2.20.2017

zephyrs

Back on my stump at the edge of what some here call the Riviera—the sunny edge of a sheltered field skirted by a white pine, hemlock, maple and oak tree wood—I close my eyes, resting my head against a trunk; Nellie leans into me dutifully. I sit here thawing out as the glacier at my feet recedes. Then comes my most favorite sound in the world: the rushing of wind through the tops of trees. Though it can sound a bit like distant breaking waves on a pebble beach or like crashing rapids in a canyon river, it has a unique quality, a building up from almost nothing, like hundreds of whispering voices. Inevitably, the sound of the breeze transports me back to my childhood and I remember that today, ninety-two years ago, my Dad came into the world.

Eyes still closed, I think of those old photos of Dad, tall and lean with a rippled gut and a balding head though barely out of his teens. I see pictures of him tan and towering over the other Naval cadets sporting a toothy smile, and I imagine him back at the Academy running his 4:28 minute mile. I see snapshots of him shepherding us kids at the beach, toting a fishing pole or a bucket of clams, see a faded one of us sunning at the base of a hot white Oregon sand dune.

In my mind I’m eight again, trudging onto a grey morning beach, wind plaiting my hair, damp sneakers chafing skinny feet. Dad is up ahead leading the way across the sandbar and, like a duckling, I following the dimples his steps have made. In one hand he carries a small shovel, in the other, a bucket. Clay-colored hip waders hang from suspenders off of his broad shoulders. A gossamer white t-shirt clings to his chest, catches a gust, then billows like a sail. As he gazes out past the breakers to the horizon, I wonder what he might be thinking.

Something stirs in the melting leaves nearby, breaks my trance, brings me back into reality where the light gleaming off of the snow is blinding. It’s hard to believe Dad has been gone these twenty-one years. I wonder what he’d make of my life, of our struggles with Calvin—of Calvin himself—of the regrettable sibling fuss over politics and money, of the pathetic state this nation finds itself in.


It's time to go home, so Nellie and I trudge across a vast whiteness marred by swaths of slushy tundra. I step into a pocket of water made by someone's boot. At home I find a squirrel trapped in our screen porch and wonder how it got there. I pick up pine boughs littering the yard from a recent storm. Over my shoulder the sun begins to set at a slightly higher angle, and I am grateful. Next to me, as a clock ticks away the seconds of life I can hear a zephyr rustle through the tops of trees and, just as suddenly, I am swept back to when I was two and Dad was forty, holding me between his knees.

2.11.2017

cosmic clusterfuck

A full moon, a penumbral eclipse and a green comet aligned in some sort of cosmic clusterfuck this morning. Calvin suffered his second grand mal in just four days at the exact moment—three o’clock—when the comet was closest to the earth on a night when the moon’s pull was at its strongest this month. I wondered how many of the sixty-five million people in the world who have epilepsy had seizures simultaneously.

This last reduction of Calvin’s benzodiazepine has seemed to prove hard on him with four out of the past five days marked by seizures of some sort. I try to remind myself that it was just last month that Calvin went twenty-seven days between grand mal seizures, hoping that kind of stretch can repeat.

As the seizure abated and Michael got in with Calvin, I crawled back into bed alone, and like the moon’s gravity, I felt the pull of my blog, and began crafting the first lines in my head. I had some idea, when I wrote the words so long in my last post, that I couldn’t easily tear myself away. Writing it gives me a great source of fulfillment. It’s an intimate and reliable friend, a way to connect with others when I’m so often alone in this house with a boy whose thoughts are silent and unknown to me.

And so here I am again, who knows for how long or until when. I guess it will depend upon what tugs at me, whether the full moon or some other cosmic gravity in the world.

Photo by Rob Pettengill

2.07.2017

thirteen

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

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

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

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

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

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

Calvin's first day, Photo by Michael Kolster

1.30.2017

torn apart

Yesterday tore me apart. Calvin suffered seizures all day long, including two grand mals and as many administrations of rectal Valium. One dose was during a deep partial seizure that lasted long enough for Calvin’s face to begin turning blue, causing me to imagine what it might be like if Calvin died right there on the spot.

His second grand mal came on while Michael and I were changing a poopy diaper. Our boy’s body stiffened, his legs becoming rigid and twisted like drift wood. When he began convulsing I was able to insert the rectal gel and the seizure stopped soon after. We lifted Calvin’s limp body—I thought again about his death—onto the couch with Michael where they slept for the good part of an hour, Calvin’s eyes, at times, half mast. At their feet, perched on the arm of the couch, I cried, weary and fearful of what so many seizures and drugs might do to my child.

Last night I slept with Calvin, woke when he did, changed a wet diaper, gave him the water which he had refused most of the day, gave him an extra Keppra at midnight and extra cannabis oil at ten and two. At times I felt feverish and dizzy, a case of mild and temporary vertigo still vexing me some nights. 

My life must be out of balance, I thought, remembering what a doctor had told me the first time I experienced vertigo after having moved from San Francisco to Maine.

As I dozed off to sleep with Calvin’s arms around my neck, I wondered how my life might be out of balance (save raising a legally blind, non-verbal, incontinent, severely disabled child with intractable epilepsy who is the source of great angst and loss of sleep). After all, I’m grateful to have an amazing husband, a cozy home, a beautiful garden, an incredible group of friends, a supportive community and a boy who is brimming with love and affection. And, except for the challenges of being a woman living in a patriarchy, as a white person I am not oppressed. Lying there, I finally realized that a good part of the reason I feel so out of balance is political in nature, fearing the people in this country will lose many of the civil rights and liberties they have worked so hard to get.

Many of you may not know that the first of Hitler's victims were the infirm and the disabled. Yep, before rounding up and exterminating the Jews, Hitler and his band of merry sadofascists came for the disabled because they were thought a stain on his notion of a perfect race. The knowledge of this history is partly why I fear and loathe the current president, one who just put a White nationalist in one of the most powerful executive branch positions in this nation and one who has just barred good people because of their religion. 

I’ve heard people insist that not all Trump supporters are racists or bigots. But, perhaps not all Hitler supporters were anti-Semites, and yet their naiveté and silence enabled an entire people's demise. I’ve heard Trump voters, in their support of a Muslim ban, claim that ours is, and must remain, a Christian nation, and yet the first invaders of this Native land were refugees fleeing religious persecution. I've heard scores of folks grouse about immigrants, and yet we are a nation of immigrants. I’ve heard Christians complain about God being missing in our public schools and government, and yet our founders felt the separation of church and state compelling. I’ve heard Christians’ contempt for diverse lifestyles, other religions and social programs to serve the needy, ones that Jesus would no doubt champion.

Perhaps in an attempt to bring balance back to a world with a fear-mongering despot at the helm, I say to those who deny his blatant bigotry, who, like him, pit one religion against another, who've succumbed to his charlatanry, that when it comes to justice—not only for my disabled son but for everyone who is marginalized, discriminated against and oppressed—I can never agree to disagree.

And so when I tuck Calvin in tonight, knowing he'll be safe and sound in this (regrettably) mostly straight White Christian hamlet, I'll hold in my heart those who have been, or will be—by a man who now has as much privilege and power and perhaps as little compassion as anyone in the world—torn apart.

1.23.2017

larger than myself

It was an agonizing decision, but after resolving not to fly to DC for the Women’s March on Saturday, I finally felt at peace. Many dear friends and some amazing strangers, through their kind messages and words of support, helped me come to my conclusion. The morning of the march, however, I wept. I felt trapped in this little town, one which I haven’t been able to escape from for over two years. I mourned the loss of the chance to be a part of something larger than myself. Michael held me, which always makes me feel better. A few hours later, we packed up and drove south to Portland.

We parked in the sun about a block from Congress Avenue near the end of the protest route. It was a mild day for January in Maine, in the low forties with no wind. Bundled up in hats, scarves and gloves, the three of us, plus Nellie, picked a spot on the curb and watched the parade of demonstrators descend from Munjoy Hill, a handful of happy cops with their blue lights flashing in the fore.

Calvin was in a fine mood, and I wondered if he enjoyed the noisy crowd with their bright posters and chants of solidarity. For an hour and a half, a steady stream of people of all ages and walks of life, led by a young woman in a wheelchair, passed us by. We'd learn later there had been as many as ten-thousand marchers in our small city. An animated man with long grey hair appointed himself to direct traffic at the crossing. We saw dozens of friends who came up to us with hugs. It seemed everyone who passed looked at us standing with our drooling disabled kid biting the scruff of his jacket and going a little berserk at times. One woman holding a sign that read “Liberty and Justice for All” glanced down at Calvin, then smiled and tipped her head to me. I choked up on the spot at her validation of us. Michael’s eyes watered in the cold.

Nothing but waves of love and inclusiveness radiated from the peaceful crowd, and in scores of cities across the nation and in cities on six continents, millions of people marched to show their support of women, the Disabled, immigrants, Muslims, Black and Brown people, LGBTQ people, the underpaid and underserved. Some of my favorite signs read:

my rights are not up for grabs
respect existence or expect resistance
feminism is the radical notion that women are equal to men
i’m not a sign guy, but geez
leave it to the beavers
1968 is Calling. Don’t Answer
I would not want to be the guy who pissed off all these women
We are the 51%
Make America think again

Thankfully, there were few signs that referenced the man-child who took office last Friday after having issued a bleak and egocentric inaugural speech to a relatively modest-sized crowd so white I did not recognize it as wholly American. Our marches, in contrast, were beautifully diverse as America and about hope, love, support and compassion for each other, action and solidarity.

On social media the past week I fielded some questions about the marches. The queries, verbatim, were:

What do all the protesters (and we all know violence will erupt), expect to happen from their actions? Are they expecting Trump to quit? Do they think we all don't know by now their views? Why the gatherings to spew hatred? Wouldn't getting involved with local government be a more efficient use of time? And what did they accomplish?

I assertively addressed the questions—some of which had made me cringe because of the way they were worded. I was called smug and condescending. I was labeled a hopeless liberal. I had attempted to honestly answer the queries while respectfully challenging their assumptions. I had hoped to offer the insight they professed to be searching. I was met by some with scorn, which only served to strengthen my resolve.

Under a filtered sun, as the last marchers approached, my family joined the crowd as some dear friends pushed our empty stroller. Calvin, Michael and I marched a couple of blocks for women's rights and the rights of the most vulnerable in our nation. We marched for Calvin, because the current administration has appointed secretaries who would put in jeopardy Calvin's special education services and healthcare. We marched in solidarity with the majority of Americans who voted for inclusion, justice and equality, for bridges to be built, not walls. I smiled the entire time, even as I wept. My heart brimmed with the knowledge that no one can quell this massive, resistant, powerful, common voice against oppression, and the amazing sense of becoming a part of something larger than myself.

Photo by Connie Chiang

1.19.2017

striking walls

Deep in my sleep in the dead of last night I watched my parents die. It was dark and cold in my dream as I left the home of a friend then strolled down the steep. Unknown others from unknown places joined me in my march. On the road below I saw a familiar car skidding down the serpentine hill toward a hairpin turn that I knew it would be unable to survive. At a swift speed the car—large and heavy metal, the kind that old folks drive—struck a vertical rock wall. Upon impact, the nose of the car crumpled, and I saw my father’s arm sandwiched behind the wheel as if it were a flag.

“That’s my mom and dad inside!” I shrieked twice into the crowd, “Someone call 9-1-1!”

Those last five words, spoken aloud, woke me from my dream, which left me nearly sweating, worrying about my sick little kid and about my indecision to attend Saturday’s DC march.

After a pee and a drink of water I managed to fall back to sleep until four when I awoke to Calvin’s grand mal. It has been twenty-seven days since his last one, and so it wasn't too terribly disheartening until the second grand mal two hours later, plus the spate of partials he’s suffered much of the day, and the rectal Valium, extra Keppra and cannabis I've put on board.

Truth be told, I’m exhausted, and at times yesterday so exasperated I wanted to strike a wall, having taken care of a writhing, vomiting boy who unwittingly punches me in the throat and eyes, and spending too much angst and energy fretting my decision about traveling to Washington. To be honest, if the trip were just slightly simpler, maybe I’d jump at the chance to join the hundreds of thousands who’ll be standing up for women’s rights, the rights of Black and Brown lives, the rights of Muslims, immigrants, refugees, the LGBTQ community, and the rights of the disabled. Last night at dinner I told Michael as much, saying that if raising Calvin weren’t so goddamn complicated and taxing—the sleep deprivation, the logistics, the worry, the medical analytics, the monotony, the physical exertion, the demand on my patience and nerves—I’d have few second thoughts about picking up and going to DC. After all, I've got my plane ticket. But I don’t think I can make it this time without spreading myself too dangerously thin and risking illness or injury.

Returning to my dream, I envisioned the car crashing into the mountainside. I thought about my parents—Dad whose been gone twenty-one years, Mom who left us a year ago last October—thought about Calvin, thought about Michael and me. Then I imagined Saturday’s glorious melting-pot of bodies and faces that I ache to immerse myself in—molasses black, mahogany brown, tawny, white, red-freckled and fair—and I was reminded of a quote by Maya Angelou I'd recently seen:

Each time a woman stands up for herself, without knowing it possibly, she stands up for all women.

Then I realize that, in my absence, there will l be legions of women—and allies—gathered in DC standing up for me. And while they're striking the walls of inequality in our nation's capital, while they are braiding an unbreakable chain of diversity, I’ll be clutching my heart and clenching my fist in solidarity.

our sick boy this morning