dear friend

now i will be strong for you. i can. you will stay in my thoughts and you will shine. i know. focus on the little things. the smell of your coffee, the feeling of the sun on your face. the wind in your hair. the quiet of a back road. the taste of clover and salt in the air. the warmth of a loved one's hand. the feeling and sound of the ground under your feet ... tarmac ... carpet ... tile ... wood ... rubber ... linoleum ... sand .... grass. the happy din of knives and forks on a plate. the rich taste of dark chocolate. the sound of bees and birds and brooks—even the memory of them. the color of the sky at dawn. at noon. at dusk. in the middle of the night. the patter of rain on a metal roof. the beauty of wilting flowers. the happy creases in the corners of smiling eyes. the long embrace of a friend. the light caress of shower water as it trickles down your back. the smoothness of soap in your hand. the buzz of a crowd. linger on these little things and let them move you. let them make you weep. they can be a joy in and of themselves. let the other big stuff take a backseat, if only for a moment. know you will remain in my thoughts. know i will listen and be there for you. as you have been for me. because, despite my own burdens (everyone has them) i have an infinite reserve of strength for you.

universal beauty, unconditional love

If my nonverbal, incontinent, legally blind, unconditionally-loving son Calvin has (unwittingly) taught me anything, it is to be grateful. That might seem counterintuitive considering our sorry situation, but I've come to understand that mindfulness and gratitude are two practices that help get me through the bruising parenting of a cognitively and physically disabled child who has a chronic condition as relentless and unforgiving as epilepsy. Gratitude and mindfulness help keep me grounded while at the same time distract me from getting stuck on the troubling aspects of life concerning my son.

Last Saturday night was a rough one for us. After a day of snotty-nosed sneezing, Calvin developed a cough and a fever of 102.6 degrees. Several hours later, I was amazed that the stubborn fever hadn't managed to break his twenty-seven-day seizure-free streak. However, despite alternate doses of acetaminophen and ibuprofen, at 1:30 in the morning a grand mal finally broke through, and a second one regrettably followed a few hours later. The kid is still sick.

Nevertheless, on Sunday, as on most days, I found things to be grateful for: Calvin didn't have a third seizure; he felt well enough to be interested in a car ride; though he didn't eat, he took in fluids; I still managed to get outside by myself to run a few miles. Practicing gratitude, however, doesn't mean I don't also lament Calvin's and our impossibly difficult and relentless situation.

Throughout the weekend, I thought about a social media post I'd seen in which its author expressed her belief in a heaven for the followers of Jesus. The specificity of her remark made me bristle a bit, understanding well that many if not most Christians are convinced that nonbelievers—no matter how virtuous—will be tormented in Hell for eternity; I've had friends and acquaintances tell me that's where I'm headed simply because I'm not Christian. Mostly, I laugh off what I regard as an absurd, fantastical, primitive invention. I went on to consider Calvin's innocent obliviousness to Jesus. I thought, too, about my many salt-of-the-earth Atheist, Jewish and Muslim friends who, though they know who Jesus was, do not claim him as their lord and savior. If there is a god, is "He" so conceited and merciless as to banish decent people to eternal damnation for their so-called indiscretion? Are we/they not God's beloved children, too? Shouldn't virtue be valued over appeasement?

I went on to recall an interview I did with a student of journalism who produced an audio profile of me during the height of the pandemic. She made a gorgeous, seven-minute piece about my life with Calvin. Her depiction is rich, though doesn't include my recorded musings on religion, Christianity, specifically. I surprised even myself when I told her that many aspects of Christianity offend me. I had never thought of it in those stark of terms before, but as I described sweet Calvin's miseries and struggles—his malformed brain, inability to adequately express his wants and needs, his helplessness and vulnerability, his seizures, the heinous transient and permanent side effects of epilepsy drugs and their withdrawal—my position crystallized. I lamented to her the "everything happens for a reason" and "God doesn't give you more than you can handle" platitudes that come my way all too often from well-meaning Christians when they learn about Calvin. To the former, I usually respond by saying I don't believe it for a second; to the latter, I counter by asking why, then, do people kill themselves?

Though raised Catholic, and despite the fact I'm fond of the presumed teachings of Jesus, I lost my religion ages ago, having first begun to doubt it with the tragic swimming pool accident of a best friend's two-year-old sister when I was fourteen. As the years have passed, I've become more awake to Christianity's patriarchy, sanctimony, power-lust, enrichment, racist and bigoted history, and the hypocrisy of some of its most ardent leaders and disciples, which doesn't negate the fact that, like all people, most Christians are good.

But, there is something else that troubles me: religion's depiction of the creator (assuming there is one) of our mind-blowingly vast and expanding universe as anthropomorphized, obstinate, immutable, callous, conceited, judgemental and unforgiving—a being, I'd argue, that seems made in man's image rather than the other way around. What exactly would be the motive for an allegedly omnipotent, merciful god to let "His" children suffer, to test them so harshly, setting up some of them—like Calvin and others who through no fault of their own are isolated and ignorant of Jesus—for certain failure? And if we puny humans are capable of forgiving each other's mistakes, shortcomings and most heinous offenses, why isn't God? What is the point of a fealty experiment, anyway? Shouldn't virtue be enough?

Knowing with the utmost conviction the answers to my own questions, I return to musing on gratitude—for the green canopy of trees, for a healthy body able to run free for miles by myself, for an adorable, affectionate child, a husband, friends and family who love me, for kind strangers and shearling slippers and smoked-chicken enchiladas and black-eyed susans and Nan's dahlias and lemon bars and Smellie dogs and cozy homes and blue ocean vistas and moody skies and screen porches and chilly mornings and warm breezes in the afternoon. Finally, I land again on imagining that wherever, whatever or whomever these gifts come from must unquestionably be free of judgement, an expansive and evolving universal beauty. And if perhaps it's a celestial energy or being, I imagine it to be no less than my pure son Calvin—a force of genuine and infinite acceptance and unconditional love.

snapshots

After our son's first grand mal of the night, I laid in bed with him. In my head, I began to write my blog. Like our daily car rides, my thoughts looped around. Words took different turns. Images previously seen clicked into narrative landscapes—physical, emotional, virtual. Eventually, I nodded off to sleep.

Of late, Calvin has been too ill to take car rides daily. Some sort of infection—urinary tract, bladder or kidney—means we haven't been out much, or we've driven short loops close to home in case he has another daytime seizure. I lament the days in which I can't travel the backroads. I so miss seeing the gorgeous vistas, the wide open spaces, the big skies, my people: the Carhart man with his three willful dogs; the pair of women with similar haircuts and purple jackets; the tall man with his cute, wiry mutt; the black-clad couple who live at the mouth of the inlet; the bikers and joggers of every age and shape; the marathon runner; even the skinny old hippy chick with the puffy coat, nappy hat, mauve stockings, hiking shoes and poles who looks at me with a bit of suspicion as if she owns the road. They all unwittingly buoy me through this lonesome pandemic. Each sighting, smile, wave and nod somehow lifts me, makes me forget about stresses and worries, Calvin's seizures and our limitations. Without these people, I'd be feeling altogether differently; in other words, not as good. These have been some long-ass, monotonous days—over a year of them—caring for a boy who can do nothing by or for himself.

But I do find respite. Ben came up from Boston Sunday. With Calvin secure inside the house where we could check on him frequently, the three of us sat safely distant in the sunny driveway. Ben's eyes shined bluer and brighter than I remember, at times exuding understanding and compassion. A former student of Michael's, we talked about photography and discussed the art of mindfulness—of finding deeper meaning and beauty in the mundane; with that I have a lot of practice. He asked what kind of relationship Calvin has with language. I was touched by his curiosity and depth of thought.

Ben told us he brings along Polaroid snapshots of his friends when he travels for business. Lays them out in lonely hotel rooms where he can see them. It's as if his people are there in person. It helps him pass the weeks and months away from those he loves. I imagine he might feel as if they're seeing him too, which must be validating in a pandemic for those seen by few.

On Monday, after starting an antibiotic, Calvin seemed to be feeling better. So we took a longer drive down a favorite road to a boat launch eight miles south or so. On the drive out and back we passed the runner. His pace is swift and fluid, as if he never touches down. I'm reminded of the winged feet of Mercury, god of travel. Like when I swim or tread water, it seems he can run forever. Though I reckon he goes quite far, his face remains placid. His endeavor appears effortless. So as not to startle him, in passing I put my hand out the open window hoping he might see me waving as we passed by.

Though we'd already traveled a distance, Calvin remained happy in the backseat playing with his toes. The songs on the radio—some familiar, others newer—soothed me. I chose to take two more favorite loops. Nearing a quiet corner where a sloping neighborhood street meets another road, again I spotted the runner. Well before the stop I paused to give him space—for mind and body. Flying past, he waved a hand in my direction. A sense of joy and ease washed over me. As if evidence of my own pandemic existence, I had been seen and, for a moment, it felt as if he carried me along.

In taking a left turn homeward, I was made to pass the runner one last time. I hesitated to catch his gaze for fear of interfering. As his form receded in the frame of rearview mirror, I was reminded of Ben's snapshots, and of mindfulness and gratitude. I mused: mental pictures of these backroads travelers, a couple of whom have become in ways beloved, are like snapshots in my pocket. I keep them in my thoughts, forever curious of their struggles, passions, hopes and burdens. Not unlike my dearest friends, I carry memories of their forms and faces throughout my days and in-between seeing them in person, like Ben's Polaroids displayed on hotel tables. 

At 3:00 a.m., in the wake of Calvin's second grand mal, he suffered some miserable agitation. After having done all we could to aid and comfort him, I heard the train roll through. Hearing its whistle and rumble calmed me. I imagined taking it to its final destination, wherever that might be. I thought again about my backroads folks. I wondered—not so humbly—if they ever imagine, however fleetingly, my travels through landscapes, time, emotions. I wonder if I've become in some strange ways meaningful to them like they've become to me. Like a stack of snapshots, do impressions of this smiling stranger behind the wheel endure—not as a burden, but as a buoy? Or are my musings more a measure of some real pandemic loneliness and fatigue?

Photo by Ben Painter

riches out of misery

a reader asked me recently, how do you do it? how do i care for a significantly disabled child with all the burdens, including a chronic condition? in response, i cited the brutal years of extreme competitive swimming and how it steeled me. i cited my strict father's wicked work ethic which i inherited. i told her how much i adore my impossible son. i considered how much i love a challenge. i thought about my supportive spouse. then I reflected on mindfulness as both meditation and distraction. like focusing on the way this morning's layers of sleet felt as if i were trudging through coarse kosher salt or sand at the beach. how the sleet sounded and felt when it hit my jacket and cheeks. how the birds in the trees seem to be announcing spring. how being the only human in the trails and on the road can feel both liberating and lonesome. how the trees have a tinge of silver as ice clings to their limbs and needles. how their branches sag under the weight of it all as if in solidarity with me. how still pools of water reflect the surrounding world, sometimes with heightened clarity. how luxurious it feels to have my son linger in my lap peacefully, even though he's ailing. how all these seemingly insignificant things, plus gratitude—for family, friends, kindly strangers, good fortune as well as struggle, the ability to write for myself and for avid, compassionate readers—can make riches out of misery.

just two

Suppressing my instinct to embrace her felt strange. It had been easily two months since we'd last met over coffee to discuss politics, writing, dreams, food. At a safe distance—more like ten feet than six—we took Smellie to the fields and made our way along the path through the woods, veering into the brush whenever we encountered others. It was only the second time since all this coronavirus craziness began that I met with a friend. As we strolled, we caught up on each other's goings-on, and that of our sons and husbands. We toyed with the idea of the four of us gathering for cocktails around a backyard fire, but neither could say when we'd feel comfortable enough. It seems there's still so much we don't know about this virus, and we worry about letting our guard down.

When we arrived back at the house, I considered offering her something to drink so we could sit and enjoy the dwindling afternoon sun in the garden. But I'd have to touch her glass, I thought to myself while trying to work out how I could logistically handle it safely. She told me she had to be on her way, anyway. So I walked her to her car and, from yards away, we gave each other air hugs, and I blew her a kiss goodbye as she drove off.

Later, I told Michael that though I loved seeing her face and visiting with her in person, it felt dispiriting to have to keep so far away from someone I like so much. There's something melancholy and alien—especially since I, like Calvin, am a very tactile person—about seeing beloveds but not being able to hug them. It's a feeling I don't get when I FaceTime with others, though there's a tinge of emptiness in doing that, too.

But until we feel in our bones and guts that it's safe to gather, drinks will be made for one couple. These chairs will be lounged in only by us. The garden will be visited by no other humans, except maybe in passing. The backyard fires will be warming just two.

musings

a stink bug perches on the bristles of my toothbrush. i know more about ventilators than i should. this morning's coffee tastes luxuriously of earth. as i run through the forest, pileated woodpeckers hammer and cackle from above. nearly every surface in this house is covered in dust. some things never give up. i've got an ache in the ball of my foot. on the underside of smellie's ear there's a mat that feels exactly like felt. it's astounding what some people call leadership. one tablespoon of butter has as much saturated fat as half a cup of vanilla ice cream or a large bag of potato chips. the campus is silent. students' bicycles rest on flat tires. matching cuts on my middle fingers throb, but only when i focus on them. the full moon works its gravity on seizures. charlotte, a little girl a lot like calvin whom i never met but loved just died from probable complications of the coronavirus. her mother was my mentor and is my hero. the morning sun shines in sideways, its light refracting through glass like opals or rain or the way trees blur through windows of a speeding car. my wedding ring clinks like a wind chime against my mug. steel cut oats get stuck in my teeth. the chair i write from groans and squeaks. pride gets in the way of apology. i imagine the hand that painted each brushstroke of face and landscape. reflections are everywhere and everything.

Photo by Michael Kolster

regarding calvin

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

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

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

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

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

whatever you are, be a good one

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

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

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

—Henry James

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

—Charlotte Bronte

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

—David Thomas

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

—Marie Curie

Be curious, not judgmental.

—Walt Whitman

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

—Ranier Maria Rilke

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

—Mary Shelley

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

—Sjourner Truth

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

—Alfred Tennyson

Photo by Michael Kolster

bigger picture

My husband said, "You have to forget yourself." He was describing what it takes to care for our son. It's a monotonous, tedious, sometimes frustrating job which requires laser focus on Calvin's every move lest he get hurt or make a mess out of things, namely his own shit, of which I have much first-hand experience.

In yesterday's post, helicopter mama, I describe some of the minutiae of Calvin's care, my bad habit of hovering over him and his caregivers and, in doing so, my tendency to step on toes. The post drew a number of comments, the first from my friend, Les, whom I've known for twenty-three years. He wrote:

You are the only woman I know that is strong enough and has the right personality to do what you do.

One of Calvin's former therapists commented:

poignant and insightful for those who hope to say the right thing ... but don't.

A friend and mother of a child like Calvin sent me one of two heart GIFs, and another simply said:

Yup.

One reader with whom my post struck a nerve, wondered for whose benefit I write the blog. I explained that I write it for myself and those in similar situations, with the added hope of engendering introspection, including in myself, and to offer insights into messy situations which are nearly impossible for most people to imagine or grasp otherwise. I said I hope the blog prompts readers to put themselves in other's shoes, to recognize their own good fortunes and perhaps inspire empathy, humility and gratitude. I should have added that I aim to reach people who find themselves in any kind of stressful, challenging circumstance, hoping they find solace in my words and perhaps feel less alone.

Another reader, a poet whom I've never met, sent me a personal email in which she said:

I hope most caregivers have grace and understand and allow room for what you need to do to be with your son. Caregivers have a difficult job too—but it is not the same thing as being you in your relationship to Calvin. True healers one hopes for—and the healing is in support of you too. It has to be. You and Calvin are not in isolation from each other, and I (can only) imagine this requires dedicated teamwork. 

She went on to say:

I have been reading your posts for a number of years now—I don’t know how many years. Your honesty about yourself and others—not sham “honesty” to excuse cruelty, but true and difficult honesty—is your integrity. You don’t make this shit up. You hold yourself accountable. I hope most of your nurses and other supporters understand and can be there with you.

Her words brought me to tears; I sincerely hope I live up to them.

While I digested the various comments yesterday, one in particular, I realized that my post was missing something. I needed to helicopter out to see the bigger picture rather than hovering at microscopically close range. I'm not saying caregivers shouldn't forget themselves and focus closely on the job at hand: my boy's safety and well-being. I'm saying that from a more generous vantage point I'm able to see that, for all of my complaining and frustration, most of our many caregivers over the years—nurses, ed techs, teachers, therapists—have been lifesavers of sorts. If it weren't for their assistance, their affording me much needed respite, who knows how I'd be dealing? And I'm not saying I couldn't take care of Calvin without them. I know I could. I did for the first two years of his life and for months at a time since then. But I've little doubt I'd be in far worse shape without having had them, (not that I'm in that good of shape now.) Caregivers have allowed me to walk the dog, romp in the garden, write my blog, research epilepsy treatments, do house chores and shopping, catch a rare movie and sometimes a much-needed nap, and grab a drink and a bite with my husband. But perhaps the most important thing of all that has nothing to do with me is that they have always doted on my son.

As I finish this post—one not unlike most others in which I begin writing without fully knowing where it will end up—I see that it has done what I hope my posts do. It has prompted (my) introspection. It has humbled me some, revealing my thin skin and pettiness. And it has helped me to be grateful for my own good fortunes.

Calvin and nurse Rita

surrender

My mind is a-flutter with all the ills of the world: toxic air and water; floating plastic masses in violent, rising oceans; warring tribes; the attempt to suppress women; the disrespect of elders; the smugness of privileged others; the oppression of LGBTQ and People of Color; the maligning of refugees; our democracy's disruption; the suffering of unpaid workers taken hostage over a wall that most of us don't want; conceited cheaters, liars, fools running our government. 

And yet, for a moment the other day, I escaped into a different world, one where black and white became blue and green and red and gold, where silence was filled with music, talk and laughter, where enemies became friends, where troops from two nations surrendered to each other. This was a world where different languages converged yet people understood another, where fear and hatred melted into humility, camaraderie and concern. I saw this with my own eyes in the documentary, They Shall Not Grow Old.

To make the movie, the director, writer, and producer of the Lord of the Rings and Hobbit trilogies transformed 100-year-old film footage from World War I by digitizing, colorizing and adding sound. The result is chilling—the looks in soldiers' clear eyes, the ravaged battlefield strewn with bloody, rotting bodies and razor wire, the muddy, lice- and rat-infested trenches, the histories told by veterans.

What appeared on the big screen mesmerized. Most striking to me, however, was the part where British soldiers captured German ones. In no time, it seemed, the men and boys from opposite sides were communing with each other. Some of the Germans spoke a bit of English. They told their captors of their families, of their children, of their work. Neither side understood why they were fighting. The boys and men in khaki and gray-blue uniforms exchanged hats, shared cigarettes, ate together, helped the wounded in each other's ranks. I imagine, by finally understanding one another, they came to love each other as brothers.

That night in bed I reflected on the film and on the recent social media frenzy around the interaction at the steps of the Lincoln Memorial between a handful of Black Israelites, a throng of Catholic high school boys wearing MAGA hats who'd been bused in from Kentucky to attend the March for Life, and a Native American elder who was there with others for an Indigenous People's March. Several videos caught slurs and smirks, chants and taunts that were tossed between the bickering Israelites and amped-up mass of MAGA boys. It seemed the Native elder tried to intercede, tried to part the crowd with peaceful drumming. One boy did not yield. He stood his ground. He did not surrender. His classmates seemed to mock the elder. Across the Web, different takes and narratives bent opinions in one direction. Others bent them back again. Villains became heroes; heroes, villains. In my curious scouring of the coverage, I found this most compelling and thoughtful piece about the rumpus, written by Marcia Mount Shoop, an ordained Christian minister. And though I'm not religious, her piece says it all for me, and every White American would do well to read it.

My thoughts drifted to the wall again. I imagined those hurting furloughed federal workers living on the verge of nothing with no pay for their labor. I thought about the people railing against migrants and refugees, insisting a wall is what we need. I pondered a president who fearmongers and vilifies refugees as hardened criminals while serially giving White Supremacists impunity. Like in the documentary I saw, I wish the folks who swear we need a wall could meet these frightened and fleeing migrants, could break bread with them, could share a cup of beer or wine, could surrender to each other; perhaps their hearts would become less hard. Perhaps they'd work to find a solution to aid their brethren save putting up a wall and razor wire.

And just before I closed my eyes I thought of my disabled, non-verbal, autistic, seizure-racked boy, Calvin. So sweet. So mild. In ways, a foreigner from another tribe. I recalled what I sometimes ask and tell his classmates so they don't neglect, badmouth or mock him. 

"Can you guess why I think Calvin is the best person I know?"

"Because he is your child?" some of them reply.

"Because he deals with so much but is still happy?" others respond.

"Nope," I say, "Calvin is the best person I know because he doesn't have a mean bone in his body and, no matter what, he loves everyone." 

The students usually fall silent. I go on to implore them to be kind and generous, to befriend others who are different from themselves—ones with different colored skin, different hair, ones who come from different nations, who speak different languages, who look, sound, dress, act, live, love and worship differently. 

"We all have the same heart inside," I end, hoping they'll surrender.

letting go

After reading my most recent post, a little less stress, about giving up on logging Calvin's behaviors, etc., in a daily journal, a friend my age, who some years ago lost his daughter to opioid addiction, shared his thoughts about what I had written. He said: 

Letting go. Acceptance. It comes last, and in endless layers, one thin peel at a time. I know. Believe me: I know some version of this.

We hold on to magical thinking, and only in release ... slowly, sequentially, only as we are able, feather by feather ... is there relief.

I think I know ... I can't say I for sure know, but I think I know ... I think I understand this sort of surrender of which you speak, and the modicum of peace that follows.

Time and readiness. Patience and prayer. For all of us.

His gorgeous words were particularly moving to me. I hadn't considered my decision to give up the daily task of logging in a journal as a kind of acceptance of Calvin and his stubborn condition of intractable epilepsy. I thought of it more as a way to reduce my level of stress. However, in my first day of not logging, I felt more present in my son's life, not feeling compelled, whenever I saw what I thought might be a seizure harbinger, to run to my journal to jot it down. The result was something I hadn't fully expected, which was a kind of admission and acceptance that I didn't have full control over my son's epilepsy, and that journaling—though it once served a purpose—might no longer be necessary or helpful, and that Calvin will be okay even if he seizes. Rather than logging every suspicious behavior, I've just noted them in my head, sat with each for a bit, then continued to engage with my child—embracing, kissing, tickling. It was a relief not to be hyper-focused on documenting. I was focused instead on my son without suffering some of the angst I usually feel. Putting the journal away, to a great extent, has allowed me to let go.

With new insight, I reread what my friend wrote. Certain words stood out. Acceptance. Endless. Thin peel. Relief. Surrender. Peace. I felt all of these things the first day I gave up logging Calvin's woeful and suspicious behaviors. In giving up that routine, I also give up emphasizing in my mind and on paper the negative aspects of Calvin's days, therefore depriving them of a certain agency. So, too, do I relinquish a certain amount of cynicism leaving more space for hope, optimism and healthiness. Maybe Calvin will feel this effect, too. Perhaps he'll seize less. We run in such close circles, inches or feet away from each other at all times, I can only imagine he'll benefit.

Photo by Michael Kolster

i have a dream

On this, Martin Luther King, Jr. Day, I have a dream—a dream of leaders who espouse decency, humanity, reason, love, kindness, honesty, integrity, compassion, wisdom, inclusiveness, justice and equality. I know plenty of these good people exist, and so I will meditate on them. With folks like Martin Luther King Jr. in mind, I will continue to champion the causes of equality, fraternity and charity. I will go down on one knee for justice. I will support those who personify the very best in us.

I, too, have a dream, and with legions of others, I'll work to make it come true in two-thousand eighteen.

ridiculous existence

As absurd as it sounds, on sunny autumn mornings when my kid is home from school—this time because the whole town's power went out in Sunday's storm bearing heavy rains and sixty-five-mile-an-hour winds—I follow him holding a large piece of cardboard as he crawls around, trying to thwart his incessant effort to stare at the sun. It is a ridiculous existence to be employed as his shadow, blocking the sun, stymieing his biting and banging, wiping his drool, spotting him up and down the stairs, catching him before he trips and falls. It is hard hanging out with a kid who can do almost nothing, especially when there is nothing to do.

Yesterday, we took a trip to the grocer. Once inside, Calvin had a mini tantrum, having not recognized the place since it was somewhat dark inside, the generators only able to run a few lights and a handful of registers. We couldn't buy dairy or meat or greens or anything frozen since the store was trying to preserve its resources. The lines were long, but two nice gentlemen, seeing me with my gimpy son peg-legging around in his boot splint and trying to bite every surface in sight, offered to let me cut in line. I gladly accepted their gesture.

As we left the store I told Calvin how proud and grateful I was for his compliance and patience. Hearing my praise, he gleefully stuck out his tongue and smiled. 

On the drive home I imagined there were plenty of folks complaining about their loss of power, about the roadblocks diverting traffic from downed trees and power lines, about damaged landscapes and houses. Standing in line in the darkened store had made me think of how goddamn lucky we are compared to people in places like Venezuela, Yemen, Puerto Rico, Iraq, Appalachia, Syria, Haiti and other places racked with war, genocide, disease, corruption, natural disasters and famine. We enjoy a ridiculous existence. We have a roof over our heads; the enormous spruce in our back yard, which had the top twenty-five feet of its three leaders ripped off in the storm, luckily missed our bedroom by mere feet. We have food in the pantry and running water. We have a neighbor who already chopped up the spruce and will soon be hauling it away. Michael has a studio up the road that has power. We have a wood stove for keeping us warm and a gas stove top for frying eggs and grilling bread and brewing coffee and warming milk and heating soup. We have cozy beds and pillows and comforters, and matches and candles and lanterns and flashlights and headlamps to see our way from room to room. We have medicine, wind-up clocks, dry shampoo, telephones, clean clothes, bourbon, and there's even some ice cubes left to pour it over. In addition to all we have, it is somehow luxurious to spend a day or two without email or social media or television news, and a quiet evening bathed in nothing but candlelight and warmth from a wood burning stove.

In other words, we have nothing to complain about, not even monotonous hours spent shadowing our kid as he makes countless loops around and around and around the house.

good fortune

Though I'm known to kvetch about this and that, I try to be mindful of my fortunes: dear friends, an amazing community, a loving husband, cook and provider, a cozy home, a sweet kid, and the ability to celebrate often without having to worry about where I'm going to sleep at night or where my next meal will come from. Aside from Calvin's poor health and disabilities, his seizures, the treatments and their side effects, and his active benzodiazepine withdrawal, one could characterize my other concerns as first-world problems.

So, perhaps the passing of the summer solstice, which I spent at my friend Lauren's house wearing a shared garland, drinking mojitos and eating popcorn aside a crackling fire, seeing old friends and meeting new ones, can be for me a kind of reboot. Perhaps I can emerge from a place of slight guardedness and cynicism to one more welcoming of my changing surroundings, which is not to say that I'll surrender my passions, political or otherwise.

And, as I remind myself to be grateful, I'm cognizant that Calvin has had only two grand mals thus far in June, which is notable considering he had as few in May—a record low since before starting cannabis and weaning his benzodiazepine over three years ago. In return for that gift of sorts, I knock on wood, clasp my hands and bow my head in recognition of my good fortune.

letting go

In these trying times of political strife, climate change, war, famine, and stark inequalities, my son—despite his seizures, erratic behavior and significant disabilities—serves as a great elixir to intermittent despair. When at the hands of badgering, smug know-it-alls (including but not limited to the Poser in Chief), I look to Calvin to soothe, to calm, to remind me what is important and what should simply be let go.

You see, Calvin has no grasp of abstractions, no awareness of the passing of days, no concept of the outside world, of corrupt and greedy players, or liars, or fools. He does not discriminate. He does not hate. He does not manipulate. My boy simply sleeps when he is weary—save the times when drugs and their withdrawal mess with his system—eats when he is hungry, walks when he feels strong, and asks for hugs when he most needs one. Other than the most primal of human instincts, he has no care or worry in the world. 

So when the world's atrocities wrench me, and when situations or people bait and irk me, I turn and behold my sweet, handsome, impish, drooly, precious boy. He prompts me to remember what matters most, which is not amassing money or power, impressive homes or fancy cars, attribution or persuasion, aggrandizement or adulation; it is love and kindness, patience and understanding. It is existing to ease another's soul. It is the Zen of living deep and in the moment. It is the art of letting go.

July 2013

thirteen

This morning at one-thirty, exactly thirteen years after my water broke forcing us into an ice storm and then me into an emergency C-section, Calvin had his umpteenth grand mal.

Incredibly, Calvin has made it to his thirteenth birthday. Unlike what most parents might think, the time has not flown by; caring for him has a way of slowing down the evolution of things. Moments are protracted. His development nears stasis. Our lives, in many ways, are inert. This time warp, though, is also a gift allowing me to practice mindfulness, to luxuriate in a square of warm sunlight, to contemplate the form of a shadow, to practice the Zen of chopping fruit, to study my boy and his every move, and to suspend myself in his embrace.

Today also marks six years and four months of writing this blog. Sixteen-hundred-and-twenty-two posts later I am a more fulfilled person and hopefully a better writer. In that span of time, Calvin has suffered a legion of seizures—possibly multiple thousands—ingested tens of thousands of pills, endured sleepless nights, bouts of misery, bruises and bloody noses and one broken foot. But for all his aches and pains my boy, it seems, is doing ever so slightly better with each passing day. I see it when he looks me straight in the eyes, when he makes new noises which give the impression he is trying to talk, when he accompanies me to a new store and doesn't grouse, when he pushes the grocery cart almost by himself.

This betterment I credit to our decision nearly three years ago to begin weaning Calvin off of his benzodiazepine, clobazam. He’ll be rid of it completely sometime late this year. He continues to improve as we inch toward his final dose as evidenced by his sound sleeping, improved balance and walking, his calmer behavior. I also credit the cannabis oils we’ve been giving to him since beginning the benzo wean. One is a THCA oil that I make myself with cannabis flower from Remedy dispensary, who I trust implicitly to supply healthy, safe, consistent herb for my son. The other is a CBD oil I get from the good folks at Haleigh’s Hope, who make an oil using a clean CO2 extraction method from a hybrid of high-cannabidiol strains known for their efficacy in treating stubborn seizures. My sense is that both of these oils have helped Calvin during his benzodiazepine wean by ameliorating his withdrawal side effects and/or keeping his seizures relatively stayed.

Calvin's milestones cause me to ponder my own stasis, and my itch to get back to a writing project I’ve neglected for too long. And so I’m tempted to hang up the blog for a spell so I can focus on completing the half-finished manuscript. It’s hard to give up the blog, though, even if only temporarily; It feeds my soul on so many levels, including the good mojo I get from beloved readers. So maybe instead of goodbye I should just say so long, and allow myself the freedom to check back in and post something periodically, or maybe I should change the format to be more like a photo Tweet. Who knows? In any case, I might not have the nerve to abandon it all together, so please check in, and when you do, I invite you to read older posts.

So, happy birthday my sweet boy Calvin, you who are my muse, my haunter of dreams, informer of my world. You inspire me in myriad ways. I'm so grateful to have spun around the sun next to one as pure as you.

Calvin's first day, Photo by Michael Kolster

that he can

That he can sleep well and dream
 

and crawl on all fours

That he can drink, swallow and chew
 

and can open some doors

That he can walk and climb stairs

and can eat finger food

That he has some good days

though they might be few

That he loves to be touched

and can giggle and smile

Because there once was a time

when I feared those were gone

That he can trudge down the street

In the cold and the snow 

In his first pair of boots

Like never before

That he can see, hear and feel

and can sign a few words

That he has a voice

and knows he is heard

That he’s pure to the bone

and so to behold

That he craves to be held

by those whom he loves

That he likes to be free

to do what he does

There’s no one, I bet

who is quite like my son

Calvin, today, after his first-ever walk down the sidewalk in the snow

tree of life

The nuns taught us there are two ways through life—

the way of nature ...
and the way of grace.
You have to choose which one you’ll follow.
Grace doesn’t try to please itself.
Accepts being slighted, forgotten, disliked.
Accepts insults and injuries.
Nature only wants to please itself.
Get others to please it too.
Likes to lord it over them.
To have its own way.
It finds reasons to be unhappy ...
when all the world is shining around it ...
when love is smiling through all things.
They taught us that no one who loves the way of grace ...
ever comes to a bad end.

—Spoken by a mother grieving the death of her son, from the film The Tree of Life, by Terrence Malick

To me, Grace and nature are one in the same—no way to separate them. Nature’s universe encompasses all—the rocks, the rivers, the forests and deserts, birds, animals, fish, earthquakes, tsunamis, tempests, light, energy, the clouds, stars, planets, galaxies, black holes and supernovas. Nature does not discriminate between the healthy and the sick, the good and the bad, the wealthy and the poor, the devout and the secular.

Mindful of that, I can accept my precious boy who, through nature's indifference, became less of what he could have been yet more of what he is: loving, seemingly cognizant of little, living in the moment, wordless, wanting only essentials, simple, pure, changing with the passing of time, yet not changing at all. Like a tree whose limbs are beautifully twisted and gnarled by ages of drought, freezing and the peril of storms, covered in soft lichen as if jade lace stitched onto a taffeta gown, Calvin’s beauty is one of a kind, touching, timeless, makes me tremble at times.

And if I must one day see him go first, if his time here will be only fleeting, I can feel at peace knowing he’s returned to that from which he came—the earth, the sky, the moon—and I’ll carry him around as I had once before, as if he is my heart's inner star and soul's universe, and just as much as he is now, he’ll continue to grow inside me like a little tree of life.

Photo by Michael Kolster

bodies of water

Adrift with my boy in his boat of a bed, he shivers and shakes in the wake of his brain’s storm. We’ve kissed him and dripped cannabis oils between his parted lips hoping it'll calm the seas of the seventh day. I drape my wrist over his hip and feel his wicked twitches, keeping my eyes peeled and hoping his don’t open again to seize.

With my hand on him I fix to heal and calm, sending through my palm what my mind’s eye sees: bodies of water like glass.

Eyes closed, I glide across Pleasant Pond, wind smoothing back my hair, but then I remember its clear skies clouding into a storm and so I go, flowing back to Phantom Lake, deep and dark and serene, where a water ski below my feet slides in serpentine. Just down the hill my sleeping giant Sammamish rests, its faint ripples ironed by mist and then, amidst a desert of dry falls, Deep Lake's face is wreathed with blossoming clouds. Back in Maine, Quahog bay, like the creatures it keeps, is silent, sleek and green. And at last, a river of glass, Chelan, crystal clear and cool. I let these bodies of water flow through me into my sleeping son, whose shivers, I hope, are nearly done.

In the light, his cannabis oils glow golden, and I imagine the drops he drinks as a river of a thousand suns setting over the deep.

Qhahog Bay

rise above

An individual has not started living until he can rise above the narrow confines of his individualistic concerns to the broader concerns of all humanity.

—Reverend Dr. Martin Luther King, Jr. 

Saturday, when pulling into my friend’s icy driveway, I saw a large cardboard sign propped in her car’s windshield with the neatly handwritten words, CHALLENGE RACISM. We were headed to the movies to watch The Imitation Game. It wouldn’t have been my choice of movies, but I wanted to spend the evening with Lauren who I hadn’t seen in far too long, so the choice of movie was of little import.

The film was just as I expected: a mediocre period piece based on the true story of a white man—albeit a gay one—written and directed by white men and with a predominantly white male cast. I watched the predictable story unfold, deeply aware that the movie Selma, about the Civil Rights Movement and which I’d preferred to have seen, had, for all intents and purposes, been snubbed by the Academy of Motion Pictures members—no great surprise considering the Academy is 92% white, mostly male, and the average age of its members is 62. Could it be worse than our present congress? I fear, yes.
 
On the drive home we talked about the sign in Lauren's windshield. She told me that every Friday evening she stands with a group of peace activists at the corner of Pleasant and Maine Streets brandishing various signs like the one in her window and others such as BLACK LIVES MATTER. Lauren, who is white, went on to say that often she gets honks and thumbs up from drivers, but that once she was flipped off and sometimes she is heckled. I told her that she should write the word RACIST on the backside of her signs so that she can flip them around in response to the haters' vitriol. But she said she’s usually too shocked to react and even then her impulse is to diffuse the situation peacefully. She's a better person than I.

Nearly forty-seven years ago Rev. Dr. Martin Luther King, Jr. was assassinated in Memphis at the age of thirty-nine. He was a champion of the African American Civil Rights Movement and the Peace movement and his aim was to achieve equality for his people who had been enslaved in this country for centuries and who continued to be literally and figuratively stomped on, pushed aside, held down, beaten up, burned out, fire hosed, strung up and thrown in jail by white people, most of them men. 

Now, in 2015, many things have shamefully gone unchanged. The racial caste system, which originated with slavery, evolved into segregationist Jim Crow law before morphing into the racist lies and ills of the War on Drugs, still exists. Black boys and girls are targeted, punished, suspended and expelled from school at alarming and disproportionate rates compared with whites, even as early as preschool. Black schoolboys and schoolgirls, who are seen as miscreants, are harshly punished, often ending up in juvenile detention centers while their white counterparts get slapped on the wrist. Black boys and men are wrongly stopped and frisked, pulled over, harassed, often falsely accused of petty crimes and/or resisting arrest. They are tasered, gunned down or choked to death by aggressive, racist white cops. The ones who survive are convicted, often falsely, incarcerated and sent to prison to serve ridiculous sentences including—again, at alarming rates—execution. Those who are released are legally discriminated against for the rest of their lives at almost every level of society: housing, education, health care, employment—even one of the only avenues they can take to change the very system that oppresses them: denial of the right to vote. Some, like the author of one of the books I’m reading with the selfsame title, call this systematic oppression The New Jim Crow.

Today, Martin Luther King Day, I think about the ongoing subjugation of black people. And, because of who I am, who I love and who I have become, I also think about the legions of others—disabled people, women, Muslims, gay people, transgender people, immigrants, Hispanics, poor people, Native Americans, homeless people, disabled people—who continue to be marginalized by a society governed predominantly by oligarchs and their greed, selfishness, intolerance, conceit, apathy, contempt, ignorance, self-righteousness, desire to exploit others and their lust for power. 

Then, I think about how much better we can do as a nation, as a people, to incite change. If only each and every one of us—millions—could rise above our individual concerns to see the plight of others, then go one step further and courageously, like Martin Luther King, Jr. and Lauren, choose to do something about it, if only through our words.