intimate decisions (american dystopia)

I've been pregnant twice. My sweet, pure, legally blind, nonverbal, incontinent, autistic, cognitively impaired, seizure-plagued son, Calvin, is my only child. At least three of my friends who were in committed relationships when their contraception failed were able to get safe, legal abortions after discussing the intimate decision with their partners. One of them was the mother of two, another went on to have two children, and the third remains child free. I'm not pro-abortion and I've never had one, but after suffering the miscarriage, I underwent a D and C. My only worry was that, because of my age, I might not get pregnant again. That worry was shortly replaced by a wholly different kind of worry: Calvin, my little apogee and abyss.

The recent Supreme Court reversal of Roe vs. Wade, which has eliminated Americans' constitutional right to abortion—aka body autonomy and reproductive freedom—is as astonishing as it disturbing. It serves as evidence of the Conservative majority's callousness, ignorance, and chauvinism.

Callousness—for the blatant disregard of the physical and emotional harm millions of girls, women and their families will suffer when they are forced to carry unplanned, unwanted or medically problematic pregnancies to term. Women and girls will die without access to safe abortion. They'll die in childbirth itself. When they have dangerous complications from miscarriages and stillbirths, they'll die foregoing access to medical care for fear they'll be suspected of attempting to abort in states that have banned the practice. Black girls and women, whose rates of maternal death are three to four times higher than whites, will disproportionately face the most dangers, as will poor people and other people of color. How are these circumstances not examples of depriving women and girls of their constitutional right to pursue life, liberty and happiness? Despite these lethal risks, anti-abortion advocates claim this decision is somehow pro-life. Moreover, anti-abortion advocates tend to oppose measures known to greatly reduce abortions such as easy access to contraception and comprehensive sex education, and social programs such as universal healthcare, paid family leave, childcare, universal pre-k and other programs aimed to help mothers and fathers avoid the financial and logistical hardship of raising children. It sickens and pains me to see and hear them celebrating this decision, this most recent version of American dystopia.

Willful ignorance—for the apparent refusal to seriously consider and truly understand—or care about—the infinite and deeply intimate reasons why millions of women and girls might want or need to have abortions: complications such as ectopic pregnancies, fetal abnormalities, extreme youth or advanced age, family size, financial woes, career aspirations, rape, abusive relationships, health of the fetus or the mother, or simply that they don't want children. Forcing women and girls to unwillingly carry their pregnancies to term is tantamount to torture. But these facts don't matter to a sanctimonious, sexist court which has relied on precedent from a century-and-a-half ago when women were not equal participants in society or government and were barred from voting; Alito cited in his draft decision an English jurist who defended marital rape and had women executed for “witchcraft.”

Chauvinism—for holding the erroneous, absurd and sexist notion that half of all Americans don't have a fundamental right to control their own bodies and destinies. As some wise woman said, if men could get pregnant, abortion would be a sacrament. Chauvinism—for the way the decision hastens our nation to a place of (worse) female subjugation and punishment. Chauvinism—for the way the decision thrusts us into an American dystopia where surgical abortions will again be clandestine, will again result in rape, and will again be dangerous and lethal. Again, women and girls forced to carry pregnancies to term will be unjustly denied their constitutional right to life, liberty and the pursuit of happiness.

The Conservative Justices have scapegoated and punished girls and women by imposing their fundamentalist, patriarchal, religious and sexist agendas on them, ones to which a growing number of Americans—including some religious people—do not prescribe. The Justices used the absurd originalist argument that, because there is no explicit mention of abortion in the Constitution, women are not guaranteed access to it in their pursuit of liberty. It's worth noting that there is no explicit mention in the Constitution giving men the right to impregnate girls and women.

You know you're living in an American dystopia: when the rights of an eleven-year-old rape victim matter less than the zygote, embryo or fetus inside her resulting from that rape; when a government entity—particularly one made up mostly of conservative religious white men—attempts to control women's and girl's bodies by forcing them to carry pregnancies to term risking dire physical and emotional health outcomes, particularly in a nation that has one of the worst maternal mortality rates in the developed world; when imaginary lines drawn on a map of a nation where white colonialists slaughtered indigenous people and stole their land is what determines whether girls and women become the mothers to their rapists' children. Note: beware the anti-abortion push for a federal ban on abortion; if republicans gain control of congress this November, we'll be one step closer to that dystopia.

Our sweet boy Calvin, who I chose to have despite knowing he was missing most of the white matter in his brain, has made life for us very difficult and harrowing at times. I can't say for certain what I'd have done had we known earlier and for certain that things would turn out this way and that Calvin would suffer so. What I do know is that I wouldn't think of making that kind of deeply intimate decision for someone else. When our bodies are not our own to control, when legislators regulate them like commodities, we live in tyranny—an American dystopia—where, one by one, our other rights are at risk of being whittled away by a small group of powerful, callous, willfully ignorant and chauvinistic people who will never choose to hear our stories or walk even a few steps in our shoes.

Back when I was pregnant with Calvin, yet still child-free.
Photo by Michael Kolster

on guns and gutlessness

Because of someone's negligence, my child fell at school and broke his hip. It caused him excruciating pain. He had to have surgery. His supple thigh was cut open. His muscles splayed. The pieces of his broken femur were set in place, drilled and fixed with screws. He was stitched up and bandaged. My son spent five weeks mostly in bed recovering. His fall could and should have been prevented. Even so, I'm grateful that my child is healing and smiling and walking again. More to the point, my child is alive and kicking unlike the victims of countless mass shootings. I grieve for them.

What the hell is wrong with this nation? This place of so-called rugged individualists ("so-called" because exactly no one achieves anything by themselves) who think their right to own and brandish (or conceal) guns—even high-capacity assault weapons—eclipses the rights of others to keep themselves and their children safe from harm in public spaces and in homes. What the hell is wrong with these so-called leaders ("so-called" because they don't lead if it risks crossing the NRA)? Instead, in the shadow of these tragedies they deflect and deny any notion that guns are a main source of the problem. What is it about the Second Amendment's words, "A well-regulated militia" that these cowardly, power-hungry fetishists don't understand? Originalists be damned for your hypocrisy. Where did some Americans' selfishly reckless "me, me, me" and "eff your feelings" attitudes come from? Ignorance? Hate? Narcissism? Entitlement? Fear of becoming obsolete? All of the above? There have been so many lives lost to Covid and guns, but it didn't—doesn't—have to be this way. The spurning of common sense gun safety legislation is outrageous. Unforgivable, really. Lives could have been and can be saved.

When I consider the grieving parents of the murdered children, I think of Walt Whitman's, Vigil Strange I Kept On the Field One Night, in which he writes about a father's vigil for his fallen soldier son who, as he describes, was "a boy of responding kisses, (never again on earth responding.)" I read that one little girl at Robb Elementary School was brave and resourceful enough to smear herself with her dead friend's blood so she'd appear dead to the shooter. Compare her courageous actions to conservative legislators who, despite these grisly scenes which have become so frequent, are paralyzed by their gutlessness and greed.

I mourn for the families and friends of children and adults gunned down in schools, theaters, concert venues, grocers, places of worship. It's painfully clear that thoughts and prayers do nothing to stop the carnage. Neither, it seems, do the 393 million guns Americans hoard with the false notion they are somehow safer owning one (or more) despite the studies showing that owning guns increases risk of harm or death. And, there is no merciful god to step in and stop the bloodshed. There's only nature, including human nature, which fails so miserably when fear, hate, greed and lust for power displace peace, love, understanding and brotherhood. It's sickening to watch legislators sit idly by and, in their flabby inaction, seem content to continue watching massacres happen. "Guns don't kill people," they exclaim. I'd like to hear them explain why guns are prohibited at the annual meeting of the NRA—evidence of their hypocrisy and deceit; they know it'd be dangerous. They have the blood of innocent children on their hands, a stain they can never wash away.

And so, at times like these, when mothers and fathers are grieving the senseless murder of their children, I think of my boy who is often out of sorts. My boy who regularly feels miserable. My boy who, like today, still seizes and in the wake of the attacks struggles to breathe. I've seen him look, too often, glassy-eyed and ashen as if the life had been snuffed out of him. But today he is here beside me, and for that I am most grateful; he is still a boy of responding kisses.

For the sake of our children, I hope folks do away with their guns and gutlessness, their unfounded, erroneous, harmful notions.

In the wake of this morning's seizure

red wine and adrenaline

her hair fell in wet, ropy waves over her shoulders. having just emerged from the water, she looked like a mermaid in the filtered gleam of a waxing moon. earlier, before sunset, a great blue heron had flown over. she said it was a good omen. so too, i thought, was the double rainbow which had arched in the northeastern sky from amid a bank of pines. 

we picnicked atop a slope overlooking an inlet. the smell of cut grass and cows drifted across our table. we splayed out a feast between us—baguette, homemade pesto, purple heirloom tomatoes, triple cream and goat cheeses, green olives, dry salami, salt. we drank red wine from clear plastic cups. exploring the nuance of everything, we talked about the pandemic, the variants and vaccines. we spoke of our children and about the saintliness of them. we laughed and chatted for hours, catching up on eighteen months of each other's news.

as the sun began to sink into a cloudy horizon, it glinted gold and silver. well sated, we left our provisions behind and, drinks in hand, began strolling around the nearby campground. we passed a man propped against his trailer singing and strumming his guitar. kids were riding bikes, playing tag and squealing. though dusk began to fall just as our path veered into the trees, we decided to keep going. as she stepped into the shady wood, the orange sun set her aflame. she was glowing.

the path led us down to a tiny lagoon where the pink clouds reflected in its pool. we continued on, passing more tents, trailers, cottages, and one yurt skirting the inlet. by the time we hit the dirt road near the farm, the sky had darkened and the rising moon shown through the clouds. we had walked nearly two miles. back at the picnic table, we gathered our things then tiptoed down the dewy hillside to put them in the car. our last stop was the wooden bridge spanning a narrow tidal inlet. she told me of her plan to jump from the little platform built on the back of the guard rail. she'd done it countless times before. years ago, i'd seen teens launch themselves from it on hot summer days. it looked to be about ten feet above the tide. in the ensuing darkness, the sun's warmth still radiating from the wooden planks and railings, she began undressing until she was just in her skivvies. in a blink, she leapt and disappeared into a froth.

upon surfacing, she exclaimed how magnificent the water felt, adding that it was not too cold at all. i trusted her. she wanted me to jump. only problem was that i was going cowboy (aka, commando, for you east-coast types) and two folks were approaching. but it was sufficiently dark, and she offered to shield me with her towel. i climbed over the railing, peeled off my shoes and socks, t-shirt and jeans until all i had on was my chambray bra, then i stepped to the edge. she assured me the water was deep enough to leap. i had every reason in the world to believe her, and i had leapt off of cliffs and bridges and diving platforms as high as thirty feet before.

flying through the air, crashing into the water, having it envelop me like a liquid glove, felt exhilarating. it had been years since i'd been in it. salt filled my mouth and stung my eyes, reminding me of summer vacations to pacific northwest beaches as a kid, and of body surfing at beaches in san francisco, hawaii, kenya, tanzania, and swimming in the waters off of turkey and brazil. the tide was strong, but not as strong as i, so it was easy making leeway to the rocky bank, which i then scrambled up, dripping with sea water.

back on the bridge, i toweled off as both of us smiled and giggled about our adventure. we walked barefoot to the car laughing so hard we could have wet our pants—that is, if we had any on!

on the drive home, windows open to the sultry air, we splashed through puddles from an earlier rainstorm which had completely missed us. the white eyes of a baby raccoon peered into our headlights from the shoulder, and a tiny frog leaped across the road. i was smiling inside and out. it had been one of the nicest evenings in recent memory, if not my entire life—a magical one, really. for the most part, i'd forgotten about calvin and his (our) miseries. forgotten about imposed limitations. forgotten about stresses and pandemics. and as we hugged goodbye, the afterglow of red wine and adrenaline still pulsing in our veins, we promised to do it again.

different vistas

Driving along winding roads, I reach behind the passenger seat. My son grabs my hand. His is soft and small. Mine, thin-skinned and wrinkled. When I tickle his fingers he smiles, head back, mouth open. Nearly seventeen years ago those fingers were translucent, adorned with tissue-thin nails smaller than seeds on a bagel. Between his teeth he works on the floppy ear of a crocheted rabbit. By now, it's sopping. He has taken off one shoe and one sock, chewed on them too.

We drive like this for the better part of an hour on the same familiar roads. From behind the wheel I feed him blueberries, halves of grapes, segments of clementines and chunks of cheese and chicken sausage. I watch him in the rear view mirror to ensure he chews each piece well. We stop every so often so I can photograph panoramas of the fields, the pines, the water beyond. I wish I could pull to the shoulder, abandon the car, escape my son and even the dog and get lost in the meadows by myself for hours. Maybe I'd lie in the snow and study the clouds. Perhaps I'd get to the the water's edge, perch myself on a rock and melt into the vista.

It has been nearly ten months of mostly back-to-back days with Calvin while Michael is working. Some days can be as long as nine hours. How many more months will this be our routine? When will we be able to get the vaccine? Despite certain hardships, frustrations and limitations, we are keeping our heads above water. Michael has a paying job so I don't have to work (outside of caring for our son.) Michael does all of the shopping and cooking and most of the laundry. Calvin both buouys and sinks me with his want, and so I bob. Last month, he went twenty-two days without any seizures. Then one came six days later and two six days after that—a different kind of vista. Still, we have so much to be grateful for—shelter, heat, clothes, food, so many creature comforts.

On the drive, I look out at the silvery sky and pines dusted with snow and think about my pen pal who is on death row. I doubt he's seen a tree in years. I wonder what his vista is. In letters, he tells me he prays for Calvin. He says he is busy despite spending twenty-three hours a day in a tiny cell. He speaks of waking up every morning in Hell. He mentions how cold it is until they stretch plastic over the windows. He says he's seen more people die in prison than in the Freeworld. He fights to stay strong. He writes me lines from a favorite song.

My heart been broke so many times, I don't know what to believe. Granny said it's my fault, it's my fault I wear my heart on my sleeve. So I think it's best I put my heart on ice, heart on ice because I can't breathe. I'm gone put my heart on ice, give you the best of me.

On the drive home, I think of my childhood friend and neighbor whose autistic son, the twin of a neuro-typical sister, died unexpectedly last summer. Like Calvin, he was nonverbal and loved everyone unconditionally. Then, I think about my friend's little girl, so much like Calvin, seizures and all, who died last March from complications of Covid. I think about my friend's daughter who overdosed on opioids. Why do I know so many parents of supple children—Lily, Rose, Rainier, Kari, Jennifer, Katie, Kellie, Mike, Ross, Mikki, Martin, Cyndimae, Charlotte, August, Arnd, Kevin, Ronan, Elisef, Andrew—who perished?

Coming up a rise to a bend in the road, a gorgeous and familiar view emerges: a rolling hillside above a salt marsh wading into the water. The sun, shrouded by clouds, makes the whole sky glow. As we round the bend, the vista disappears behind suburban homes. I wonder who lives there. Wonder if they have kids. I wonder how it feels to lose a child—to illness, to accident, to epilepsy, to drugs, to suicide, to prison. Though the vista, now behind us, is a clear shot from the car, I wonder if Calvin sees it, can make sense of it, recalls it as one we've passed by nearly every day in this pandemic. I wonder what kinds of vistas—if any—are ones he loves. I will never know.

a different vista

vigil strange i kept on the field one night

Every Memorial Day I post this poem by Walt Whitman, and every year I think of those who have lost loved ones prematurely and senselessly. This year, along with honoring and remembering those lost to war, I mourn the nearly 100,000 Americans who have died from coronavirus, many of whom—in a better world—could have been spared.

Vigil strange I kept on the field one night;
When you my son and my comrade dropt at my side that day,
One look I but gave which your dear eyes return'd with a look I shall never forget,
One touch of your hand to mine O boy, reach'd up as you lay on the ground,
Then onward I sped in the battle, the even-contested battle,
Till late in the night reliev'd to the place at last again I made my way,
Found you in death so cold dear comrade, found your body son of responding kisses,
(never again on earth responding,)
Bared your face in the starlight, curious the scene, cool blew the moderate night-wind,
Long there and then in vigil I stood, dimly around me the battle-field spreading,
Vigil wondrous and vigil sweet there in the fragrant silent night,
But not a tear fell, not even a long-drawn sigh, long, long I gazed,
Then on the earth partially reclining sat by your side leaning my chin in my hands,
Passing sweet hours, immortal and mystic hours with you dearest comrade—not a tear,
not a word,
Vigil of silence, love and death, vigil for you my son and my soldier,
As onward silently stars aloft, eastward new ones upward stole,
Vigil final for you brave boy, (I could not save you, swift was your death,
I faithfully loved you and cared for you living, I think we shall surely meet again,)
Till at latest lingering of the night, indeed just as the dawn appear'd,
My comrade I wrapt in his blanket, envelop'd well his form,
Folded the blanket well, tucking it carefully over head and carefully under feet,
And there and then and bathed by the rising sun, my son in his grave, in his rude-dug
grave I deposited,
Ending my vigil strange with that, vigil of night and battle-field dim,
Vigil for boy of responding kisses, (never again on earth responding,)
Vigil for comrade swiftly slain, vigil I never forget, how as day brighten'd,
I rose from the chill ground and folded my soldier well in his blanket,
And buried him where he fell. 

—Walt Whitman

Confederate dead, Chancellorsville

weight of the world

Saturday night, I listened to my son wail until he was nearly hoarse. I watched him writhe in some unknown pain. The event, whether cramps, hallucinations, night terrors, or most likely migraine, went on for five hours. None of the measures I attempted—acetaminophen, ibuprofen, THCA oil, CBD—helped to quell his misery.

Downstairs, our dinner guests kept me sane with their loving support through a difficult situation. Hell, we even had some laughs in-between sips of wine, bites of Michael's melt-in-your-mouth porchetta, mashers, green beans, and hearing Calvin shriek. It didn't help for me to remain upstairs with my boy; he's getting big, so someone's liable get hurt if I were to crawl into bed with him, though I did make one failed attempt. Luckily, he's safe in his padded, paneled, netted-canopy bed, able to flop around into positions most comfortable for him. At one point, during my frequent checks on him, he had drifted off briefly while sitting up.

Calvin finally fell asleep close to eleven. Regrettably, three hours later he had a grand mal followed by another one at six a.m. I can't remember the last time he had three serious events in less than twelve hours. He had been doing pretty well lately.

As I laid next to Calvin in the wake of his first seizure, I wondered if perhaps he feels viscerally the weight of the world, causing him anguish or triggering seizures. I thought of the damage our reckless president is doing to the already volatile Middle East. I feared for the animals and people in peril from Australia's rampant wildfires. I worried over a friend who is suffering from late-stage cancer and the side effect from its heinous treatments. I fretted over recent hard conversations with a dear friend regarding prejudice, judgment, the virtues of political correctness, and the hurt felt by both of us. I wondered if Calvin could feel me.

Then, after spending too much time brooding in bed next to my son, I remembered a girl I had met at the grocer earlier in the day. A thin, blond, sweet seventh grader, she had smiled shyly and waved, saying, "Hi Calvin," as we passed her in front of the cold cut case. Holding onto Calvin's hand, I stopped to return her greeting, introducing myself to her father. She explained having met Calvin last year while visiting his junior high school's Life Skills class where she made friends with another student very much like our boy. It dawned on me who she was and that, a few weeks earlier, I had met her mother and another woman who had come to our door sharing info about Jehovah's Witnesses. At first, I'd been a bit sharp with them; because of Calvin, I'm prone to growl whenever anyone tells me that "everything happens for a reason."

"I am not worthy of my son's suffering," I declared to the proselytizers, my heart pounding with contempt for any suggestion that Calvin's misery is some divine plan, a notion which to me seems no less than sadistic. I went on to explain my disdain for organized religion, my disbelief of a merciful or judgmental, anthropomorphized god, stressing my conviction that the Bible is metaphor written by men to explain the unexplainable and to further their power and control over others.

The Jehovah's Witnesses had been kind and forgiving, respectful of my beliefs. I went on to let them in and led them upstairs to meet Calvin, who was in bed resting. There, we exchanged ideas about god, the afterlife, and hell on Earth. Some of our beliefs seemed to overlap. They were loving to Calvin and most sympathetic to our burden. It was a short visit, and as they were leaving I gave them both hugs, plus my card, which has a photo of me and Calvin printed on one side and my blog and email addresses on the other. Two days later, one of them wrote to me, explaining the discovery that her daughter knew Calvin.

Back at the grocer, I said farewell to the girl. I thanked her for being so kind to Calvin and for making and keeping friends with his former classmate, who is non-verbal, developmentally delayed and seizure-prone, just like Calvin.

"You're going to save the world," I told the girl, firmly believing in my assertion that this gentle creature standing before me in boots and a little overcoat, this old soul with wavy blond locks swept back into a bundle, doesn't have a mean bone in her body and loves everyone, just like Calvin.

Lying next to Calvin that night after his miserable pain episode and first of two seizures, and holding the images in my mind of the girl's rosy face and that of her mother's, I drifted off to sleep with the weight of the world—Calvin—in my embrace.

Years ago, photo by Michael Kolster

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

coming home

I was going to write about hiking from Penn Station to Rockefeller Center and into Central Park, then partway back, tugging my mini crimson roller bag over sidewalks and cobblestones. I was going to describe imbibing wine and nibbling exquisite fingerling potatoes at the Tavern on the Green patio bar with Jaimie, both of us dreaming of all that was and could be. I was going to gush over my lovely and generous hosts, Antoinette, Leo and Ivano Pulito, and the stellar meals I enjoyed at their Tribeca restaurant, Petrarca—melt-in-your-mouth eggplant Parmesan, potato gnocchi with pesto, creamy burrata, ricotta gnocchi scattered with shavings of summer truffles, Aperol and Prosecco Spritz, vino and cappuccino. If you live in Manhattan, you must dine there; tell them I sent you.

I was going to detail finally meeting a mutual friend of our young beloved who took his life last summer, mention holding her hand and weeping as we grieved and shared stories of him, our lost and sorely-missed brother. Thank you Meredith.

I was going to write about rooftop bars, boutique clothes, and enormous gourmet Italian food stores, skyscrapers, ambulances, lovely spring weather, spent petals falling like snow, and sudden downpours. I was going to tell about boxer puppies and sassy cats, cousins and sons, dear old homies from my Levi's days, and tweenage baseball games in Brooklyn's Prospect Park. I was going to rhapsodize about a sweet, thoughtful, brown-eyed eleven-year-old boy who shared his parents, pets and home with me, and who made me a perfectly strong coffee with cream, and a sublime strawberrry-banana-walnut breakfast salad with cinnamon sugar and Greek yogurt. I was going to tell of subways and schnitzel, annoyingly boisterous drunken white bros, and all the sights, sounds and aromas which make up splendid New York and its boroughs.

Instead, I feel compelled to tell you about the rare way Calvin greeted me when I came home from my long weekend away. My non-verbal, epileptic, autistic, incontinent, legally blind fifteen-year-old boy had spiraled into his agitated late-afternoon "ooh-oohs," feverishly spinning on the floor while working his arms, hands and fingers into a frenzy. I swept him up into my lap on the green couch and, to my delight and surprise, he hugged me tighter than I can remember. We remained in each other's arms for what seemed like a part of forever. Michael and Mary looked on in some amazement at his prolonged and calm embracing. I rubbed Calvin's back and told him how much I missed him. At least twice he kissed my nose—his mouth slightly open—then smiled when I tickled and smooched his neck, and told him that I loved him. Perhaps he knew—even if just viscerally—I had been gone for several days and now was home.

One World Trade Center (Freedom Tower) as seen from my host's back patio.

college nostalgia, sweet spots, pity eclipses, etc.

For a couple of hours last evening I was taken back to my college days, to a sweet, off-campus house shared by five students, complete with a shabby, yellow, vintage sofa and rooms decked out with second-hand tables and chairs. Our host let me peruse the second floor where, at the top of a steep, carpeted, slightly askew staircase, I peered into the dimness of a few rooms, their beds and floors endearingly strewn with piles of clothes like so many college students are wont to do.

Back in the kitchen, I cracked open a bottle of Côtes du Rhône and filled four stemless wine glasses, two of them plastic. We toasted our hosts, Ben and Meghan, wishing them well in the final few weeks of their senior year. We got their takes on life in Michael's photography classes, plus updates on their current projects. They told us of their post-graduation plans and dreams, including moving to Boston, of having turned down lucrative job offers that didn't speak to their hearts, and of their desire to live near new and old friends. They explained the dating app they've been designing, how it works, and shared with us its clever name, logo and marketing campaign.

It felt good to be sitting around a table with such bright, curious and engaged youth, felt good to be in an apartment that looked, smelled and vibrated so much like the ones I shared with my college roommates thirty-five years ago. And though I was delighted to be in the company of these generous souls who perfectly seared a huge filet mignon and tossed a tasty organic green bean and tomato salad, I was keenly aware of the pinch and sting I felt knowing I'd never be doing such things with my own child. Thankfully, however, the joy of communing with these happy, energetic, optimistic individuals eclipsed any pity I might've felt for myself. I left hoping they'd keep in touch and visit us from time to time like a few other beloved former students—Arnd, Ivano, Emma—did and have done over the years.

Back at home with our fifteen-year-old son who can't speak, wears diapers, still drinks from a sippy-cup, plays with chew toys, and is prone to seize, we are celebrating his own triumphs: Calvin has suffered only one seizure this month, and it was not a grand mal. He has had only three grand mals in the past thirty days, plus just three complex partial ones. And though I shouldn't get ahead of myself, if April keeps trending this well, it could be his best month seizure-wise in four or five years, despite taking only one pharmaceutical. I'm owing this success to having significantly reduced his Palmetto Harmony CBD oil from about five milligrams per kilogram of his weight down to about two mgs/kg, a strategy for success (finding its sweet spot) that its maker and many other parents attest to.

And so today, in the happy afterglow of last night's gathering, and during a day in which my own boy is doing quite well, I'm hoping good things for the Bowdoin College seniors who are about to inherit—and no doubt change for the better and for the common good—our crazy, effed-up world.

alive and loved

It had been years since I dined with the neighbor-mother of a boy whose due date was within a week or so of Calvin's. However, Calvin, now fifteen, came into the world six weeks early, and from then on the trajectory of our sons' lives would forever be diametrically opposed.

Kathy and I sat in a corner table near the bar sipping beet yuzu martinis and wielding chopsticks to munch a shaved-cabbage, pea shoot, crispy-shallot, and roasted-peanut Asian slaw. My friend ordered pan-fried vegetarian dumplings. I got the ones with pork. We caught up a bit on our and our husbands' recent endeavors and shared worries about our children. We laughed and chatted with a friend seated next to us whose daughter, also fifteen, is in the wonderful thralls of what it means to be a teenager, just like my dinner-date's son.

I find myself hungry for stories of other people's kids even though they often trigger a bittersweet sting. My love for kids—their silliness and wit, their quirkiness and crazy antics, their world curiosity, fearlessness and old-soulness—is largely unquenched because mine is nonverbal and incapable of learning and doing so many of the most basic things. My child is just becoming proficient at riding a trike on smooth, indoor floors, while his peers are playing soccer and lacrosse outdoors. My child is still being spoon-fed diced, minced and pureed foods, while his peers can make their own snack foods. My child is relating mostly with adults—teachers, ed techs, nurses, while his peers are hanging out together and are beginning to show interest in having sweethearts. My child is still playing with chew toys, while his peers are likely already beginning to think about college.

Kristi, the woman seated next to us who I don't know very well, told me that she reads every one of my blog posts. She (needlessly) apologized for having not responded to any of them in written form. She wanted me to know how important she thinks my blog is for others. She went on to say that she even shares it with her children, encouraging them to think outside of themselves and into of the lives of others. I was most humbled by, and grateful for, her affectionate show of appreciation for what has become for me such a labor of love.

While Kathy and I drank and dined, a handful of Bowdoin College English professors filed in slowly and were seated at a nearby table. Three of them—Ann, Marilyn and Aaron—who are dear to me and whom I don't see nearly often enough, came over to visit briefly and to give me big hugs. Throughout my years of living in Maine, they've all been a source of strength, love and damn good humor.

When our drinks were empty and our bellies were full, we got the bill and Kathy kindly paid for our meal. Upon leaving, I gave each of my friends one more hug. As we left the cozy indoors, we were greeted by a cool and invigorating April breeze. I remembered what I'd said to Kristi before we were served our meal: March, which was so full of seizures, had been hellish for Calvin and me. But last night, having begun a new spring month, I left the restaurant feeling new and alive, loved and buttressed by so many kind, compassionate, generous, and wicked-smart people, many of whom are still kids at heart. No wonder I like them so much.

Asian slaw

sleepless dreams, stardust and carbon

another sleepless night without real dreams. my son, every half hour sitting up in bed and banging. sometimes cackling. tonight doesn't look too good for us or him. hours later, about to drift to sleep. that's when the squirrels begin gnawing and scratching in the eaves. the sound is unsettling. michael pounds the walls hoping to disturb them. i pray calvin stays asleep. at three a.m., just after finally going under, i hear the scream. this time it's muffled and brief. still, i know its meaning: our son is seizing. we rush into his room. unhook his bed's netted canopy. let down the safety panel. protect his spasming head and wrists and feet. call his name trying to reach him in his seizure-dream. blood and saliva begin trickling from between his lips. when it's over, i gently nudge his mouth open to find the wound. a bitten tongue or cheek. a pool of blood lets loose a scarlet stream. i think of rivers rushing to the sea. i stroke his moonlike face with love and sorrow. then i slowly syringe cbd oil inside his opposite cheek.

before i crawl in with him, i drink a glass of water and pee. outside, it's crisp and black and in the teens. pinned in the sky behind the glass i see orion. i think of emily's little ronan, gone now for how long i don't remember. i used to see orion as his guard. perhaps he's out there in the stardust.

in bed with calvin. michael tucks in a pair of curled-up bodies. in my arms calvin goes to sleep. for me, shut-eye remains elusive. in darkness, i think of little charlotte who has influenza and is fighting off pneumonia—a grave danger for our fragile children. i send a little mojo off to colorado.

my thoughts tumble to our mate who died last august. in our care, he left behind stacks of plastic bins and cardboard boxes. clothes and tools, gloves and socks and shoes. in my sleepless dreams i'm back to sifting through them. a wide-brimmed hat with snaps attracts me. my head is swimming in its blackness. in search of him, i sink my nose into a dress shirt. it smells of soap and plastic. i find him nowhere in its cool soft fabric. it hurts to miss him. he was like a brother-son to me. he has returned to stardust. never again to feel pain or be sleepless. now he is beautiful carbon. he wore that color often. he chose it.

it's not long before my boy awakens. just as my sleepless mind is dreaming of our new year stroll beside the ocean. we were three, not counting calvin. in a perfect world he would have been there with us, skipping, running, tempting white waves crashing at his feet. sprinting up then boomeranging with some precious found thing. a rock. a shell. driftwood. a reed. i picture him making long shadows and sandcastles and scraping his name into the beach—as many grains of sand as stars and planets. but he cannot do those things. instead again he stayed at home, his brain planning its next assault on him. i can smell impending seizures on his breath and fingers, on his drool-soaked shirts and robe. still, we can't escape their orbit. my billion-year-old carbon child, though reeling through his life half-blind with seizures, is not yet stardust. he's there at home to greet us. i hold him closely. i dream of calvin even when i'm sleepless.

in the sparkling stars

When thirty-five degrees feels balmy, it's a sign one might live in the northern hinterlands, where at five o'clock a long-set sun lights up a mackerel horizon.

On our way to the fields, Nellie and I stop by Woody's just to see if he's all right. I ring the bell and through the window see his cat Norton scamper by. Once inside, I give Woody a hug and on its heels my usual grilling: What's for dinner? Any news to report? Are you out of dessert? Does your rib still hurt? A few weeks ago Woody, who turned eighty-six last July, stood up too fast, became dizzy, fell into a desk and fractured a rib. He's doing okay now. I thank the stars for Woody.

After a short visit, Nellie and I continue to the fields where most of the snow has melted. Off leash, she races around nose to the ground, smelling scraps of student-athletes' food now thawed and rotting in the spongy sod. There's a hint of pine in the air, plus wafts of smoke from neighbors' chimneys settling over us like fog. Strings of colored lights have begun popping up on neighbors' trees and shrubs. I stand in the center of the field looking up. Above us, only a smattering of stars peek out between sparse clouds. As they twinkle, I think of Lily and Ronan and Cyndimae and Gordon and Arnd and so many others who have left this world far too young. Now, I see them in the sparkling stars. On our saunter home, I glimpse another octogenarian friend, Nan, through a gap in the fence around her house. Her face is aglow from what I think is a laptop, and I wonder if she feels lonely without her husband Bob there to take care of; he now lives in a nursing home. I miss greeting him in his driveway on nights like this, smelling his sweet pipe smoke as I approached. He'd always say, "Nan doesn't let me smoke inside anymore," then he'd chuckle as he took a puff.

Almost home, a crescent moon appears tangled in the canopy of a scraggly oak. I'm thankful the moon isn't full, since those seem to trigger seizures in my son. The thought of seizures brings to mind Jakelin Caal Maqin, the seven-year-old Guatemalan refugee who recently died in US custody. She had suffered seizures before she passed, having made the arduous journey with her father to our so-called Promised Land. I wonder if these refugees who walk at night navigate by stars. I wonder what led to her demise. I read of border patrol agents sabotaging humanitarian water stashes left in the desert to aid desperate, parched refugees. What kind of people do such things to fellow human beings? Cowards. Monsters. Fools.

I call Michael from my new dumb phone to tell him that I love him. I hear Calvin squealing in his arms. It's almost bedtime for our boy. Soon, we'll change his diaper and put him in flannel pajama pants and two clean long-sleeve shirts. We'll give him Keppra, cannabis oil and water. We'll brush his teeth, lift him into bed, tuck him in under a goose down cover and thick fleece throw. We'll stroke his hair and kiss him. He'll be warm and safe, dry and hydrated. No hiding under desert sagebrush in the wilds. No risk of thirst and hunger. No sleeping on concrete floors in cages. No sitting in filth with scores of others. No abuse, neglect or trickery from foreign strangers speaking English.

Where has our compassion as a nation gone? Our embrace of others? No doubt to dirty dogs.

As I step into the house, warm light and air pour over me. Once more I glimpse the sky before I close the door. I see Jakelin there among the sparkling stars.

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 to 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.

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

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

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

longest day

The longest day of the year was followed by one of the longest nights of the year for Calvin and for me and Michael.

A few hours after I had come home, giddy from attending my dear friend Lauren's annual summer solstice party, Calvin began to whimper and stir. I got up to give him his second dose of THCA cannabis oil having earlier expected an impending seizure. Within half an hour he was beginning to writhe, rub his head and cry. I gave him a tylenol, then when that didn't work, I managed to get him to swallow an ibuprofen. Despite my efforts to assuage his pain, he continued to thrash and cry and scream. In bed next to me, he pulled my hair, scratched my neck, pushed my throat, whacked my head, kicked my legs again and again and again. Somehow, I was able to maintain my composure as he flailed for two-and-a-half hours, promising him in whispers and kisses that he'd feel better soon and that I wouldn't leave him. 

It was then that I again thought about the Central American child refugees separated from their parents, some of them infants, others toddlers, left crying alone with no consolation, children who don't understand or speak English, don't understand why they've been marshaled away from their parents by strangers, children who might never be reunited with their momas and papas for weeks, months, years—if ever—the damage and suffering being done in haste by a president and his administration without a plan of action in place.

Yesterday, I heard an audio of young detained children, one of them crying "Papa!" repeatedly, until his/her little voice became hoarse. Hearing their cries made me weep.

Finally this morning, my boy calmed, though never went back to sleep. We eventually got him up, fed him some breakfast, packed his lunch and sent him off for his last day of school. A few hours after we had put him on the bus I got the dreaded call while paying for a special cake I was about to bring to his support staff at his school: Calvin was having a grand mal seizure. His ed tech's voice was trembling as she described how he had vomited during the seizure, fearing he might aspirate. I told them that I'd be there soon. 

On my way I stopped by home and quickly filled two syringes with cannabis oil. Thankfully, the junior high school is less than a mile away, so I was able to give him the oil within minutes of his seizure, a tactic I take aiming to prevent further seizures.

As Calvin slept, his teacher and aides sat with me in the dim Zen Den, named for its bean bag chair and strands of calm yellow lights strung on the walls. As we watched my boy sleep, I told them of past seizures, most notably the forty-five-minute grand mal he had when he was just two. I described how Michael and I had thought he might die that time since none of the emergency meds had appeared to be working, but that it had finally stopped when we began kissing on him.

After almost an hour's sleep on a spongy floor mat, Calvin stirred and awoke. I gave him his lunchtime Keppra, chasing it with a couple of sips of water, then picked him up and carried him out to the car to go home.

Now, as I sit at my desk writing, I can watch him spin in his industrial-strength johnny-jump-up. He is poking his eye, humming, and bubbling up foamy drool. My gut tells me he isn't out of the woods yet, and I wonder if I'll ever get my seizure-free boy back from where these sinister meds and fits took him years ago.

Then I think again of those innocent migrant children separated from their parents, every day their longest day, every night too, their lives likely ruined by the mistreatment this neighboring and prosperous nation has subjected them to. I wonder about the hundreds who have epilepsy (nearly one in one-hundred of us do), wonder how they will fare without their meds, wonder who will hold them when they seize, wipe the blood trickling out of their mouths from bitten tongues, wonder who will whisper away their fear, their pain and tears. I wonder how the reckless president sleeps at night, he who has told his citizenry legions upon legions of lies, the worst of which, perhaps, denies the real grief and suffering these children are having to endure. The potus (the guy is not deserving of all caps) may not sleep well, but he doesn't sleep on a mat or a cot with a mylar sheet under banks of cold florescent tubes in a cavernous, cement-floored, fenced-in holding cell. But I bet he sleeps alone.

And as I wrap this up, my sweet innocent boy rolls into another grand mal, but in the safety and love of his mother's arms in a place we call home.

Calvin after a seizure

freedom to move

I am you. —Anonymous

Never apologize for being human. —James, Florida

We love you and feel your long days and sleepless nights. —Barbara

Be well and know I do not send prayers, I send Sistah Strength from my tiny little heart to yours. —Tammy, Virgin Islands

I'm pretty sure I wouldn't even like anyone who would win a Miss Congeniality contest. —Lorry, Maine

Thank you for being real. —Nancy

These were just some of the thoughtful responses to my last blog post titled, my apologies. Several readers couldn't make sense of why I penned such sentiments to the world. The letter of apology was a version of one I had written to a few individuals at Calvin's school, expressing regret for some sleep-deprived, emotionally-spent irritability I had displayed, in part because of a newly installed, apparently malfunctioning security-door system at Calvin's school meant to limit access, ostensibly of any potential school shooters.

Last Wednesday, I'd taken Calvin to school a couple of hours late after he had suffered his now-weekly grand mal seizure at three the same morning. In my exhaustion, having not slept since then, I was easily vexed after finding out the junior high's new entry button didn't seem to be working. Frustrated, Calvin and I had to wait outside in the cold, unnoticed (Calvin is not the greatest at standing still; because of the epilepsy drugs, his body needs to move.) When I was informed that I was, purportedly, the only one having a problem with the system, I became further irritated. Then, when a kind and well-intentioned person suggested she show me how to press the button correctly (it's pretty darn straight forward; it's a button ... you press it) I grew more perturbed. These events—the seizure, the sleep deprivation, the button glitch—were probably what pushed me over the edge of congeniality. Having already been distressed by the recent papering-over of the nice large windows in Calvin's street-side classroom, I went on to lament the tragedy that some boys and men in this nation are troubled to the point that they shoot up churchgoers and schoolchildren. In my mind, what makes matters worse is the notion that teachers be armed, an idea promoted mostly by those with a twisted interpretation of the Second Amendment—that we all have a right to own semiautomatic weapons, high-speed and armor-piercing ammunition—and those who think the answer to more gun injuries and deaths is to have more guns.

At a dinner with friends on Saturday night I shared my frustration about the papering-over of Calvin's classroom windows. I stressed the fact that our kids don't get enough of the outdoors, much less having the sight of trees and sky blocked out at school. Besides, the vast majority of children who are hurt and killed by guns, I learned recently, are not shot in school massacres. Papering over their windows, in my mind, is akin to letting these terrorists and would-be terrorists win; Parisians and Barcelonians don't avoid going to markets, cafes and concerts in the wake of mass shootings, because they want to deprive terrorists of the power to curb their freedom to move.

The image of countless armed guards and gun-packing teachers, and the papering over of school windows brings to mind prisons. Will we do away with outdoor recess for elementary school kids, too? What happens when guns discharge in the classroom accidentally? We all know they do. What if an armed school teacher feels "threatened" by a student? I've no doubt that the presence of more guns in schools will lead to senseless harm and death, predominantly of children of color. One must simply look at statistics, at the legions of Black schoolchildren who are disproportionately and more harshly punished than others, and at the scores of unarmed and innocent Black men, women and children who are gunned down by police while their armed White countrymen are handled with kid gloves; we know that too many White folks, whether consciously or not, wrongly see Black people—even children—as bad, dangerous and criminal.

I think back to those moments at Calvin's school, to when I was called back in because his ed-techs thought he might have suffered a partial complex seizure, to when the principal kindly re-introduced himself to a haggard, exasperated me, to when the door alarm problem was deemed mine to own. In the wake of the events, I wish we didn't have the tendency to jump to conclusions. I wish we weren't driven by fear. I wish there weren't fearmongers and liars and gluttons and powermongers, misogynists, bigots, bullies, despots and creeps to prey upon our goodness and our failings. I wish teachers were equipped with higher salaries, with adequate supplies, and with smaller classes to address the needs of neglected students who might otherwise want to do harm.

I saw a meme recently, one that cleverly and simply debunks the favorite gun-rights' argument, "guns don't kill people; people kill people." The meme reads:

If guns don't kill people, they don't protect people either.

Makes complete sense to me.

I hope people begin to understand the statistically significant fact that they and their loved ones are less safe in homes where guns are kept. I hope folks turn in their guns so we can melt them down. I hope soon we can tear down the brown paper that makes walls out of windows and prisons out of our children's schools. My son already lives in a prison of body and mind that limits his, and our, precious freedom to move.

Learn some facts about school shootings here.

Photo by Michael Kolster

changes

It couldn't have been clearer to me that Calvin would have a seizure by this morning. In his own way, he tells me. I just have to watch and listen. Yesterday, he showed nearly all of the usual, and some not-as-usual, harbingers: bloody nose, whininess, major finger snapping and other repetitive behaviors, pacing, warm hands, uber-rashy butt, agitation, restlessness, intensity, detachment.

At five a.m. it came. Perhaps the extra doses of concentrated THCA cannabis oil just past midnight and at three o'clock impeded its arrival. As I spooned with him after the seizure, I felt how calm his body was, noting the absence of what I call aftershocks—shivering and shudders which often occur in the wake of grand mal seizures. I had no doubt THCA had something to do with his serenity.

Mostly awake since three and therefore exhausted, I still had a hard time relaxing my mind. Lying there, again I considered the world. I feel it going through its own convulsions, having more than its share of anger, hatred and greed, its racists, abusers, tyrants and liars bent on destroying humanity at nearly any cost, lusting for power through intrigue, attempting to avoid capture. What drives these men to such extremes, these gun-toting terrorists, abusers, trolls and bots, these conspiracy theorists, these despots and deceitful oligarchs? Meanwhile, in my arms lies one of the purest souls on earth, a boy who inspires love and compassion, requires my mindfulness and who, though he tries my patience at times, makes me want to live simply and be a better person every day.

Yesterday, when reading about the Marjory Stoneman Douglas high school students traveling to the Florida state capital to express their desire for the legislature to pass stricter gun control laws, I thought about Calvin. I imagined him being crammed into a closet with twenty others his age, little room to breathe, waiting silently for ninety minutes until the shooter fled the scene. I imagined Calvin—if he were a typical kid—fearing for his life, texting us, being riddled with bullets or sobbing when finally set free. I imagine him, later, boarding a bus with his classmates to march on state capitals and Washington DC demanding changes to gun policy. He'd be that kid. He'd change the world. No doubt he has, in his own way, inspired such things in others and in me.

A former teacher—one who has never met Calvin nor could comprehend the depth of his disability, who had no children of his own much less a non-verbal, incontinent, uncoordinated, delayed, epileptic one—once asked me why I named my blog Calvin's Story, or rather, why I didn't write more often from my son's perspective since it bears his name. I recall being slightly irked and thinking, perhaps even saying to him, that Calvin informs my world, and since he lacks the ability to speak, I must lend my voice to tell his story—which, because we are so inextricably linked, is ours—the one he might have told if he had been born normal. In short, I have to dream. I revisit that question from time to time, checking in with myself to ensure I am doing justice to Calvin's unusual and complicated childhood experience, exploring notions of my own with regard to him hoping I can extract some meaning from it—which is not to say I am searching for answers as to why he was born so afflicted. (Shit just happens, with no inherent reason, no purpose. Prayers prove useless, the absence of God in schools a lame excuse for mass shootings; pedophile priests still lurk in churches.)

This morning, I considered our children's truths and stories as told by themselves and their parents when I heard a former GOP congressman expressing doubt that the teenagers organizing a nationwide rally against guns—thinking the students incapable because of their youth—are doing so of their own volition. Instead, he suggested that they are mere pawns of leftist organizations. Clearly the response was from someone too detached to understand young, informed, impassioned minds, or too partisan, ignorant or cowardly to think, appear or admit otherwise. His lame statement led me to recall the David Bowie lyric I read yesterday from his song Changes:

And these children that you spit on, as they try to change their worlds, are immune to your consultations, they're quite aware of what they're going through.

I went on to ponder the right-wing conspiracy theorists who've shamefully suggested that the Florida school shooting, along with the Sandy Hook massacre, was a government ruse and that the students are actors. I wonder what in the hell these losers, jerks and trolls want to do to the virtuousness of the world. I can only hope, and work, to squash them all and liberate the truth, and soon.

And so, as my son spasms, so does the world. But there are elixirs. There is cannabis to fight seizures, there are fathers to soothe and mothers to spoon, there are parents and educators teaching their kids honesty and virtue even in—and perhaps owing to—the absence of god in schools, because it is very simply the right thing to do. There is love to conquer hate, knowledge to erase ignorance, truth and fact to crush lies and rumors, compassion to smash fearmongers, misers and fools, virtue to rule over vice, and the voices, bodies and ballots of youth to enlighten, change and lead us, to liberate and save a convulsing world.