8.08.2020

my america

my america is gorgeous. it lives up to its original promises. it is inclusive and, like the universe, is ever-evolving. it refuses to fetishize the evils, abuses and inequities of white nostalgia. it's hopeful, open, well-educated and well-informed. it's full of folks who are wise, charitable, courageous, righteous, curious, ingenious and brotherly.

my america is welcoming, kind, and loving. Its people admire and embody honesty, humility and decency. as someone once said, it leads by the power of its example rather than the example of its power. in my america, leaders are driven by truth, compassion and a great desire to unite the rest of us for the common good.

in my america, everyone recognizes that success is not achieved in a vacuum, where bootstrap and rugged-individualist theories die on their mythological vines. it's where people appreciate that their triumphs are won only through the help of countless others—the banker, the paver, the farmer and harvester, the meat packer, truck driver, garbage handler, builder, baker, coffee roaster, bagel maker. in my america, the empathy gap and the chasm between the haves and have-nots narrows instead of widens, and workers are not exploited, rather, they share the fruits of their labor.

in my america, women and people of color occupy a majority of the seats in boardrooms, executive offices, faculties, courts and cabinets, embassies and halls of congress. in my america, racism, discrimination, xenophobia, misogyny, bullying, abuse, harassment, rape and femicide are things of the past. in my america, women, people of color, lgbtq people and their works are proportionately represented in monuments, art museums, literature, film, theater, music and television.

though i'm no christian, in my america, people who claim to love jesus actually embody his teachings by loving, accepting and serving their neighbor—whether gay, straight or transgender, muslim, jew, atheist, native or african american, latino, asian, citizen, immigrant or refugee—and by feeding the poor, housing the homeless, healing the sick, casting no stones.

in my america, syphoned funds from a bloated military are injected into education, healthcare for all, childcare, infrastructure and housing. in my america, no one is the victim of police violence or profiteering, there are no private prisons—perhaps no prisons at all—and capital punishment is forbidden.

in my america, our sordid history is taught in schools, not scoured and whitewashed like it has been for decades, if not centuries. it's a nation where symbols of the failed, treasonous confederacy are toppled once and for all. it's where monuments revere heroes of noble and just causes, and memorials honor victims of atrocities. in my america, we are moved to feel remorse for the crimes of our forefathers, and to atone.

in my america, those who are fleeing war-torn, starved and violent nations are welcomed here with open arms.

in my america, people see the value of—and work to protect—each other, particularly the vulnerable, including people like my son calvin, who in so many ways is one of the best americans i know.

8.07.2020

one of those days

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

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

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

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

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

8.03.2020

mixed bag

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

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

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

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

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

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

7.26.2020

emotional landscape

There are days that are so dark that I wish my son would disappear into the ether, dissolve like a lozenge on my tongue, seep into the earth like so many drops of rain. And yet, I am without a doubt a better person having carried and cared for him all these years, and for that I owe him a debt of gratitude. But sometimes I wonder how long I can keep up with the intensity of care he requires, and I can't imagine others loving him, cuddling him, and responding to him—especially as he grows—in the way he needs to be happy, healthy and to thrive.

Thursday was one of those days—hard on my body, my psyche, my spirit. I got frustrated. I lost my patience. I screamed, once, long and hard and primal. I grieved. I felt a valley of contempt for Calvin as he screeched and writhed and moaned and flailed all day long and into the night in what we finally concluded was probably a ghost of benzodiazepine withdrawal. It's days like these that sink me, if only momentarily, into oceans of blues.

Among others, Calvin is at the root of my dark feelings. Pain and anger. Loss and grief. Frustration, hurt, impatience. Resentment and contempt. Since his birth, I experience these more deeply than ever before. But I embrace and honor them—these most human emotions we are sometimes taught to betray, suppress, abandon—while trying not to wallow. Perhaps they've gained gravity from the chronic grief of losing a child who is still alive: the loss of a boy who, if things hadn't gone wrong, right now would be riding bikes and running around town with friends; the loss of a boy who right now might be writing down his thoughts, might be studying the stars, protesting injustice; the loss of a boy who, in a couple of years, would perhaps be going off to college or exploring parts of the world like his parents had done.

But I am grateful for how this grief over my child informs my world, my thoughts, feelings and notions. Maybe, like befriending and falling in love with people here and abroad— folks of different backgrounds, religions, races, abilities and nations than my own—being Calvin's mother has helped me to better imagine, understand and consider what life might be like for others who struggle with hardship.

Maybe, by being Calvin's mother—getting injured by him, seeing him repeatedly seize, hearing him screech and holler, feeling so helplessly unaware of the source of his misery, watching him barely develop, worrying about his and our future, losing sleep, even having contempt for him—has taught me how to better forgive people who hurt, offend, betray, bully, wrong and deceive. I wager everyone has shit going on in their lives that hinders their ability to cope and to at times really see themselves, their words and actions, and to appreciate that of those around them, even ones they love.

Of course, there are the sunny emotions like joy and love, which live in concert with the virtues of selflessness, empathy, compassion, patience, humility, grace, charity, gratitude, apology and forgiveness. Calvin's purity and innocence inspire me to practice these, at least when I'm not in the thralls of a pity party or having my hair torn out. If only I were as gifted as he at delivering them so unconditionally. Regrettably, I fail, perhaps particularly in the patience department, though I wager my husband would disagree.

And so, upon reflection, it seems the richest, most interesting emotional landscape may not be the most clear, placid and brilliant, but one that has depth and shadows. Maybe it's one of despair juxtaposed with hope, of contentment alongside struggle, of joy straddling sorrow, each one complimenting the other, each one begging to be explored. Maybe the most meaningful days are when a troubled, agitated, impossible boy can melt into my arms, grinning and giggling at my kisses, and wherein we both discover sublime calm, if only for a moment.

7.19.2020

my friend woody

In the ten years since his wife's death, I've been looking in on my neighbor and friend Woody an average of a couple-few times on most days. Today would have been his 88th birthday.

Woody did all the things a dear friend does. He listened to me rage about Calvin and rant about politics. He endured my endless questions about everything under the sun, including his experiences in the Korean war. He made me laugh, wiped tears from my face on several occasions, and hugged me when it counted most, which was at first seldom, then often, before it became daily. He told me about his late wife, Syd, who regrettably I knew only a little, though I remember leaving her funeral—during which friends described what a remarkable, loving, kind and generous person she was—determined to be a better person.

Once we got to know each other better, Woody and I cried together when he told me about his son, Scott, a talented artist who died in his thirties. We cried together again, at times, when I shared my struggles with Calvin—the loss, the frustration, the worry, the chronic grief of raising a child who barely develops. I never had to hide my feelings from Woody and he always validated them.

Weather and Calvin permitting, I would walk my boy down the sidewalk to visit Woody. We went so often that Calvin knew early on which driveway to turn into. He'd go up the steps of the side porch and I'd help him to ring the doorbell. Sometimes, just to razz Woody, we'd ring it several times, even when we saw him coming, rolling his eyes at my foolery. Woody always let us in, regardless of how drooly or handsy or crazy Calvin was being. I'd sit my son down in Woody's kitchen rocker, snatch a Hershey's mini out of the candy jar and feed it to Calvin. Often, I'd help myself to the various snacks— pistachios, cashews, home-roasted walnuts and hazelnuts, sesame sticks or Chex mix—that Woody kept on the shelf as if for me. We'd stay until Calvin became too antsy, which was usually only a handful of minutes.

On afternoons when Calvin was being cared for by Michael or a nurse, I'd visit Woody by myself with Smellie in tow. In the winter, we'd sit in a room just off of the kitchen, a rolling fire warming our bones. His timid cats, Trixie and Norton, both got used to us, even letting Smellie lick their ears. In the other months, Woody and I sat on his front porch watching the world go by while sipping our toddies. He preferred Canadian blended whiskey with diet ginger ale. My go-to was bourbon on the rocks. Though Woody didn't drink bourbon, he kept a bottle for me in the cupboard with a backup bottle stashed behind it. I called it his magical cabinet. Though I offered, he never let me buy my own drink.

"You're the best thing to happen to Longfellow Avenue," he'd say to me, and I'd return the compliment. Sometimes, we'd hold hands.

Like good friends do, Woody let me be myself. He accepted me, flaws and all. He got used to my frequent cussing, even swearing himself a few times, which made us both chuckle. I got used to his sometimes curmudgeonliness. Endearingly, he called me a twerp. I made fun of his Maine accent by always asking him what a "twupp" was. We laughed about forgetting things like the names of actors or crooners we heard on the radio. Despite fleeting forgetfulness, Woody was damn sharp, even as his body slowly gave up.

Regrettably, after what had been a somewhat hard winter for him, because of Covid-19 we were not able to embrace for months, our visits reduced to talking to each other on the phone from opposite sides of his first-floor windows. Interestingly, he seemed more talkative on the phone than in person, even when glass was the only thing dividing us.

In true form, and not unlike my own father, my dear friend Woody was active until his last days; despite having pancreatic cancer, he mowed the lawn and weed-whacked the week before he died. Last month, he died peacefully in his sleep in the comfort of his home having been surrounded by family in the days before. I was able to visit him, holding his hand while sitting on the edge of his bed in my N95 mask. I was able to tell him how the weather was on his front porch, what kinds of birds I had seen, how the squirrels were taking over the neighborhood and what shrubs were blooming in my garden. I was able to see him smile at me with those watery blues, saw him lovingly watch me leave the room.

"Ciao," I said to Woody one last time, his eyes closed. "I love you very much. You're the best thing to happen to Longfellow."

Alden A. Woodbury, July 19, 1932 - June 16, 2020

7.15.2020

chaos and order

Maybe the low barometric pressure caused the fit to appear. Perhaps its arrival was due to the rapid growth my son has experienced the past few months. Could it be that his new medicine is at too high or too low of a dose? Is he feeling the effects of this crazy world where chaos enables the coronavirus to rule? Are we ever going to curb these weekly seizures—these synapses firing in sick unison—which rack his body and brain? Do Americans have the wisdom, humility, selflessness, compassion and dedication it will take to defeat Covid-19?

Outside, my garden is in good order. Mulch is in its place, its weight suppressing undesired weeds, its color reflective of of the wet trunks of trees. Any errant growth is neatly trimmed, withered blossoms picked and tossed into the compost. Despite my best efforts, I can't adequately control my son's condition, but the shrubs and trees which hug our home I can, to some extent, restrain. They seem responsive to the attention I give them, do well being trained.

On backroads and along the coast, life is wilder. Thunder rolls from across the bay. Lightening strikes like white neurons through skies the shade of gunmetal gray. Rain pelts the windshield in half-dollar drops (what happened to the swarms of bugs that used to splatter the glass?) A lone Confederate flag hypes our nation's racist foundation and its bloody-awful legacy. Black Lives Matter signs, which righteously populate lawns and drives, are looted by trespassers—traitors, fools, thieves.

Back at the house my son recovers from the seizure. Overnight, the rain cleansed streets, quenched flowers, grass and leaves. Day lilies are exploding like little suns in apricots, yellows and reds. My boy is not yet back to baseline. He presses and pokes his roving eyes and frantically knits his fingers, then covers his ears as if to shield them from some unheard racket. But there's no thunder. Just the distant threat of chaos and the so-called tyranny of order.

7.10.2020

dear confederate

Dear Confederate, Neighbor,

You might wonder why I'm writing, Bear with me. I'll try my best to explain.


In the span of ten days my son Calvin has had nine seizures. He has endured thousands of these attacks since before the age of two. He's now sixteen. Constant assault comes not only from the seizures but from the drugs meant to suppress them. The root of his epilepsy, a brain anomaly, also renders him speechless. He still wears diapers, and can't walk without some assistance, especially near traffic or on rough terrain. He is legally blind, negotiating the world much like someone who can't see a few feet in front of their face. He can't really use a spoon and must have his food doled out in small pieces or he's liable to choke. He can't bathe or dress himself, or adequately express himself. He enjoys no independence. Days are endless, both of us largely confined by his condition.


I often wonder how long a brain and body can withstand such pummeling. Do the seizures torture his organs, his muscles, his joints, his bones? No doubt they make him struggle to breathe; I see it every time he seizes. How must he feel when his heart pounds so feverishly? Is he fearful when the seizures take aim? I gravely dread a future captive in this agony.


Dear Confederate,


On a recent escape, I took Calvin on our usual car ride—Pleasant Hill Road, Flying Point, Bunganuc, Woodside, Maquoit—except this time we drove the opposite way. At one point, on a hillside clearing next to a modest house, I spotted a strange and unsettling sight: a confederate flag. It was hoisted on a pole so tall as to belie any humble claim of it's intent. I wonder if you put it there to provoke.


As if doubting my eyes, I turned around in a gravel lot near the bay where at low tide folks break their backs digging for clams in the muck. Driving by for a second look, I craned my neck catching sight of your flag in my blind spot. In the absence of a mailbox, I tried to guess your address. I meant to send you a postcard or letter relating my dismay of the emblem which reveres traitors who defended a sinful and hideous institution. I want to describe its hurtful symbolism honoring those who fought to preserve the purchase, sale, exploitation and enslavement of human beings for profit.


Dear Confederate,

Do you know the enslavers' victims—innocent African men, women, and children—were kidnapped, stripped, shackled, and crammed into the bowels of ships like animals, with no room to move, little foul air, water or food to intake, steeping in each other's urine, vomit and feces for weeks? Do you understand entire families were torn apart? Infants and toddlers, tweens and teens were ripped from their mothers' embrace. Husbands and fathers, mothers, sisters and brothers were sold downriver. Children and adults were forced into grueling labor sunrise to sunset. The enslaved were terrorized, tortured, beaten, whipped, raped and lynched for the smallest infraction, if any. Do you know that these innocents endured this hell at the hands of White people for 400 years only to be set free without a penny for their labor? And it didn't end there; slavery's legacy morphed into other forms of atrocities and oppression such as massacres, lynchings, Jim Crow laws, segregation, bombings, disenfranchisement, redlining, the war on drugs, police violence, and today's mass incarceration. Did you consider that these injustices indelibly scarred, marginalized and financially crippled generations of virtuous, hard-working Americans? Are you unaware? Led astray? In denial? Fine with it?


Dear Confederate,


Again, I think about my son, Calvin, one of the sweetest beings you'd ever meet. I want to tell you, Confederate, how difficult life is for him. I want to chronicle for you the eternal beating on Calvin's brain and body, his suffering, his aches and pains, his constraints. I want to describe the relentlessness of it all, my son's regrettable inability to understand why this should be happening to him, why he is seizing and hurting and can't speak—this dutiful boy of mine, this pure and innocent soul who is deserving of none of this torture. I want you, Confederate, to understand how woeful it is to know that my son can't escape his tormenter, and that no matter what I do, I can't liberate him from his misery. I want you to imagine, know and feel my son's pain. I want you to witness our wretched situation. 


More so, Confederate, I want you to imagine yourself and your family shackled and enslaved—for that particular fate was infinitely worse than any suffering my son or I will ever have to face. I want you to understand what the rebel flag might mean to Americans who are descendants of the enslaved who live in its miserable wake, and for we who bear witness to the injustices they still face. 


Dear Confederate, let fall your flag and surrender 
for the sake of all America.


Calvin resting and eye-pressing after a spate of seizures.