running for it

saturday:

it's half past ten. just trying to get some sleep. there's a dense lump of tension, like a fist, lodged in my solar plexus. it feels electric, like it's vibrating through my entire being. its source is a mix of exasperation, helplessness and dread. sadly, it's all about calvin, who is out of sorts in the wake of two epileptic fits. he keeps banging the wall behind his bed. all i want to do is make a run for it.

calvin has had eight grand mals in thirty days. that translates into about half the month spent sleeping on me and the couch. i wonder what else i can do about his epilepsy. so exhausting living with it. today i switched his cannabis oil from hybrid to indica, hoping it might offer him some respite. he's pretty spacey, but that's typical the day after a tonic-clonic. my next move is to reduce his keppra. my gut—and a calendar marked up with orange highlighter and black sharpie indicating seizures—tells me the keppra isn't helping.

this tension i feel is cumulative. seventeen-and-a-half years of it. i often wonder what havoc it might be wreaking inside me. it's why i sometimes feel the need to scream. have to let it out so it won't devour me. or seat itself as a cancer in my organs, bones or blood.

in a move to ease my angst (and get in better shape) i started running. got new shoes. ran three days last week. took a longish, back-roads bike ride. the accomplishments were nothing to speak of. pretty meager efforts, really. still, i'm hoping they will stick.

i wonder if running might serve as some escape—from a stressful life with a messed-up kid. from being pent up and stuck. from the gnawing sense of dread.

perhaps running makes me feel more alive—my limbs and lungs pumped up with blood and breath.

or could it be i'm chasing something? a different vista? an extended moment all to myself? the dream of better days to come? some serendipitous adventure? a challenge other than handling my son's severe and complex conditions?

after today's modest jog on the trails around the soggy fields, the fist inside my chest had dissolved. i plan to run again tomorrow. with a bit of luck, i'll see some sights, and chase away some troubles, angst and sorrows.

keep on truckin' (toward justice)

Sweat trickles down my ribs. It's warmer outside than I guessed, but cool enough for a walk. I lead my son out the door, down the deck steps, then out to the field in back. Strolls with him have been more rare this summer than I'd like; it has just been too damn hot. As soon as we hit the path he balks. Yet again, I have to yank him along to keep him from trying to drop. With his left finger in his mouth, he looks slightly peaked and flushed, but nearing our goal, I refuse to give up. I keep on truckin'.

There used to be a time when Calvin could hold my hand and walk with little trouble. His gait was better, his balance more sure, his forward momentum, dependable. Now, if I don't tug him along, he stops in his tracks and stares at the sun. Sometimes he teeters backwards and I must catch his fall. The entire way I have to right him when he careens and stumbles. I worry that his brain's epileptic assaults are impeding his progression.

We just barely manage to make it around two corners and past Woody's empty house, but by the end of it I'm cursing and beginning to sob. I want to scream and punch a wall. So many hours, so many years, so many obstacles, yet so little progress. What a difficult, stressful situation, I think to myself, his and mine. It takes Calvin part of forever to scale the four back steps. I'm despondent. Spent. Empty. I'm weary of other, stupid, niggling troubles. Our nation is a hot mess—a reckless president whose mixed messages, indifference and neglect has led to a largely uncontrolled pandemic with 180,000 dead, a faltering economy, mass unemployment leading to millions without healthcare, civil unrest—and yet some folks want four more years of him. Black men, women and children keep getting shot by cops and vigilantes, their necks crushed by knees and chokeholds until they pass. Away. Beyond. Gone. Though these heinous incidents are legion, too many people still insist they're anomalies. But where are the scores of videos of unarmed White folks getting killed by cops? White-supremacist mass shooters and vigilante killers are handled with kid gloves, even as they tote the guns used to shoot people. They're described by some as "patriots" and "mother's sons," the latest's right-wing backers praising him for being executioner. Black victims, on the other hand, are routinely maligned as thugs. Their histories are picked apart and tarnished, their whereabouts, motives and movements questioned even after their lives have been tragically and unjustly snuffed out. Enough is enough.

As I reread the start of my last paragraph, I'm reminded of the civil rights fight in this nation. It is eternal. Burdensome. Exhausting. In too many ways, regrettably fruitless. Attaining racial justice in this country is a slog. A part of forever has passed, yet too many people still insist on being arbiters of the oppressed—deciding their truths, how they speak, where and how they should live, where and how they move, behave, dress, celebrate, grieve, protest, vote, perish. I understand Black anger and anguish to be immeasurable, something most of the rest of us can't fully grasp, save the indigenous who continue to fight similar injustices.

Calvin and my imperfect, burdensome life-walk is lamentable. But there are those who face worse dangers, stresses and impediments because of implicit bias, societal and systemic racism—we're talking cumulative trauma over 400 years. I think of the righteous who have the decency—not to be confused with courage—to proclaim that Black lives matter, and to protest the gross inequity we see played out daily in housing, healthcare, education, employment, voting, policing, courts and prisons. Though painfully slow and halting, there is a forward momentum toward racial justice which must advance for our nation to live up to its original promises. To attain it, we have to be fearless. We have to be relentless in our efforts. We can't give up.

As Reverend Dr. Martin Luther King, Jr. said, The long arc of the moral universe bends toward justice. Perhaps it's just around the corner, so keep on truckin'.

unforgiving

It had been only three days since my son's last grand mal seizure. As Calvin convulsed, at first tangled in his covers, Michael and I caressed his arms and legs, kissed his face and told him that we love him. It was the first time in awhile that I cried after one of his seizures. Perhaps my tears were triggered by a state of physical and emotional exhaustion from months of taking care of a child who can do absolutely nothing by himself save play with his baby toys in a bed with side panels and a netted canopy. This pandemic has made everything about life harder. On top of that, Calvin's epilepsy has been unforgiving as ever.

When the seizure was over, Michael went downstairs to finish preparing dinner. I sat on a step stool next to Calvin's bed and kept vigil, watching and feeling my boy's chest rise and fall. In the dim room, as I mourned my son's condition, I wondered again how I'd keep it up, this caring for him as he grows into a young man. I don't really know the answer. In the quiet, I recalled how, earlier that day, I had seen little kids riding bikes with their friends, siblings and parents. Last week I'd seen a child half Calvin's age swimming in the brackish water off of Simpson's Point with his mother, the two of them chasing schools of hungry fish churning the water. I'd seen a little girl skipping down the street with her dog. I'd seen a young family buzzing around in a small community garden, perhaps picking raspberries, beans or tomatoes. My child has nothing to do with any of it. His body grows but most everything else about him stays the same. Though sixteen, he's still an infant-toddler. He still wears diapers, which in the hot, humid weather make him sweat. His go-to toys are still rattles and chewies. He still seizes. About the only things that are different are the soft, thin mustache that has appeared and is gradually darkening, and the thought that he is becoming permanently psychotic due to years of seizures and antiepileptic drugs.

As evening fell and the room around me darkened, my thoughts turned to the young man I just started writing to who is living the rest of his life on death row. Online, I've seen photos of the cramped, rusty, neglected cells in his so-called correctional facility. I wonder if he can ever see trees, stars, the moon, or hear wild things bark at night like I do. I wonder what he dreams about while I dream of things like my mom and dad, San Francisco, missing flights, breathing underwater, Calvin seizing. I wonder if this captive soul can remember what the world looks like outside the massive prison walls. Does he ever catch the scent of sweet clover? Hear the buzz of bees and the chirps of birds? Does he remember or see bodies of water slip under low bridges? Does he imagine gleeful children so unlike my son leap from their spans on these unforgiving days of summer?

one of those days

Yesterday would have been one of those days when I'd cry on Woody's shoulder and he'd brush my tears away. It was also the first day in weeks that I walked down the street with Calvin to Woody's house. Knowing no one would be home, I let Calvin climb the steps to the side porch and, like so many times before, we tried to ring the doorbell. As I peered in through Woody's kitchen window, I felt sad knowing I'd never see him again, and I wondered what the new owners will think of a frustrated mother and her impossible son coming to bang and drool on the corner of their garage.

While I stood with Calvin as he mouthed the white vinyl siding, I noticed the small azalea I had planted for Woody a few years ago, the one which I insisted was pink and he swore was red. I saw that the hostas in the corner of his garden are beginning to bloom. I noticed how quiet it was standing in the driveway in the heat of midday, a stark difference from the morning I'd spent with a boy whose moaning, screeching and hollering has chapped my nerves to the point of fraying.

Back at home, as I sat on the green couch with Calvin batting away his flailing arms, cinching up my shoulders to keep from having my hair torn out, squinting my eyes and turning my head to avoid an errant fist, I began to weep. Every once in awhile I consent to feeling sorry for myself. Yesterday was one of those days.

After five months of consecutive daytimes taking care of Calvin by myself, I'm tired. I'm bored walking in circles behind my kid. I'm frustrated with his miserable antics. I miss seeing Woody. I'm mad at the world. At times, I resent my situation. I'm ready for life to get back to normal, whatever that means. I'm sick of the tiny little petty man in the Oval Office, despise his harmful and reckless policies, his deceit, his profiteering, his swamp full of bootlickers and cronies, his dog-whistle politics and the way he divides America. I'm demoralized by my son's relentless seizures, terrible behavior and my powerlessness to do anything to improve them.

Later in the day, while Michael was upstairs with Calvin, I watched as long shadows stretched across the backyard, heard crickets and birds chirping, noticed the sweetness of the tall phlox coming into bloom. A warm breeze swept across my face and carried a greying fringe of hair. I thought about the late afternoons when I'd go visit Woody, just as the sun bent around his front porch before falling off into the trees. We'd be sipping our toddies and watching the world go by, and maybe he'd be wiping away my tears.

mixed bag

The last month or so has been a mixed bag, much of it a bit of a disaster. At one point, midway through July, Calvin had had ten grand mal seizures in a rolling 31-day window. That's probably his worst stint (grand mal-wise) since being diagnosed with epilepsy when he was two years old. He ended the calendar month with seven grand mals, three focal seizures and one pain episode—night terrors? migraines? benzo withdrawal?—which we treated with ibuprofen, rectal THCA oil and, finally, nasal midazolam.

After the first bad stint of seizures, we decided to try reducing Calvin's Epidiolex, the plant-based pharmaceutical version of cannabidiol (CBD), which, over weeks, we had eventually increased to a dose of 90 mgs per day. Despite the fact that that dose is only half of the recommended starting dose for Calvin's weight, it seemed reasonable to reduce it for a few reasons: one, because high doses of artisanal CBD oils seemed to exacerbate his focal seizures; two, because his seizures had increased since starting it; and three, because his behavior has been so bad—lots of grousing and mania.

So, in the third week of July, we nearly halved his Epidiolex to 40 mgs per day, then a little over a week later reduced it again to just 20 mgs per day. Since then he's gone seven days without any seizures, which is no milestone, but it's better than having grand mals on three consecutive days.

In other news, Calvin is growing like a weed. The crown of his head reaches my nose, and my best guess is that he has easily topped eighty pounds. So, though he is still a shrimp for his age (though sixteen, he's the size of your average tween) he is getting bigger. And while growth is evidence of him thriving, he's getting harder to lift and handle.

Two days ago we started giving Calvin Milk of Magnesia to treat what we think is acid reflux which might be causing some of his manic outbursts. Thankfully, magnesium is known to be calming and it also treats constipation, so we were able to discontinue his Miralax, at least for now. Years ago, I remember reading that magnesium was being researched for its effect on seizures, so I am interested to see if it seems to help, though it might be hard to distinguish if any reduction in seizures is due to the recent decrease in Epidiolex or the initiation of Milk of Magnesia.

Thankfully, the past two days have been good ones. He's slept fairly well and been much calmer and happier despite the full moon. I'll leave you with photos taken yesterday, just up the river in Richmond, one of our favorite spots in Maine.

cries of anguish

If I told you that taking care of my disabled infant-toddler-teen sometimes feels impossible— emotionally, physically, psychologically—you'd probably take my word for it.

If I told you I know more about living with epilepsy than my son's neurologists—the drugs' heinous side effects, the manic ramp-ups to the seizures, the awful fits themselves, the fallout from them, the cumulative stress—you might concede.

If I told you there are moments when I want to punch a wall, nights when I scream my head off in sleep-deprived frustration, mornings when I want to run away from it all—the dirty diapers, the managing of medicines, my relative confinement, the traipsing around behind my wobbly son in mindless circles all day long, the blocking of his efforts to stare at the sun and smack me in the face and bite everything in sight and drool on every surface in the house—you wouldn't doubt me.

If I told you I have little to no time or space or freedom to do the things I want to do and that sometimes I resent my son, my husband, my life circumstance, you'd take me seriously.

If I told you that I live with the fear that my son will die in his sleep after an epileptic attack, you wouldn't deny me that anxiety.

If I told you that my son's future seems bleak, and that I worry if he outlives us that others might mistreat him and that no one else will love him when he's no longer cute and cuddly, you'd feel me.

If I told you we've been gawked at, scorned, cheated, avoided, ridiculed and neglected, though that might come as a surprise, you'd believe me.

If I told you all of these things on a regular basis and for years, even if I've never met you, I've no doubt you'd likely show me love and compassion and maybe even ask if there were something you could do to make things better.

And hopefully, few if any of you would respond to my cries of anguish by telling me I'm imagining things or blowing them out of proportion, that I'm too serious, too sensitive, playing the victim, that I need to get over it, or that our situation doesn't matter nor does it warrant telling.

With this in mind, it never ceases to amaze me that when African Americans decry racism, police brutality, oppression and injustice, there are still those who respond with deflection, distraction, condemnation, disparagement and denial. Even in the face of mounting cell phone videos showing innocent Black men, women and children getting harassed, brutalized and killed by White cops and civilians, there are those who will claim that the victims are playing the "race card," must somehow be deserving of their mistreatment or demise, or that the offenses are anomalies.

Despite frequent anguished pleas, those steeped in racial bias or animus—whether consciously or not—condemn the ways in which Black people peacefully protest their oppression and the violence waged against them whether it be by taking a knee, taking the stage, taking the mic or taking to the streets. Others cling to ignorant and dismissive platitudes like, "All lives matter," a tone-deaf and hurtful retort to the more urgent maxim, "Black lives matter," even going so far as to create, share and repeat tasteless memes while innocent Black men, women and children are murdered with appalling frequency.

Despite cries for equality and reams of evidence supporting its disparity, there are still those who perpetuate rugged-individualist and bootstrap theories. They doubt, deny and turn a blind eye to the grim and profound effects of systemic racism, discrimination, and the maligning and marginalization of Black people. As a result of such offenses, African Americans are at higher risk of living in substandard housing, in food deserts, in cities with underfunded and crumbling schools and drinking water tainted with lead. And due to the fact that institutional racism exists at every level of government policy—education, housing, lending, healthcare, employment, criminal justice—African Americans are at disproportionately higher risk than White people of suffering from coronavirus and other diseases, infant and maternal mortality, police violence, arrest and incarceration.

The hardships raising my severely disabled son have never been questioned, even though most who claim to understand them cannot truly empathize. But somehow, the decades- and centuries-long protests by African Americans against injustices, fear and risk of bodily harm have historically—at least until more recently—gone unheard. Too many people remain entrenched in their denial of benefits they enjoy because of having white skin—a reality that in no way whatsoever discounts hard work and ingenuity and is nothing to be ashamed of. Perhaps fear or pride gets in the way of conceding that success isn't ever achieved in a vacuum. Maybe, like me, whiteness might have helped you get that decent education, that interview, that job, that apartment, that loan, that benefit of the doubt, that second chance. Maybe, like me, whiteness helped you skirt defeat, suspicion, catastrophe. And maybe—probably—whiteness helped you avoid the risk of getting stopped, questioned, arrested, your neck crushed under some cop's knee.

Protesting the killing of George Floyd, outside Brooklyn’s Barclay Center. Photo, Yunghi Kim/Contact Press Images

still sheltering

After a couple of months sheltering in place, and despite a rising coronavirus death toll, states are beginning to open again. Folks are lining up to get into their local barber, salon and drive-in. I heard that the ice cream stand up the road a spell was packed last weekend. I'm beginning to see groups of kids riding bikes together. Glorious weather is drawing neighbors outdoors. And while I miss our friends terribly, and long to gather with them, I'm still skittish.

Some folks are comfortable hanging outside in small clusters, their chairs spaced at what is thought a safe distance. Others are bringing childcare workers back into the fold. Many have continued to visit their extended family members—parents, grandparents, sons, daughters, in-laws. Some families have been "quarantining together" with other families all along—albeit not under one roof—citing their trust in one another despite evidence that wider circles exponentially increase the risk of getting the virus and spreading it to others.

Sunday, when I visited my friend outside for the first time since autumn, I kept my distance. He sat on one end of his ample porch, I on the other. When he sneezed, I pulled the collar of my jacket over my nose, envisioning the droplets hitching a ride on the wind. For months he's been receiving visitors on a daily basis, some of them frontline healthcare workers, others employed in various essential businesses potentially exposing them, and him, to the virus. So visiting him makes me a tad nervous.

As I watch the news unfold, I wonder how many of the brazen gun-toters protesting government shutdowns know that perhaps as many as half of infected people experience no symptoms while actively shedding the virus. Have they heard that small droplets can hang out in the air eight minutes, perhaps longer? Do they understand that wearing a mask is meant to protect others? When I explain to people why I am keeping such a distance, I wonder if they think I'm too zealous. Do they get how vulnerable Calvin is, or what a clusterfuck we'd be in if Michael or I were to get seriously ill? I mean, who would take care of Calvin if we were laid up, or worse? These questions lead my thoughts to little Charlotte Figi, a girl a lot like Calvin who died last month from complications of what was undoubtably Covid-19.

I feel there is so much we still don't know about this thing. We don't have a vaccine. We don't have a decent treatment. Immunity may be elusive; five sailors who fully recovered from it have recently become reinfected. And so, even though I'm eager to visit friends and host gatherings of our lovelies, for now I'll keep sheltering in. I'll continue to spend my days taking lots of short walks around the neighborhood and long car rides near the water with Calvin. I'll keep spending my mornings savoring time to myself in the woods walking Smellie and in the garden soaking up the beauty of flowers, hummingbirds and bumblebees, and dreaming. I'll keep looking forward to evenings with my husband who, thankfully and for a multitude of reasons, is the best person with whom I could ever find myself in quarantine.

Simpson's Point

looking glass

Emerging from the foreground is a blue-and-white-striped duvet folded neatly and laid upon an ivory coverlet. On the other side of the glass, to the left, sits my eighty-seven-year-old buddy, Woody. The reflection of the outside world is too vivid to see him reclined in the shadows, but he's there. Behind my figure is the house in which Mike lives, my ninety-seven-year-old widower-friend whom I haven't seen in several days and whose voicemail is full when I call.

It's nearly five o'clock. Michael just got home after a day of printing the photographs he took while in Paris, Hawaii and Lisbon Falls, Maine, which is just up the river a spell. It feels weird that travel isn't really possible or advisable now. Smellie is somewhere in Woody's yard, her leash trailing behind her as she trees squirrels.

The way we connect in this crazy coronavirus time is strange—by phone, by FaceTime, through bandana masks, from across the street, and from the opposite sides of storm windows.

Before I literally look in on Woody, I ask him, in the manner of my late father, if he is decent. He chuckles. I walk around the back of his house to his den. Though I can barely see him through the glare, we joke on the phone about how strange it might look to the neighbors to see a woman peering into his home through a side window. I told him that for me to do so seems completely normal. Through the glass, we tease and laugh. I wish I could hug him like I used to. Maybe in warmer weather we'll again be sitting on his front porch together sipping bourbon and ginger ale, watching passersby, discussing birds and neighbors and politics, even if from a safe distance. I hope so.

Later, Michael and I speak with our buddies on FaceTime, first Jim, then Matty. Jim makes me laugh until I nearly wet my pants. Clever little devil, and with a face as earnest as any young fellow. He told us so. I wish Jim and San Francisco weren't three-thousand miles away from us. And I miss Matty's frequent visits, along with dozens of others. Because of the coronavirus, everything is so beyond what we've come to understand as normal.

I've been making an effort to see one or two loved ones' faces and or hear their voices on the phone every day or so. For me, these quarantine times require it in order to get through without too much despair seeping into the long hours. The news cycle and state of things and The Unhinged One are crazy, fascinating and outlandish, like looking at an image and not really knowing or understanding what you're seeing and what might be hidden in the shadows. And yet, the rest of the world and its people are so beautiful.

nothing to do

My nonverbal disabled son and I are a couple of goddamn pros at sheltering in place with nothing to do. Seriously. Calvin and I can't play cards or board games or solve jigsaw puzzles. We can't watch movies together because he doesn't attend and can't sit still. We can't draw pictures, work crosswords or write haiku. We can't make funny videos and share them with others. He can't text or FaceTime with friends even if he had friends. We can't sit quietly in the sun and read our own books. We can't walk the dog together or throw her a ball. Though he is sixteen, I can't use this time to teach him how to drive a car. We can't ride bikes or bake bread or pop popcorn. He can't sit and play video games for hours on end. He can't climb trees in the back yard or help me rake or weed or pick up downed limbs and twigs or plant seedlings, water them and watch them grow. We can't dance together to our favorite tunes or talk about what this crazy coronavirus time means to each of us or how it makes us feel. I can't explain to him my indignation that some folks still think healthcare is a privilege, that others gripe about things like raising the minimum wage or paying teachers more. I can't describe my love for the all that is good in the natural and civilized world and for my good peeps, nor my contempt for things like voter suppression, corporate welfare and greed, inequity, xenophobia, racism, sexism and misogyny, and the reckless, backwards, ignorant, deceitful, egocentric, shameless, conceited, crooked, self-dealing, cowardly, lame-ass president.

Nope. Can't do any of it.

Instead, Calvin and I sit on the green couch and cuddle for a few seconds or minutes—as long as he can sit still—then I pad behind him in circles, sit back down on the green couch and do it all again. This cycle happens umpteen times within any given hour on and off all day long. When he wants a bath I give it to him. I help him out of his clothes and diaper. He sits there in the warm water biting his Oball, spinning and splashing and putting his face in the water, holding his breath or drinking it time and again. I help him out and dry him off and help him put on his clothes. I pry him into and out of his shrinking johnny-jump-up so he can spin in that too. I help him in and out of his bed where he plays with his Sesame Street cell phone and other toys made for babies. I give him lots and lots of hugs and kisses and tickles. I spoon-feed him and dole out finger foods, but not too quickly lest he choke. Most days, we go on long car rides to places where we can nearly glimpse the open sea, though I'm not sure he sees it. We take frequent short loops around the neighborhood and garden. I hold his hand most of the time so he doesn't careen into the street or fall into a shrub. Sometimes, he'll perch on one of the backyard benches trying his best to stare at the sun. When I sit next to him he puts his arms around my neck. If I'm lucky, I get a kiss or two, maybe more.

During this coronavirus shutdown, as in any other time, I wake at night to lay my sleep-sitting son back down and cover him since he can't manage to himself. I give him extra homemade cannabis oil if I sense a seizure coming. If he begins to moan and shriek and sob and writhe like the other night I give him acetaminophen, usually in suppository form, and then wonder what else I can do to stop his misery. With Michael, I hold him while he seizes. I note his ashen skin and blueish fingers. Afterwards, when he's back to breathing, though irregularly, I slip him more cannabis oil to avoid a repeat. I crawl into bed next to him. My palm on his chest, I feel his heart pound, his ribs rise and fall. Together, we drift off to sleep.

Yep. We've been practicing this sheltering in place for sixteen years. No place to go. Nothing to do. No one to do it with while Michael is hard at work in his studio. The two places Calvin liked to frequent—the grocery store and the coffee shop—are now off limits. We've become a couple of goddamn pros, and though I always hope for release from our unique imprisonment, it's probably not going to happen any time soon. So, in this coronavirus quarantine, I guess we're lucky that for us it's relatively easy to do.

Calvin giving me a kiss

resentment

To be honest, and thought it's an ugly emotion, there are times when I feel resentful—resentful of my disabled child, his neediness, his fleeting intensity, the way he disrupts my sleep and chaps my nerves. Though I'm mostly grateful, I'm sometimes resentful of my husband's freedom and frequent travel to faraway and exotic places which I long to revisit and explore. I'm resentful of this nation's so-called leader, his reckless policies and spineless lackeys. On days like this I resent the snow and the fact that the district called off school. I resent Maine winters, icy sidewalks, bad drivers, priggish individuals, ignorant fools. My weariness gets the best of me on days like these. No doubt you can tell.

Last night, Calvin went to sleep as soon as his head hit the pillow. Thankfully, Michael and I were able to finish our dinner while watching the first half of the film, Roma, basking in its gorgeousness. But just as we called it a night and crawled into bed, just as I was about to drift off, Calvin sat up and banged his head against the side of his bed and pounded his mattress repeatedly. In the space of half an hour, I laid him down for the one-billionth and one-billion-and-first, second and third time. I was so sleep deprived and vexed I could not contain the rounds of expletives rapid-firing from my mouth. These are the kinds of times when my resentments feel steroidal.

I have little doubt that the politics of the hour exacerbate my feelings of despair, frustration, and resentment. Certain circumstances bring irony into sharp relief, triggering some indignation, like when staunch opponents of Medicare For All must end up relying on fundraisers to cover their medical expenses, or when those with disabled children vote Red, going against their self-interests, or when people make the absurd and dangerous claim that Democrats want to destroy America, or when folks admonish decorated career diplomats who bravely and selflessly defend democracy.

Yes, when I'm exhausted I'm prone to feeling most resentful. I guess my guard is down. I resent the looks I get from strangers who don't understand the first thing about Calvin or what it's like taking care of his kind of child. I resent professionals of all ilks who think they know my son better than I do. I resent parents of typical children who show contempt for Special Education funding. I resent that there are really no local programs for kids like my boy. I resent the fact that some people malign me or play me for a fool. In the big picture, however, none of that really matters much to me. I know who I am, I know my tribulations, I'm okay with how I've learned to roll.

Today my eyes ache while feeling simultaneously swollen and hollow. My son is up to his manic screeching and antics. We're stuck indoors. The news out of Washington keeps getting worse. With little doubt things have not hit bottom considering the sycophantic actions of those emboldening the autocrat in the Oval Office.

Despite resentments, however, there is some welcoming news. Calvin is improving in myriad ways regarding his calmness, understanding, focus, expression, compliance, and overall sleep. He is having fewer seizures—virtually no focal ones—on far less medication. He has begun pooping on the potty after we give him a suppository, which translates into fewer dirty diapers. Though spring is still months away, we are headed in the right direction. Then, there's the excitement and hope of a sea change come November, after getting behind one of the wise, respectful, experienced, decent, Blue presidential candidates who have righteous policy agendas to help the middle class, students, the environment and the most vulnerable in out nation. The image of all these truths dissolves my bitter resentments in an instant, like the snow melting on a salted street in winter.

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

feeling loved

Half-empty bottles of wine and spirits were strewn across a handful of countertops. Partygoers stood elbow to elbow, clad in their finest threads for a housewarming, and perhaps to celebrate the impending start of winter break. A few friends I hadn't seen in ages, others I'm sure I had run into just days before at the grocery store. In all, I bet I gave and got a hundred hugs or more amongst the gathering of wicked smart, humorous, well-informed, and compassionate people.

Midway through the evening I met someone new, a former student of the college. I began by telling her that my husband teaches photography there. Then, realizing how little that defines me, I went on to describe my role in taking care of a son who has significant disabilities—visual impairments, cerebral palsy, incontinence, wordlessness, seizures (rarely these days do I mention the apparel design career I had a lifetime ago.) The woman, who was accompanied by her mother-in-law, quickly realized she knew me. Excitedly, she mentioned that some years ago she had spoken to me on the phone inquiring about cannabis therapy for her older sister's epilepsy; the party's host, our mutual friend, had put her in touch with me. I strained to remember our conversation amid the scores of similar ones I've had with others over the years, mostly with parents of children with epilepsy. Eventually, it came back to me when she re-expressed her gratitude in speaking to another who has intimate personal experience (as opposed to most neurologists) with the torments and trials of profound disability and epilepsy.

My new friend went on to say that she'd read my blog. She told me that her sister had since passed away. She expressed interest in meeting Calvin. I had a nice, parallel conversation with her mother-in-law. We all embraced in solidarity.

For the remainder of the party I caught up with a number of my lovelies while Michael mingled with others. I came away from the evening with a warm glow of feeling so very loved. In one night I'd caught up with folks I hadn't seen in years. I got to know others, if only slightly, better. I made the acquaintance of a few. I set a long-overdue date with a favorite neighbor and friend. In my mind I even reminisced about my years designing apparel and how, though the work itself was challenging, rewarding, creative and fun, it was ultimately tarnished by vile hierarchies, bureaucracy and wicked internal power struggles of the corporate world.

The next morning, while sitting at my desk trying to eke out a word or two while Calvin had one of his curious meltdowns, I reflected on the previous night's engagement. I realized how different my life is than any I've lived before. I'm glad to be rid of the stresses of the corporate apparel world. And though I wish Calvin were a healthy child, I'm grateful for the chance to be his mother, for the challenge it represents, for the learning it affords, for the people I meet as the result of being his mother, and for his love and the love and communion of countless others, especially in the face of doing one of the hardest things I've ever done.

dragon moms

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

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

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

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

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

Photo by Michael Kolster

on survival

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

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

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

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

caution to the wind

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

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

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

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

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

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

click on any photo to enlarge.

empathy and betterment

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

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

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

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

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

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

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

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

Carolyn Cole / Los Angeles Times

when grace goes out the window

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

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

"GODDAMMIT!" 

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

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

hell is an ambulatory eeg

i really don't feel like going into it. suffice to say, this happened today and is still happening. #ineedfourmorehands #fuckthisshit #webetterlearnsomething #colossalpainintheass #impossiblekid #tomorrowcannotcomesoonenough

shitshows

Everyone needs something to laugh about, particularly in these days of shameless bigotry, of families being painfully separated, infants "defending" themselves in immigration court, White folks calling police on Black men, women and children for rightfully swimming in pools, barbecuing in parks, entering their own homes, mowing lawns and selling water in their neighborhoods on hot summer days, in these days of a POTUS eroding our alliances while cosying up to tyrants, his administration attacking our clean water, clean air, reproductive rights, human rights, health care, free press, and diminishing our standing in the world as a reasonable, ethical, dependable, faithful nation worthy of respect.

Yes, the cartoon below made me laugh, giving me a brief reprieve from the shitshow going on around us these past eighteen months.

Like politics, life with Calvin has its ups and downs and exacerbating in-betweens. I'll be the first to admit that taking care of him is the most difficult challenge of my life, and it tests me daily. Caring for our tiny teenager who in reality is much like an infant on the verge of walking—he's non verbal, still wears diapers, can't really feed himself, suffers poor balance, has occasional tantrums—has been hard on my mind, body, spirit, and psyche over the years. It turns out, for whatever reason, I'm up for the challenge. But don't tell me that it's because God chose me to be Calvin's parent due to my strength and patience. Don't tell me everything happens for a reason which, if you break down that theory, it means that some divine entity—the likes of which I don't and could never believe in—put Calvin here on Earth in the fucked-up and suffering condition he is in only to teach some twerp like me a lesson; I am not worthy of my son's suffering. No one is. And don't tell me that God doesn't give folks more than they can handle, because my response to that will always be, "if that is true then why do people off themselves?"

Nope. Calvin is very simply here. And I am simply the mom who birthed him. And his brain is messed up because something in nature went awry or simply didn't develop. And I choose to find purpose in the shit that happens to him and to us, in great part because I must've been born an optimist, I believe deeply in the power of gratitude, I am strong, patient and resilient, and I luckily inherited my mother's effervescence and my father's sense of humor and cynicism.

So, world, turn up that shitshow dial to eleven if you must. I—and the rest of us—can take it, even if we're sometimes weary.

sacrifice and reward

I cried sometimes it hurt so bad for so long, and with only seconds to catch my breath before I had to go on. Daily, my mind and body were crushed, lungs on fire, muscles churning and burning until I felt I could sink like a stone if I let myself. As many as seven, eight and nine miles I’d swim in a day, lagging behind the others whose psyches and wills were at that time stronger than mine. At just eighteen, I became worn out, torn up, undone, and I asked myself, what for?

It’s days like today, stone cold and gray, that I walk under a stand of pines and note the unmistakable reek of chlorine seeping from vents in the brick wall of the college pool. It smells warm and heavy and I imagine, if it were visible, I’d see it resting like a blanket of mist at my knees. The scent spurs memories of a million laps, of aching limbs, stinging eyes, a hungry body and a broken soul. But the sacrifice was not without reward.

I have little doubt that those years of double workouts, of killing myself as many as four hours a day, have helped me better face the challenge of raising a chronically ill child. It’s hard to say what else could’ve done as good a job teaching me diligence, resilience, dedication, ambition, mindfulness, the grace of triumph, the art of loss and, perhaps most of all, that I am strong—physically and mentally—beyond what much of society still tells women they are capable of being.

While I was pregnant with Calvin I swam a mile most days. Perhaps it’s what nearly killed him. Then again, maybe it’s the very thing that kept my boy alive when he was on the verge of drowning inside me, his little brain missing parts, so not well equipped to survive.

Now, instead of thirsting to finish first or swim a lifetime best, I coach my little boy. I still get up every day before six, often when it’s dark outside, to give him his morning medicine on time. In his wake I do tiresome laps around the house, swimming through the monotony that is caring for my son, and lift his fifty-five pounds until my muscles ache and my tendons burn. Though at times I want to, I don’t give up, just keep on plodding and pressing and looking for ways to beat this thing, conquer his seizures, win the prize of a healthier child.

As if swimming, I’m still holding my breath, perhaps saving it for the distance my boy and I still have to go. So I pace myself instead of sprinting and, like in open water, I bury my head and try in vain to think of anything but the pain. I taste the brine wondering if, maybe, it's what buoys me. When I meet rough waters, I work harder to better slice through the mire. And if I’m met with a breaker, I dive head on into it, where below its surface I can pause instead of being carried away, then I come up, catch my bearings and go on.

Photo by Michael Kolster