in my path

"Why did you help me?" she asked. 

"You were in my path," he replied.

Those were the words uttered by the main characters in a movie I recently watched called, Land. More than anything else in the film, that snippet of conversation struck me, triggered me into thinking about everyone who has helped me survive and thrive in this life, particularly since Calvin's arrival. 

Countless people whose paths I've crossed came to mind—everyone from my husband and extended family to my childhood and college friends, teammates, and the swimmers I coached way back when. I thought of former boyfriends, colleagues, roomies and besties from Seattle, San Francisco and Maine. I considered my husband's colleagues and former students, Calvin's doctors and nurses, our lovely neighbors, and the clerks at the grocery store. As I write this I think of the friendly strangers I've encountered by way of this ten-year-old blog, and while driving the back roads during the pandemic. Every single one has helped me get through this difficult life of raising a disabled child with an impossible, chronic condition.

Perhaps it was you who held my elbow or hand while I laughed, wept or wailed. You might have silently listened to me grieve. You may have offered to do my shopping, cooked us meals or left goodies on the doorstep. Perhaps you've brought me flowers, written me kind and loving sentiments in a hand- or type-written letter, email, message or text. You might have hugged the breath out of me just when I needed it most. You may have unwittingly buoyed me in the fleeting moment you ran, skated, strolled, drove or biked past.

And then, of course, there is Calvin, my peculiar little boy who has helped me—bettered me (mostly)—in myriad and indescribable ways.

In return, I certainly hope I've helped you, friends, loved ones and readers, in some small ways, if only by a few written words or by something as simple as a photo of a field full of dandelions dipping into the bay.

brokenness

so much brokenness.

my child's brain. myriad hopes and dreams. promises. hearts. this nation. too many american families, homes and livelihoods. the criminal justice system. the federal pandemic response. all of this comes to mind in the dim, quiet moments while holding my son as he seizes.

so much brokenness. 

Calvin's strident seizure-gasps, like that of a death rattle. white police officers suffocating another black man—hands cuffed, face pressed hard into asphalt pleading, "i can't breathe." what is wrong with people?

so much brokenness. 

black joggers being stalked and shot. white women calling the cops on black men and making up dangerous stories about threats and assault. black people getting arrested on their own front porch, harassed on their campuses, in their library or dorm, in the foyer of their own apartment, shot while watching television in their homes. white men then questioning whether these blatant acts are racist. white men and women condemning black folks who take a knee to peacefully protest their ongoing oppression and violence against them. what is wrong with people?

so much brokenness. 

folks contemptuous of the act of wearing masks meant to protect those most at risk of exposure to this dangerous virus, like calvin. scornful of masks which are worn because we are supposed to care about and for each other. menacing men armed with AR-15s protesting government protective measures. a president stoking that very dissent. states opening up regardless of the virus' trajectory. folks congregating without masks as if uninfected or immune.

so much brokenness.

greed. corruption. deceit. wickedness. inequity. bigotry. bullying. conceit. narcissism. self-dealing. defrauding. sloth. petulance. recklessness. all these from our so-called leader(s). what is wrong with this man, these people?

so much brokenness.

and yet, that which is broken can usually be fixed. with love. truth. charity. patience. righteousness. courage. unity. science. knowledge. wisdom. ingenuity. leadership. accountability. selflessness. humanity. hope. kindness. compassion. empathy. like holding a broken child, a glimmer of dawn seeping through the shades as he seizes.

Merrilyn Downs prays over a memorial for George Floyd
Photo, Zach Boyden-Holmes, The Des Moines Register - USA TODAY Network

weekend update

At noon, it's fourteen degrees out. Last night it got down to two. We're sick as dogs inside this lonely house. Sidewalks are icy. While walking Smellie yesterday the windchill factor was well below zero. I feared my jeans would freeze to my kneecaps. The dog has become a little bit gimpy and we don't know exactly where in her leg it hurts, or why. We think it's arthritis as the result of Lyme. Can't get outside today to walk her since I don't have a nurse to watch Calvin.

Michael is on his way home from being gone for nearly twelve days. I hope he brings Hawaii's sun and warmth along. The other night a friend asked if I resented my husband's travel. I told her only sometimes. It's his work, and it makes him happy and he misses home and wishes I were with him, with or without our boy. Alas, because of Calvin, it can't be so.

While Michael has been gone, his parents have been regularly checking in on me by phone. Several friends have walked Smellie when I can't, braving the wind and cold. A dear friend and his daughter shoveled my snowy driveway. One lovely dropped by some homemade spaghetti and cookies. Another brought me tulips, English muffin bread, tea, honey, Meyer lemons and Honeybell oranges. Still another showed up with a warm loaf of lemon poppyseed cake. I'm so lucky to be taken care of by friends in this small town.

Last night Calvin had a grand mal seizure. Strangely, I didn't see it coming. It was early enough in the night that I feared he'd have a second one like he did the past two times. So, I gave him a little extra homemade THCA oil and spooned with him. He didn't have another one.

I hope to get some sleep tonight. I feel wrecked, with achy eyes and a voice which is nearly gone. Thankfully, Calvin is in a mellow mood, thus has been pretty easy to take care of. Of late, I've seen his behavior trending toward more calm. From his room next door I hear him yawn. Time to try a nap of my own while Smellie is out walking with friends. Soon she'll be on her way home.

From the field behind our home.

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

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

unease

Again, I lie awake hours before daybreak. The dark of night seems to magnify my angst. When for various reason I can't sleep, I worry about whether Calvin will seize. Under the covers, I flinch when Nellie yelps in her sleep. I fret about the list of things I need to get done that I don't seem to have the time to do, the things that have piled up during the five-and-a-half weeks that Calvin didn't go to school—sweeping, mopping, dusting (what's that?), writing, reading, researching, filing, calling. I lie in bed, my mind racing, pondering the troubles of the world: war, famine, genocide, waste, poverty, pollution, misogyny, racism, corruption. I think of the human impact on climate and the havoc it is wreaking on our gorgeous Earth. I consider refugees desperate to find better lives for themselves, whom the people of our town and nearby ones have graciously—and some begrudgingly—received.

The other night, after I heard the rain begin to fall, I laid there on the brink of exhaustion and yet buzzing, lamenting the plastic microbeads, bags and bottles choking the ocean, the single-use plastic caps and containers washing up on beaches, the straws and swizzlers and six-pack holders, the syringes, balloons and latex gloves—you name it—that sacred sea life is ingesting and strangling on as we dream. I pondered the tons of toxic materials being released into our rivers, air and seas, and the sleazy politicians who are making that more possible. I grieve the burning of the Amazonian rain forest, the flushing out of its creatures and native peoples. I consider the rabid appetite of greed.

Yes, I lay awake in a warm bed in an ample house having filled my belly with delicious food my husband cooked, thinking about Yemenee people starving to death, and Rohinga refugees being forced back to their tormentors, and hurricane victims having just lost loved ones, homes and belongings. I consider how effing lucky I am, and wish I had the means, like a handful do, to fund everything. I lament that, in this nation of abundance, our fellow humans still live under cardboard boxes or on cold sidewalks while billionaires and certain politicians continue to enrich themselves at the expense and exploitation of everyone else.

While scrolling through my photographs yesterday, feeling weary of the world and of all-things-Calvin, I came across some I'd taken at last year's Bowdoin student art show. The small, framed piece that hung on the far wall of a room where my husband taught a class called Art and Time, was titled, Receipt for a Sunday and the Things Carried There, by a talented and ambitious student, Blanche Froelich, class of 2019. Rereading it reminded me to be grateful, humble, thoughtful, and generous to others; none of us live life without our own struggles, big and small. And the night is not the only time we feel unease.

Detail, Receipt for a Sunday and the Things Carried There, by Blanche Froelich

landon's gift

Again, our day began at three a.m. with the arrival of another focal seizure, the first of two, this one several minutes long. With the help of some extra homemade THCA cannabis oil, however, Calvin had improved by eleven, and so we set out for the Windsor Fair, a town or two away from the fair we went to a week ago.

Calvin did far better this time, even holding our hands and walking, though wonkily, willingly at times. Throughout the day we zigzagged our way between sheds of lounging cows and goats, cages of enormous sows with their week-old suckling piglets, and a raucous avian barn. All the while Calvin seemed to take it in, gnawing happily on his rubber chew toy and nibbling on snacks I'd cut up for him.

Several times I watched children and adults gawk at Calvin as if he were some freak in a carnival sideshow. When this occurs, as it does anytime we're in public, I feel a mix of sadness and anger. Sometimes I'm moved to act spitefully. I'd like to think they don't mean any harm; maybe it's human nature to rubberneck at a spectacle. Still, I often feel like an alien with my sweet little peculiar Martian, orbiting on the margins of things rather than feeling an integral part of the larger world. 

When we had seen enough of the sights, we stood in line to get an ice cream cone. A handsome, dark-haired boy approached us and asked if Calvin might like to have the stuffed animal he'd won in a midway game. I fumbled to answer, fairly certain that Calvin wouldn't respond to such a toy, his go-to playthings being hard plastic and rubber ones. But I was compelled to accept the boy's kind gesture because I remember well what it was like to be his age.

The boy introduced himself as Landon. I suggested we try handing the stuffed animal to Calvin to see how he'd respond. Landon crouched down closer to Calvin offering him the toy, speaking to him directly and asking if he would like to have it. Immediately, Calvin hugged the larger-than-life emoji and began mouthing it with fervor. We were all amazed and happy when Calvin received the gift so emphatically. 

Landon, who is as sweet a boy as you'll ever meet, and worldly beyond his years, told us he'll soon be thirteen. We greeted his dad and grandfather who were at his side, and as I spoke with Landon, his father told Michael that he had no idea Landon had planned on giving away his prize.

I took a quick picture of our newfound friends before shaking their hands and saying goodbye. After they turned to leave us, I looked up at Michael and noticed that he'd gotten quite choked up. Seeing his emotion, I began to weep openly at Landon's selfless gesture.

Random acts of kindness like these make our world go round. No doubt I'll rest my head on my pillow tonight thinking of Landon and how, if things had turned out differently, maybe Calvin would have become as extraordinarily thoughtful, fearless and empathetic as he.

If you are reading this, Landon, I hope you know how deeply you touched us and how much you made us feel welcome, important, and included, while so many others look at us as if we don't belong. You yourself are the gift you gave to us, one far larger than the sideshow prize that left your arms. How very lucky we are.

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

coming home

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

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

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

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

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

alive and loved

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

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

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

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

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

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

Asian slaw

thank goodness

Thank goodness for waking up in the morning with the foggy memory of another dream set in San Francisco.

Thank goodness for sunshine on blistering, cold, windy days, for melting snow and ice, for the coming of spring. Thank goodness for rolling fires in the wood stove, and the sound of it creaking aside the unmistakable harmonies of Steely Dan.

Thank goodness for kick-ass nurses, for shaggy wackadoodles named Nellie, for my eighty-six-year-old neighbor Woody who pours me a shot of bourbon over rocks any time I show up at his door, then sits and listens to my meaningless prattle, and sometimes wipes my tears.

Thank goodness for wise parents of children stricken with seizures, and for an amazingly responsive, informative, kind, generous, smart mother who first made a cannabis oil for her child and now makes it for the rest of our kids.

Thank goodness for a scary-as-shit dystopian horror film that makes at least some of its audience think deeply about Us—about racism, privilege, poverty, oppression, slavery, walls and forgottenness in this crazy-ass, regrettable time in our nation.

Thank goodness for seizure-free days, and for my boy smiling at me when I walk in the door.

Thank goodness for good husbands, loving friends, in-laws who check in, brothers who call to talk. Thank goodness for the same salad I've made nearly every night for years (I kid you not) that always delivers (mixed greens hopefully including arugula, red onion, blue cheese, avocado, cherry tomatoes, croutons and Michael's special olive oil-garlic-mustard-red wine and balsamic vinegar-salt and pepper dressing.)

Thank goodness for the field of amazing, talented, thoughtful, progressive, intelligent individuals lining up with hopes to lead this nation to better things for all of us, not just for a select few.

Thank goodness for friends who love me from near and far, for ones who offer to stop by on nights when I'm flying solo, for ones who dream of me and Calvin and who take us to the farmer's market, for ones who come for coffee, who walk the dog, who join me at a bar or table, who see me grouse and yell but don't pass judgement, who make me laugh and cry. You know who you are.

My pal Woody

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.

empathy

The sky opened up at one a.m. I rose from a deep dream to shut windows in the house so the rain wouldn't come in. As I was lowering one sash, I heard the quick slap-slap of a runner's gait on wet pavement. Peering out, I saw a guy run past under the streetlight. I recognized him. A youngish man compared to me, I'd met him in town years back. We had exchanged pleasantries. Later, I had greeted him several times as he ran past me on the street and in the trails around the field, his waif-like frame, bony limbs and gaunt face as distinctive as his long wavy hair and shy smile. Had he been caught in the deluge? Or had he—perhaps anorexia's captive—been compelled to run despite the storm's arrival? Or, had running in the middle of the night been his liberation, his savior, like writing and gardening have saved me from the grief-grip-loss that my son embodies?

When I put Calvin on the bus yesterday we were no doubt floating within a cloud, its sprays of mist collecting on our heads, dripping from trees, droplets adorning webs and beading up on leaves. If not for a good breeze, the humidity would've proven oppressive. Later, on my way back from a walk with Nellie, I stopped to talk with a neighbor. A nicely-dressed woman drove up curbside and exclaimed that she was looking for a notorious local man so she could run him down. The man she hunted had been seen recently knocking and entering open homes in the area, taking cash and jewelry, ostensibly to support his heroin addiction. Police confirmed that I'd seen the stranger earlier that morning knocking on the door of a home down the street. Though I didn't see him enter, somehow I'd thought his incessant knocking odd, so I memorized his description: white guy, medium build, brown hair, early forties, khaki shorts, dark hikers or sneakers, long-sleeved tee.

I winced when the driver, a colleague of Michael's who I don't really know, said she wanted to run this guy over. She claimed he was violent. I gently (hopefully) challenged her notion, but she could provide no supporting evidence. I tried to imagine what I would do if I were in his condition. I remembered a piece I heard about a former addict who described what addiction was like. I told the woman I thought it sad that the guy was in such a state that he needed to steal from others. She lamented she'd been dealing with him for years. I wondered what I'd do if I came across him, wondered if I'd give him a buck or two.

Troubled, I removed myself from the conversation, crossing the street to visit with Woody who was sitting on his porch. He was familiar with the man police were pursuing. The man's family, Woody said, had always had some sort of trouble as long as he could remember. I expressed my regret that anyone get hooked on opioids, knowing full-well—contrary to popular myth—that the average addict begins with opioids prescribed for pain by unwitting and/or cavalier physicians. Woody said the guy should get some help. I countered by admitting that I'd never been addicted to a substance, but that I imagine heroin must be nearly impossible to kick, perhaps even making it difficult to seek—or even want—help.

What flashed through my mind next was a glimpse of how others might view me and Calvin; I wondered what kind of judgment family, friends and strangers pass on us—what did she do wrong while pregnant? why is she so strict with her son? why so lenient? why is she so demanding and impatient? why is he so wild? why is she so skeptical, so harsh? why does she let him get away with this, yet make him do that?

I pondered compassion and what I see as today's empathy gap, which is widening in an increasingly polarized nation with a self-obsessed, callous man at the helm.

At the close of the day, while putting on Calvin's nighttime diaper and pad, giving him his cannabis oils and Keppra, and brushing his teeth, I listened to a piece on National Public Radio. Journalists spoke with the Idaho Director of Agriculture and to a pig farmer who described the hardship in the face of the warring trade tariffs that The Donald put in place. Hearing their distressing stories, I got teary.

"No one deserves to suffer like that," I said to Michael, "even if they voted for him."

Michael, though he agrees with me that support for The Donald is short-sighted at best, expressed his dubiousness that any of us is deserving of anything—beyond human rights such as healthcare and education—whether it be good or bad. I get it.

As the news segment closed, a wave of sorrow washed over me, leaving me wishing relief for the hard-working farmers, many who risk losing their businesses because the tariffs stand to strangle the decades-long, worldwide trading relationships they've developed. I went to sleep thinking of them.

Hours later, in the shiny black after midnight, I watched the jogger sail down the street into darkness, the driving rain matting his hair, his spine and ribs exposed beneath a soaking shirt. I wondered if he was cold. I thought of the petty thief rummaging desperately through strangers' homes just to get enough dough for his next fix. I wondered if he is lonely. I thought of the farmers, heads in hands, families to feed, crops and livestock and legacies in jeopardy, and I wondered how they'll cope. I thought of my sweet, innocent, unknowing Calvin sleeping upstairs, seventeen days since his last grand mal seizure. It's no matter, but empathy gave me some trouble falling back to sleep.

leaving home

Every day I hear or see something that reminds me how much we, as Americans, take for granted in this place we call home. 

Yesterday, the reminder was a social media comment about refugee and immigrant children being torn from their parents—even an infant suckling at her mother's breast—and being thrown in cages and behind detention fences. An acquaintance posted her opinion on the matter saying, "A loving mother would not put her child in the situation that would cause them to be parted. A selfish mother would play that game."

Her comment reminded me of those contemptuous folks who love to throw around the flabby platitude, race card.

I told her that if she spoke to some of the mothers fleeing other nations she would learn how wrong she is.

Later, while I was watering a parched garden, it occurred to me how spoiled some of us living in this nation are. We enjoy so many luxuries people in other countries only dream of—indoor plumbing, heated homes, fifty-seven million kinds of breakfast cereals, chips, wine, beer, coffee, tea, candy, cheese to choose from. Many of us have pets, cars, bicycles, warm clothes, cozy beds, doctors, medicines, computers, smart phones, jewelry, handbags, toys, sports equipment, table linens, gas stoves, porcelain sinks and bathtubs, pillows, wool blankets, shoes for every occasion, safe streets, good hospitals, nice restaurants, decent schools. Even so, we hunger for the newest apps, trendiest fads and latest gadgets.

What seems clear to me is the abysmal lack of imagination and compassion in the minds and hearts of those who condone the hasty and horrific separation of children from their parents—families who have left their homes and communities risking their lives to make it to a nation where life might be safer and better for their families. 

As with most trying situations, I think of Calvin. I imagine living in a country where Calvin has no access to medical care or treatment for his seizures. I imagine his epilepsy burning out of control and bringing him to the brink of death. I imagine a neighboring and prosperous nation offering great promise in treating his condition. What would I do? Might I risk fleeing to that land for the sake of my child's life? Perhaps I would. 

I then imagine living in a war-torn country where good people are extorted, children are regularly kidnapped and forced into sex work, gangs and militias, where mothers and daughters are raped, where food and water are scarce, where neighborhoods are gassed and shelled, where men are murdered, where homes and towns are burned to cinders. Might I leave home with my children to a neighboring and prosperous nation, leaving everything behind and risking it all for a chance at living free from fear and near-certain peril? Yes, I think I would.

When having a similar exchange on social media last year, a friend told me that he would not be a refugee because, "it is not in his upbringing or heritage" to do so. He went on to explain that he would not flee his homeland, but instead would remain to "make it better." Perhaps it is easier for folks to imagine this strategy having had no children. Or perhaps some suffer from an inability or unwillingness to imagine the grim reality of living in a war zone. Or maybe there are other factors which, though I've racked my brain to unearth, convince some that protectionism in the form of cruel and unusual treatment of children is how we as Americans should roll.

Today I read my friend's blog, a moon worn as if it were a shell. In it she posted a poem she'd read on another blog. She asked her readers to pass it on:

Home

no one leaves home unless
home is the mouth of a shark.

you only run for the border
when you see the whole city
running as well.

your neighbours running faster
than you, the boy you went to school with
who kissed you dizzy behind
the old tin factory is
holding a gun bigger than his body,
you only leave home
when home won't let you stay.

no one would leave home unless home
chased you, fire under feet,
hot blood in your belly.

it's not something you ever thought about
doing, and so when you did -
you carried the anthem under your breath,
waiting until the airport toilet
to tear up the passport and swallow,
each mouthful of paper making it clear that
you would not be going back.

you have to understand,
no one puts their children in a boat
unless the water is safer than the land.

who would choose to spend days
and nights in the stomach of a truck
unless the miles travelled
meant something more than journey.

no one would choose to crawl under fences,
be beaten until your shadow leaves you,
raped, then drowned, forced to the bottom of
the boat because you are darker, be sold,
starved, shot at the border like a sick animal,
be pitied, lose your name, lose your family,
make a refugee camp a home for a year or two or ten,
stripped and searched, find prison everywhere
and if you survive and you are greeted on the other side
with go home blacks, refugees
dirty immigrants, asylum seekers
sucking our country dry of milk,
dark, with their hands out
smell strange, savage -
look what they've done to their own countries,
what will they do to ours?

the dirty looks in the street
softer than a limb torn off,
the indignity of everyday life
more tender than fourteen men who
look like your father, between
your legs, insults easier to swallow
than rubble, than your child's body
in pieces - for now, forget about pride
your survival is more important.

i want to go home, but home is the mouth of a shark
home is the barrel of the gun
and no one would leave home
unless home chased you to the shore
unless home tells you to
leave what you could not behind,
even if it was human.

no one leaves home until home
is a damp voice in your ear saying
leave, run now, i don't know what
i've become.

~ Warsan Shire

I don't know what the answer is to our immigration dilemma. I do know it is wrong, harmful and dangerous to separate these children from their parents. And though I am not Christian or religious, I dig what Jesus preached and do agree with every word that Father James Martin has to say. We need to show humility, love and compassion for those fleeing the scourge of gangs, extortion, murder, rape and starvation in neighboring and faraway nations. They are our fellow human beings. At the very least they deserve loving kindness and dignity.

re-entry

I hiked to the top of Buena Vista park and sobbed, my chest tightening with regret for having ever left this place I think of as home. I lingered on the sidewalk across the street from my old Ashbury flat and wept some more. My eyes brimmed with tears as I sat across from Robert and held his hand for the first time in twenty years. Sitting in a car mere yards from a windy Pacific, Heather and I ate potato chips and drank white wine from red plastic cups, and laughed until we cried. Pam held me, both of us moist-eyed, as I lamented my departure seventeen years ago.

Along the way I stayed true to form befriending strangers—Lawrence, Ken, the woman at the ferry building whose name I can't remember, Enyeti (do I have it right?), Sean—all who made my San Francisco visit richer with their warmth. They were generous, kind, curious, interesting, fun-loving souls.

On a cloudy morning I paddled into the Bay. On another, I ferried across to Sausalito. I sipped espresso and wine in Cole Valley. I noshed a shrimp quesadilla at seventeenth and Valencia. I devoured Burmese noodles and curried shrimp in the Mission. I ate homemade pesto gnocchi and eggplant Parmesan in a North Beach icon. I climbed the hills of the city, and nibbled dim sum near the Embarcadero. I strolled a blustering Baker Beach eyeing a shivering quinceañera and a nude wader talking on his cell phone. I partied with my favorite lovelies who have known me since I came of age in my early thirties. I breathed deep gobs of cool air and listened for fog horns amid the intoxicating fragrance of sweet alyssum and star jasmine. I ambled through Golden Gate park's Japanese and botanical gardens. I did all these things with some of my favorite people ever; you know who you are.

Back in Maine, Calvin seized. He suffered a three-hour episode of what I can only describe as night terrors. Michael held him and kept things together. Nellie the dog snarfed up scraps of lobster and hot dogs, remnants of a college frolic at the fields. Later, she shat all over the house. Calvin then crawled through the loose, stinking feces, cluelessly slathering himself in doggie diarrhea before the nurse could intervene.

My red-eye flight home sat on the tarmac for over two hours. I missed my Newark connection and was rebooked on one getting in close to midnight a day later. Instead, I flew to Boston then rode the bus north to Maine. At home with my stubborn, sun-staring son, I went from zero to sixty suffering from exhaustion, impatience and frustration. My San Francisco chill-out was erased within minutes.

I'm slowly settling back into the reality of my existence—endless pacing behind my son, wiping up drool, changing diapers, dicing food, listening to Calvin's incessant humming, shielding my eyes and mouth from his rigid and errant fingers, waking and watching him seize—trying not to despair too much. Re-entering the atmosphere burns. Thankfully my husband, who I met in San Francisco over twenty years ago, took care to make my landing softer.

I hope before too long I'll again get back to the place that shaped me in so many ways and one I'll always think of as home. San Francisco—its crisp air, mild climate, scenic vistas, gigantic gnarled and ancient-looking trees, flowering, aromatic shrubs, glass and steel skyline hugging pastel homes, gleaming seas, outrageous food, fine folks from all over the world, buzzing neighborhoods, blue skies and fog, lush parks, clean beaches and chill vibe—is the perfect antidote to an oft stressful and limited life defined by my sweet, disabled, messed-up child.

The last time I was in San Francisco before this recent trip, December 2005, 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.

bfd and thoughts thereof

I know what you're thinking about that title, at least if you are someone who has a potty mouth like I do. BFD. Big effing deal, right? But it's not what you think. This time I am referring to the Brunswick Fire Department, who came to our house yesterday in their day-glo yellow trucks, lights flashing as they silently sidled up to the curb and bailed out in their yellow, tan and reflective gray regalia like so many astronauts.

They came because Calvin's effing-breath-of-fresh-air nurse Rita, upon hearing for days our furnace had been struggling, and having smelled the fumes from our basement, suggested we call the BFD to come check for carbon monoxide. After all, and as she so humorously put it, she had some skin in the game. Minutes later they arrived, one by one making their way through the mudroom door and into the basement with gas masks on. Sure enough, we had low levels of CO on both floors and a pretty high level in the basement, so they shut down our furnace amid sub-freezing temps and said not to turn it back on.

While the men forced out the toxic gas with a large fan, one of them carried Calvin, who had been lethargic and ataxic, out to the ambulance to keep warm. It brought back bad memories of too many 911 calls and trips to the ER due to prolonged seizures years ago. Inside the ambulance, Calvin propped against me, I called a few heating specialists who were recommended to me by friends on Facebook. I told them our dire situation while wondering if the carbon monoxide might have had something to do with Calvin's spate of seizures and his lethargy the previous three days. Thankfully, I got through to Al, from A&R, who my friend Sarah so highly recommended.

Shortly thereafter, Woody came over and offered for us to sleep at his place if our house had no heat overnight. Mary and Cindie drove by on Calvin's bus worrying, having seen the fire trucks. Another friend offered us refuge for the night if we needed it.

When the CO measured zero we were able to reenter our home. I thanked the firefighters (I had no idea how much I like firefighters!) and even hugged the one who carried Calvin back indoors. They were all very kind and gentle. I wish I had taken their photo.

Within the hour, Al came by to take a look at our disabled furnace. He had the wherewithal to stop by the fire station first, to get the skinny on our situation. Immediately, I knew Al was a good guy. He was congenial to Rita and asked her where she was from. He asked Michael all about Calvin. He was professional and kind. He knew what he was doing. He fixed the furnace in just over an hour! (I should mention that Rita had asked the universe for that to happen.)

Last night, I remembered having had a waking nightmare about the three of us dying from carbon monoxide poisoning. Our furnace had been uncharacteristically failing to keep up the past two or more weeks which included several sub-zero nights, some as cold as minus fifteen, and days which struggled to reach the teens. I had repeatedly suggested to Michael that something was wrong with the furnace, but until we woke up to a house that was fifty-two degrees, he'd been in some kind of denial. After Al and Rita had left, Michael apologized for not having listened to me when I first suspected a problem with the furnace, and for giving me a hard time when I pressed him about it.

"I'm sorry. I let you down, didn't I?," he said, then repeated the sentiment, earnestly.

His first two words would have been enough, but characterizing his own behavior as having let me down reminded me of what a good man and husband he is, reminded me of the wedding vows we'd both written.

In recounting yesterday's events, I am reminded also of the benefits of a well-oiled society. When our house is in flames or fumes, no matter if we are wealthy or poor, the fire department shows up. If we are being burgled or harassed, the police come to your door. Every week our garbage is picked up curbside. Our roads are paved and swept and plowed. In storms, our downed power lines are restored. No matter who we are, or what our means, we can be sure these things will be taken care of. It's about the betterment of society. We all pay into these services so that they will be available to anyone, thus making us safer as a whole. The same should be said of health care, which is a BFD (big effing deal). If we are sick or dying, we should be able to see a doctor for treatment or have a surgery or get chemo without having to worry about bankruptcy. It is for the betterment of society if we are all healthier individuals. Healthy people are able-bodied and are less of a drag on so many other social services as a result. Our nation could actually save money on healthcare costs if we supplied health care to all.

To be sure, children suffer and die daily because they are born into hard-working families who don't have health insurance. Are they or their families deserving of their demise? Is our moral compass so out of whack that we choose to let certain families languish from neglect? Perhaps the very worst Americans would welcome those outcomes, or at least turn a blind eye to those deaths.

Again, I think of those firemen carrying Calvin through the snow, just as I remembered their colleagues carrying him to the ambulance when he was tiny as a baby and seizing in their arms. Back then, and because we had health insurance, I never had to worry that the hospital would refuse us. I never had to worry about how much it would cost or if it might mean losing our home. The reality is, no one should have to. Our health is sacred, as is our safety, as are our homes. Why some folks think healthcare is a privilege for the well-to-do rather than a right for all, I'll never understand.

Photo by Zack Tooker

birthday gifts and ferris wheels

Though it began with my son having a grand mal seizure, my fifty-fourth birthday became a treasured one. Dear friends from my childhood growing up in Seattle sent me messages. Family members from afar, and homies nearby called to sing me the birthday song. Michael came home early from work and took care of Calvin while I did a little bit of writing, then showered.

Though I was dying to nap, by afternoon—thanks perhaps to cannabis—Calvin had rebounded from his seizure well enough to take him for a ride in the car. We headed up the river to Lisbon Falls, past Michael's new photo studio up to a favorite place called the Big Dipper where I got a hot fudge brownie sundae, a treat I hadn't enjoyed in years. Calvin sat on the picnic table bench—something he wasn't able to manage just a couple of years ago—while Michael spoon-fed him some of his coffee-oreo "noreaster."

Since Calvin continued to do pretty well, we went to the dvd store and rented The Princess Bride, my choice for something light to interrupt the nagging sorrow from recent events in the news and at home. At the grocer, Calvin was compliant and walking strongly and steadily as ever, a gift in itself.

At home, Lauren dropped in for cocktails, followed by Lucretia who arrived with a lovely bouquet of flowers and a basket full of heirloom tomatoes, poblano peppers, broccoli, onions and greens from her farm.

Later, Michael and I opened a delicious Bandol given to us years ago by our lovelies Steve and Gretchen, and with it toasted another spin around the sun. Glasses in hand, we stood outside in the dark, arms around each other while hot, bright flames seared a thick ribeye. When the smashed-potato fries were sufficiently crisp and the steamed asparagus tender (all Michael's doing, of course) we sat facing each other at our butcherblock bar listening to Dire Straights and The Police on vinyl. As we ate, I opened cards, each one with a sweet birthday greeting that made my heart ache missing loved ones. The last one I opened was from Michael's aunt. A photographer in her own right, her handmade cards always include one of her photos pasted on the front. The image on the card, taken from high on what appears to be a ferris wheel, moved me unexpectedly and deeply. A flood of emotion gushed out in a tearful mix of exhaustion, sorrow, regret, love and gratitude. From her perch, she had aimed her camera at a boardwalk carnival and caught a bird's-eye view of striped canopies atop carousels, white umbrellas, kiddie rides, people milling about, and a roller coaster, something which, though it's my favorite ride in the world, I haven't ridden in years. Beyond the midway stretches a vast beach peppered with hundreds of sunbathers and beyond that, at the top of the photo, the teal open ocean. The scene she had captured for me was an enormously rich and vivid world—one beyond my reach physically—expressed in a simple five-by-seven photo.

I released all the tears that were in me, so grateful to—from my relative confines as the mother of a disabled and chronically ill child—be able to experience a new place and imagine myself smelling cotton candy and sea mist, hearing the surf and the gleeful shrieks of excited children, feel myself dart and weave in the salty breeze between happy carnival goers. What a gift to see the outside world on my birthday, from up high on a green ferris wheel.

flowers from Lucretia

confronting other(s)

The children mulled around in the shade drinking cream soda and lemonade, while grownups huddled on the patio nibbling sushi and drinking wine and pale ale. We three were some of the first to arrive. I started off by greeting our hosts with some kosher tidbits while Michael held Calvin and spoke with some folks he hadn't seen in a while. I brought Michael a beer then escorted Calvin to the kids' buffet. We stood by ourselves aside the picnic table as I fed my drooling boy bits of sushi, chunks of cheese and bites of tortellini. He guzzled pink lemonade from an open cup that I held up for him. After some time, having been unable to drink a beverage while tethered to my son, I grew tired of standing. I spied a comfortable spot to rest, a few cedar benches in the back of the shallow yard. There, Calvin wanted to sit on my lap where he was content for a bit, hugging me and kissing my nose. From our perch, I watched the partiers snacking and laughing and taking sips from their drinks. Calvin and I remained by ourselves awhile longer, but no one came over to say hello.

The thought occurred to me that some folks might subconsciously think Calvin is contagious, or perhaps simply repellent, like when a certain woman—not really a friend, though no stranger to me—regularly averts her eyes to avoid us at the grocery store. After all, even I've felt disgusted by my own child at times. Then, I thought that perhaps some of the guests might've been avoiding the risk of hearing too many wearisome details about our fucked-up kid (I can tend to go on ad nauseum when asked about Calvin) prompting them to steer clear. Perhaps it's best, however, to assume that no one noticed us sitting there. Nevertheless, I rarely hesitate inserting myself into gatherings where there are more than a handful of folks I don't really know. So, with my shirt-stained child in hand, I dived into the eye of the storm, asked a dear to pour me a drink, sat Calvin next to me on a low slab of granite and chatted with several friends, craning my neck skyward to see their lovely mugs. A good time was had by all.

At home later I recounted the party and how nice it was to laugh and smile, see friends and enjoy how well Calvin faired amongst the hubbub, reminding myself how long it has been since I've worried about him having a seizure at that time of day. I still questioned the half hour or so of solitude, though thankfully I hadn't observed anyone, not even the children, gawking or casting aspersions, unlike strangers sometimes do. Everyone had been kind and inviting. I realized that the world has made some progress regarding Other since I was a child, and that I live in an pretty inclusive town.

At dusk, Michael and I sat down to eat the baby back ribs he'd been braising in onions and wine for three hours. We watched the film I Am Not Your Negro, in which James Baldwin so eloquently describes what it is to be Other in this nation, specifically to be Black. And though I myself have been drawn to Other (non-white, non-straight, non-Christian, non-American in my case) since I was a youth, and though my social circle, romantic and otherwise, has always been racially and ethnically diverse, it wasn't until after the birth of Calvin—through the lens that is him—that I began to see with greater clarity what I'd known quite well for some years, namely the shunning, the maligning, the misunderstanding, apathy and injustice that Black people experience in America.

Even in the face of mounting evidence revealing the legion of innocent Black men, women and children who have been beaten, choked, shot and killed by police, many Whites remain in denial. They stand their ground and condemn the innocent by saying that the victims should have simply not resisted, selectively forgetting the doomed who did comply. They complain that Black people are bitter and angry and should simply "get over" slavery, an admission that proves their willful ignorance of the conspicuous struggles that Blacks continue to face, all of which were born out of slavery itself. They fail to see how daily life is more of a struggle for some people—i.e. people like Calvin and People of Color—because of stereotypes, discrimination and other societal and systematic impediments. Many Whites, even those who insist they aren't racist, feel entitled to judge how an oppressed people peacefully protest their subjugation (think Colin Kaepernick's taking a knee during the National Anthem to protest police brutality and other mistreatment against Black people) in a nation where we are all ostensibly free and equal. Would those critics condemn suffragettes today?

James Baldwin's words still resonate:

But, you know, when the Israelis pick up guns, or the Poles, or the Irish, or any White man in the world says, "Give me liberty, or give me death," the entire White world applauds. When a Black man says exactly the same thing, word for word, he is judged a criminal and treated like one and everything possible is done to make an example of this bad nigger, so there won't be any more like him.

Too many Whites don't truly know their Black brethren, haven't befriended them or spent time in their homes, haven't broken bread and imbibed with them. Instead, they keep their distance, glued to their sets and their radio maniacs and talking heads, which spew ceaseless lies about an entire race of people whose enslaved ancestors literally helped build this nation, yet who bear the burden of racist policies and the rotten policing many Whites want to believe are anomalies.

James Baldwin articulated this phenomenon so effectively when speaking about the Birmingham Campaign in 1963, in which police used fire hoses and attack dogs against peaceful civil rights protesters; he might as well have been describing Ferguson, Missouri:

White people are astonished by Birmingham. Black people aren't. White people are endlessly demanding to be reassured that Birmingham is really on Mars. They don't want to believe—still, less to act—on the belief that what is happening in Birmingham is happening all over the country.

The other day I read a recent account of an eight-year-old boy of color from New Hampshire who had been hung from a tree with a tire-swing rope by some White teens spouting racial slurs. He suffered rope burns so bad his little neck bled. I hear stories every day of Black men and women, some of them dear friends of mine, being harassed, mocked, threatened, beaten by white civilians. I see acquaintances on Facebook sharing stupid memes about the righteous removal of offensive Confederate monuments. Their ignorance is clear to me. I mean, you don't see swastikas and monuments of Hitler and his generals populating Germany.

I went back to thinking about the nice party, about my peculiar boy and how, in retrospect, no one really seemed bothered by his presence. Then I considered the larger marginalization of disabled people in this nation and the advances they've made, and I wish the same for Black Americans who have suffered deeply and who continue to pay dearly, some with their lives, for nothing more than the pigment in their skin. Another quote from James Baldwin came to mind:

Not everything that is faced can be changed, but nothing can be changed until it is faced.

I recalled a moment years ago, back when Calvin was wearing his safety harness due to his poor balance, when a classmate of his asked me if he was a dog. I was determined not to let her get off easy.

"No, I said, "Are you a pig?"

She visibly shuddered at the notion, frowned and hurried away.

The only thing the girl chose to see was that Calvin was somehow different and, for whatever reason, rather than be kind and open to understanding, she decided to be mean. Her reckless judgement stemmed directly from her willful ignorance and indifference toward Other exposing her own failures and inadequacies.

We all choose who and how we want to be.

Photo by Michael Kolster