, vivacious manager, wearing a peachy summer frock. We noshed on sushi and tempura while drinking cold fizzy unfiltered sake from tiny cobalt glasses. Some boisterous college students crowded around tables behind us dunking over-sized straws into large bowls filled with rum and fruit juice.

As the night wore on, and a pile of empty edamame pods grew, we talked of reunions, old friends and family, then the conversation turned to our boys and eventually to the concept—the reality—of our grief and hardship. I asked her how having a child with a rare syndrome who might not live out his childhood years has changed her, knowing well my own constant and honed awareness of Calvin’s mortality. The one underlying thread that came through in her words, and was perhaps even invisible to her, was her amazing strength. Maybe she was born with it. Perhaps she acquired it in high school or college, but more likely much of it was newfound. I think the chick can kick some major ass, especially when it comes to her boy.

She went on to tell me how, before her son was born, she was quieter, maybe even timid. But she soon learned a few lessons that mothers and fathers of chronically sick kids learn when they go to hospitals and inevitably, somewhere along the way, receive poor, even negligent, treatment. She learned to advocate. She learned to be assertive. I knew exactly what she was saying. I’d been on the receiving side myself, or I should say, that poor Calvin has. 

I recounted for her the first time Calvin was admitted to the NICU for status epilepticus, a dangerous, sometimes fatal, prolonged seizure or series of seizures. He was little, only two and small for his age, and an adult neurologist put him on his first anticonvulsant drug. Michael and I requested the drug literature and while reading through it, as Calvin wailed and writhed and screamed raving mad like we’d never heard him before, we realized he had been given twice the appropriate dose for his weight. We were beside ourselves. And after alerting the nurse the neurologist changed the dose without apology or recognition of error.

My friend then listened to me describe the painful, bloody emergency intubation that my two-year-old Calvin had to endure without anesthesia, while he was breathing. His respiration had temporarily stopped during a seizure, which is not uncommon, but had resumed and yet the intubation was deemed urgent by a hospital physician who had never met Calvin. It was carried out amidst Calvin's thrashing and terrified shrieks of pain. I told my friend about the time it took two nurses and a doctor over thirty minutes to successfully insert an I.V., during one of Calvin’s prolonged seizures, in order to administer emergency medication to stop it. Why they didn’t jab an intramuscular drug into his thigh (which at the time I didn’t know was possible or I would have asked for it) to this day I do not know. Upon first arriving at the emergency room I had apprised the medical staff that Calvin was a “hard stick” so to please give us their most talented IV specialist. My request, for whatever reason (lame) was not heeded (and never has been in subsequent circumstances) and Calvin suffered—greatly—a forty-five minute seizure, far longer than he might have if the drug had been delivered in a timely manner.

So, my friend and I exchanged horror stories about our underdog kids who can’t really walk completely by themselves and can’t talk, whose health is significantly compromised, whose lives seem to balance on a thread—from here to tomorrow—perhaps equal to our own strength. These stories might have seemed completely inconceivable except for the fact that we have lived them. As I sat next to her at the bar, looking into her clear, bright eyes, her sassy earrings jangling to and fro as she bobbed her curly head, I realized that I was looking into a dark mirror, one that looked back at me and said, yes, I know ... I know. And as we left the restaurant, our bellies full and warm, my adrenaline pumping, all I wanted to do was to go out there into the world and kick some major ass.

Original version published 09.12.11

Calvin, 2006

9.22.2018

rough patch

Throughout the film Tully, watching her I saw myself in a thick, frumpy Charlize Theron screaming at her unhinged kids from behind the wheel of a car. I saw a slice of my life in nearly every one of her scenes—moaning in pain from engorged breasts, wincing at cracked nipples, slouching hopeless in a robe with a frowning mouth and sleep-deprived eyes. I watched her chop food into bite-sized bits, neglect housework for days, advocate for her "quirky" child at an ill-equipped school, field scowls from disapproving strangers, surrender what had been an exciting life to be a devotee of family and home.

In any given month our son suffers more than a handful of seizures, countless manic outbursts, tantrums, restless days and nights, the occasional night terror, and—for me—incessant monotony. As Calvin's mom I likely suffer from what other mothers of disabled epileptic children sometimes call Persistent Traumatic Stress Disorder—stress resulting from the accumulation of past and present strain plus the dread of a bleak future for ourselves and our children.

When I see friends around town, having read my blog they often say, "Sounds like you guys are going through a rough patch." What they may not realize is that this rough patch has lasted fourteen-and-a-half years. Since two weeks before Calvin's birth, when we found out he was missing a significant amount of the white matter in his brain, the burden hasn't let up in any substantial ways. Furthermore, outside pressures—reeling from a friend's suicide, confronting maddening issues with Calvin's school, the difficulty managing his illnesses, the lack of a nurse to help us a little, the current circus-of-an-administration and it's shameful treatment of a sexual abuse victim—add to the strain.

Today, I'm at home with a sick kid who, as a result, had grand mal seizures on consecutive days. He isn't eating or drinking and can't tell me what hurts, nor can he seem to remain calm for more than a few minutes before getting up and pacing restlessly.

So, I guess—like Charlize's Tully does—I should admit we're in a bit of a rough patch. I should soldier on through it, relax once Mary gets here to help us out so we can go celebrate our anniversary, and remember that tomorrow is a brand new day.

Photo by Michael Kolster

9.20.2018

humanity of kinds

Humanity is black and brown and white and infinite, glorious other tones. It is preemie and teen, middle-aged and elderly. Humanity is supple, spare, furrowed, hideous, wiry, gorgeous and fat. It is long-legged and stout, walks hunched over and crawls on its knees. It limps with crippled arms drawn to its chest, and glides along exquisitely. It is sweet and reeking, chiseled and smooth, ratty and chic, and thankfully never perfect. Humanity bleeds.

Humanity is iron-clad abs and double chins, muffin tops, beer bellies, rotten teeth, gorgeous curves, saggy boobs, hard arms, unruly curls, waxed bald heads, botox lips and tattoos. It is blind and deaf, blond and brunette, ebony and ashen, gay and straight, female and male and everything in-between.

Humanity is artist, driver, janitor, billionaire, chef. It is designer, clerk, nanny, vagrant, vet. Humanity is bumbling fool and genius. Humanity is a spray-tanned, petulant, petty, small-minded, selfish, immoral wreck. It is an enigmatic child, speechless and seizing, careening through each fragile day.

Humanity is mother, father, brother, sister, child, criminal, saint. Humanity loves who it loves, shares its woes and hides inside. Humanity seizes and shits, suffers angst and despair. Humanity is ignorant and bigoted, embracing, progressive and wise. Humanity sticks a needle in its arm and a finger down the back of its throat. Its flesh and bones are riddled with disease. It is gluttonous and ravenous, skin sometimes stretched over starving bones. It wars, invades, rapes, beats, murders, imprisons and steals. It stumbles, bruises, breaks, grieves. It too often turns on itself.

Humanity—of another kind—is compassion. It is charity, love, empathy, openness, benevolence and gratitude. It is selfless, magnanimous, forgiving and generous. It shares freely of itself, expecting nothing in return. Humanity is not excess nor greed, nor is it oppressive. Humanity helps its brother and sister. It is not afraid of other. Its kindness and understanding have no borders. It reaches deep, crosses divides, walks in the shoes of others, empathizes with the little guy.

9.16.2018

psychotic child

I stood in Woody's driveway and wept. As Woody hugged me and brushed away my tears, Calvin banged and bit the white vinyl siding of the garage where there is a permanent stain from him doing so for years.

My son was experiencing a repeat of the previous day's deranged behavior, a harbinger of the next morning's grand mal seizure. Typically, a grand mal acts as a kind of reset for his lunacy, but this time his fidgeting and "ooh-oohing" and fingering lingered and worsened as the day went on until he was utterly psychotic and, as a result, perhaps so was I.

Later, as I sat on the edge of my bed watching Calvin stand facing out our bedroom window, his jaw clenched, arms up, fingers wildly snapping inches from his face, I wondered how I'd take it anymore. Seizures are easier than this, I thought. This psychotic child of ours is so unreachable—seemingly inhuman—in these agitated moments, which sometimes last for hours and have been reliably happening with frequency for years. Suddenly it occurred to me, as it has before, that perhaps Calvin was suffering from the effects of too much THC. He'd gotten a bit extra cannabis oil after the seizure to prevent subsequent ones, and it worked. But both of the cannabis oils Calvin takes—my homemade THCA oil (THCA is non-psychoactive) and the Palmetto Harmony CBD oil (also non-psychoactive)—have small, residual amounts of THC, which is psychoactive; It is impossible to make whole-plant oils that don't have traces of THC. I should note here that all pharmaceutical drugs are psychoactive.

My hunch about THC and my hopes for CBD led me to the decision to forgo Calvin's 3:00 p.m. dose of THCA, even though I credit the advent of that dose with virtually eliminating Calvin's early evening grand mals four years ago. At this juncture I feel it necessary to give a secular amen for THCA, which no doubt helped my son get off of his benzodiazepine, clobazam, aka Onfi.

When I was able to grab my computer, I looked up THC and its effect on children. One of the first articles I found was this one, which I scanned from top to bottom. What stood out to me was the use of the words, excessive and purposeless motor activity of the extremities (hyperkinesis) to describe one of the side effects of THC toxicity in children. Though psychomotor hyperactivity is also a side effect of benzodiazepine use and their withdrawal, I wondered if Calvin might be exhibiting this behavior because of the extra THC. Having read the article twice, then used Woody, Michael and my friend Lauren as sounding boards, I decided to also eliminate Calvin's morning dose of THCA, replacing it with an equal amount of CBD in milligrams (the CBD oil has about half as much THC as my THCA oil).

The next day Calvin was cool as a cucumber and fell asleep as soon as his head hit the pillow. Today he is slightly agitated, though I'm fairly certain it's because he is constipated. I'll spare you the details, but suffice to say, we're working on that.

Eventually, I'd like to eliminate the THCA if we are lucky enough to see the Palmetto Harmony CBD do a decent job of decreasing his seizures; so far so good. Already, I feel totally liberated not having to give Calvin his afternoon dose, having to remember to draw it up and schedule activities around its administration. If we can eliminate it, I won't have to carve out two hours to to drive and get the herb, won't have to get a liquor license to order the organic cane alcohol I use to extract the cannabinoids, won't have to pay $125 for one gallon of the alcohol to be shipped from Oregon, won't have to spend a week making the oil, won't have to dose it, won't have to think about it. Best of all, if we can get Calvin off of the THCA I'll feel more confident taking Calvin on a plane with just his CBD, which is less of a risk, legally speaking. Perhaps we can travel again; it's been a part of forever since we flew anywhere as a family.

So cross your fingers and knock on wood ... again. And though praying is not my thing, if it's yours, then feel free to pray we can escape this intolerable psychotic cycle we've been stuck in for years.

Antiepileptic drug agitation, 2011.

9.14.2018

changeling

There goes my kid again—manic, shrieking, flailing, tossing his head back and forth, dropping down, drooling, rashy, agitated, spacey, fingering like mad, unrecognizable to me in so many ways. In my darkest, rawest moments of cumulative sleep deprivation, frustration, despair and fatigue—and when Calvin behaves like this—I sometimes think about what a freak he can be, especially under the cloud of a looming seizure.

Before dawn, my hand resting on his pounding heart, my little imp drifts back to sleep after his fit. My mind wanders. I think about our dear friend who took his life late last month; I wonder what misery plagued him. I remember the videos of Calvin in which he was calm and smiling, sitting quietly paging through his favorite board book, walking with his arms at his sides instead of circling wildly above his head. I revisit Michael's essay about changelings—children who, in medieval lore, were considered freaks having been born with mysterious diseases, cognitive or physical defects. The changelings' curious and abhorrent afflictions were blamed on being the offspring of faeries or trolls who were switched for healthy children at birth. Many of these changelings, too burdensome for their families to care for, perished in rivers.

Our boy Calvin, like the changeling, is certainly an enigma. We'll never know who or what or how he might have been had he been born with a healthy brain, had he never developed epilepsy, had he never taken ten antiepileptic medications, plus drugs for constipation, drugs for reflux, drugs for sleep, drugs for his gut. All I know is that he, a pubescent teen, is in many ways stuck somewhere between infancy and toddlerhood. I see his peers ride past on their bikes; it won't be long before they'll be driving. They play in bands, compete in sports, act in plays, learn foreign languages, read novels, write papers, consider politics and explore the stars. If they haven't already, they will hold hands and kiss sweethearts. In just a few years, they will be awarded their diplomas, will go off to college, perhaps travel the world, take care of themselves. Our changeling will remain here with us doing the same infantile, rote things he's been doing since he was two ... and likely seizing. And though it's painful every time I try to picture Calvin doing amazing yet ordinary things—even having a simple conversation or walking in the woods with me—I can't stop myself from imagining.

As Calvin recovered from this morning's grand mal, Michael shared with me a presentation he'll be giving today at the college. One of the first slides includes a quote from Diane Arbus who was photographing changelings in the mid 1960s before she took her own life:

There's a quality of legend about freaks. Like a person in a fairy tale who stops you and demands that you answer a riddle. Most people go through life dreading they'll have a traumatic experience. Freaks were born with their trauma. They've already passed their test in life. They're aristocrats.

As I mused on her words and studied her photos of children and adults with serious afflictions, I saw in them—in their remarkable faces, expressions and peculiar postures—their utter humanity. I regard my boy and see the same thing in him. He's my little changeling, and somewhere inside his shell of tension, anguish and pain, is a boy who emerges as the best of any of us—warm, sweet, unassuming, loving, uncritical, faultless, pure and unmistakably human.


Photos by Michael Kolster