freight trains

I can sense the goddamn things. I can feel them, see them, even smell them on his breath as they approach from around a bend. It’s unnerving on several levels. He gets agitated, starts ripping at my hair and bonking my head with his own noggin. He goes nuts in the bathtub, the jumper, the high chair, the changing table. He’s wired and loopy and bound to smack his head on something or take a bad fall even though we are holding his harness tightly in our grip. He doesn’t want to eat or drink or walk.

I usually spot Calvin’s seizures from a distance one to three days prior. As if sheltering from a bitter wind, my shoulders cinch up around my neck. I can feel a dull ache behind my eyes and a hard, plasicky shell around my entire body that makes it hard to move. Inside I’m molten lava and nerves, feel like I’m trembling even though I’m not. And, so far, there’s not a thing I can do to save my boy from them even though I try.

Lately we’ve tried evening out one of his seizure medicines, the one with the long half life, to see if it curbs his stubborn dinnertime seizures. We’ve increased one of his other meds hoping for the same. We’ve taken away gluten to see if it improves his behavior, his rashes, his reflux, his immune response, his seizures. Today is day twenty-four since the last one, but I think I see it coming like a freight train in the far off distance. I want to lay my body down in front of it just to save my boy. But these freight trains cannot be stopped once they are set in motion. They just sail on through like a ton of bricks and wreck whatever is in their path, smash it to smithereens, then coast off into the distance only to come through again on their next round.

But I’m hell bent on derailing this epilepsy mother-fucker (excuse my french) and I’ve been known to be a formidable opponent in the past. I don’t give up. That’s the key. Never, ever give up. In my mind I’m like the cowgirl who rides up alongside the damn speeding train, jumps it, jams something steely into it’s gears until it comes grinding to a halt, frozen in its goddamn tracks. Watch out. I’m in a mood.

photographer unknown

ridiculously lucky

The house was packed with music fans, mostly bespectacled, white-haired and balding, though plenty of younger folk, a few students and one or two restless babies. They wore felted wool coats, silk scarves, silver and gold and gemstones, fashion denim, flannel shirts, cordovan shoes and sleek waterproof jackets with reflector tape and velcro. They’d come from cozy restaurants or from home where wine and beer might've been served alongside plates of warm food and glasses of cold, clean water. Perhaps they’d had dessert, perhaps not, but there had likely been a choice. No doubt, many had smart phones in their palms, watches on their wrists and money in their wallets.

A few arrived in leather scented cars with seat warmers to take the evening’s damp chill out of close fitting slacks or lycra leggings. Others walked through the mist under dripping pines and maples just beginning to bud. They were warm and dry, their bellies full, and ready to devour some extraordinary live jazz in a clean, comfortable, climate-controlled college theater. I happened to be one of them and, seated next to me, Michael was another.

The music, a quartet of piano, upright bass, drums and banjo, moved me both literally and figuratively. I cannot do it justice with words but to say that I lost myself, even if just for a moment.

Once home and in bed, I rested my weary head in a perfect spoon of down pillows, pulled the comforter up around my shoulders and closed my eyes. I fell asleep with the sweet sound of music still humming in my head only to be woken minutes later by a semi-conscious boy banging his head against the padded safety panel of his bed. Muttering a string of grumpy obscenities I scooted into the next room, unhitched the netted canopy, laid Calvin back down and covered him so that he could get back to sleep.

My wretched complaints followed me back to bed where I half hoped Michael was awake to hear them and half hoped he wasn’t. I stewed and steamed for a bit, then looked out into the night and thought about Ronan’s mothers sleeping under a New Mexico sky without her little boy because he died a few months back. I thought of the murdered Sandy Hook children whose parents and siblings were awake with insomnia or asleep in their Connecticut homes, the empty beds of those lost in the next room. I thought of the hundreds of garment workers crushed in the Bangladeshi building collapse and the difficult lives they’d lived up until then. I thought of the tented cities of Haiti, the Syrian crisis, the masses of people living in war, depression, squalor, oppression, fear, anxiety, threat, burden, loneliness, uncertainty. I thought of those living lives with no money, no food, no heat, no shelter, no water, no healthcare, no job, no freedom, no safety, no opportunity, no future.

Then I thought about how ridiculously lucky I am—we are—and that even though I have a disabled child with medically refractory epilepsy, I have nothing really to complain about in the scheme of things. And then my anger and frustration dissolved like water droplets into the lattice of pines standing stark black against what appeared to be a non-threatening, shimmering white sky.

for my mother

It is Yours

I wish you were here with me.
I miss your smile.
But I can see it every day
when Calvin looks up at me
with that toothy, dimpled grin.
It is an angel’s smile,
and it is yours.

I wish you were here with me.

I miss your hugs.
But I can feel them every day
when Calvin holds my neck
and presses his cheeks to mine.
His face is soft and warm,
and it is yours.

I wish you were here with me.
I miss stroking your hair.
But I can touch it every day
when I hold Calvin’s head in my hand
so gently when he sleeps.

His hair is fine and smooth,

and it is yours.

My mother, Harriette, as a schoolgirl

this is water (video)

Words of wisdom to live by.

friday faves - to breathe

A short while after Calvin was diagnosed with epilepsy, when he was two, Michael and I escaped up the road a bit to have dinner with some friends. I remember the drive along a snaking route that hugged the river, worrying about Calvin who we’d rarely left behind and, though he was in the care of a nurse, I found myself tensely holding my breath.

The trip seemed forever, hard to get my mind off of our son, but we finally pulled into the gravely drive and climbed the stairs to greet our hosts. Inside, our friends cupped glasses of wine and champagne and before too long I had my own. Michael and I huddled up to the island on tall stools hovering over appetizers fit for a king. My friend Uli had fashioned hand-rolled tuna maki with sticky rice and spicy mayo wrapped up in dark wrinkled seaweed sheets. I felt the warm alcohol buzz melt over me, felt my legs get deliciously heavy and relaxed. I took a deep, refreshing breath and exhaled.

My lovely host and her husband, who we were enjoying getting to know, were pregnant with their first child. They kindly asked about Calvin so we filled them in a little about his challenges and his seizures but tried to keep the conversation short not wanting to incite fear into the minds of soon-to-be parents. She told me about a collection of essays she was reading, essays about mothering against the odds. In the book, she went on to say, was a piece by a mother of a disabled child that she thought was very good and that I might be interested in reading. Immediately, my guard went up, the brick wall of cynicism I’d formed like a shell around my delicate innards. She can’t know what I think or feel about my disabled child, I thought, she isn’t even a mother yet, much less one of a kid missing part of his brain. I feigned interest, didn’t take the book. “I’ll copy it for you and send it,” she said. “Thank you, that’s very kind,” I offered, sure that I had no interest in what the author might have to say but appreciative of my friend's kind—though, in my mind, naive—gesture.

We gathered around the dinner table for homemade pad thai with peanut sauce and huge succulent pink shrimp. Wine poured freely as the five of us laughed until our faces ached. Although we were sad to leave our happy hosts, and reluctant to step out into the frigid fall air, we were happy to be heading home to Calvin.

A few days later a large amber envelope arrived. I untaped its mouth, pried open the butterfly closure and fished out the stapled copy of the essay. “’Exceptional’ Mothering in a ‘Normal’ World” by Miriam Greenspan. I sat myself down on the couch and started reading. Throughout the essay my thoughts drifted to the friend who had sent it to me, to her angelic face and shining golden curls. Thinking about her made me cry, finally understanding her capacity for compassion, and for recognizing that the essay might resonate for me. Indeed it did.

The child in its pages was a lot like Calvin, the grief and hardship of her family a lot like ours. At once, reading the author's words, I realized I wasn't alone in the world—this bitter cold world—of seizures, ambulances, hospitals, sleepless nights, therapies, drugs, needles, x-rays, body braces, pneumonia, gawkers, fear, despair, stress, grief, loss, marginalization, disappointment, worry, uncertainty, heartache. Finally, I felt I could softly lay down my head—as if on my friend's shoulder—and finally begin to breathe.

Originally published 09.23.11.

detail, photo by Michael Kolster

because

This morning, not unlike many mornings, I found myself wanting to run away, this time to the South Seas with my friend, Eee (Elizabeth.) It’s because I've got an impossible (sometimes) kid, and because I can't run away with Michael because of Calvin, and because Eee mentioned it in her blog post from yesterday and because the idea sounded divine. I figured I'd just hitch a ride on her dream, because I could. We'd both be running away from our frantic mornings which flummox, frustrate, inflame, fret, infuriate and fluster because of mindnumbingly ridiculous—and horrible—reasons.

In said South Seas we'd sip mimosas on pristine beaches. We’d drape ourselves in a pair of sinking chairs yay deep in crystal water lapping at our ankles like the soft mouths of Labradors. We'd spy half-naked bodies as far as the eye could see, like jewels, glistening with sweat and oil and sand. We'd close our eyes to cool cucumber slabs then, with ears perked, listen to the surf and the gulls and the wind and the clink of melting ice. Because we could, we'd read all of our favorite books—without falling asleep—under the dappled shade of palms. We'd talk of love and life and art and music and hurt and absurdity and loss and dreams and of what our children would be without epilepsy. We’d stroll arm in arm clad in long flowing dresses under a moonlit sky where the sand appears like snow under our feet. Because we’d be in the South Seas, we’d sleep in a bungalow with a thatched grass roof and bamboo and banana leaf walls and, just because, there’d be no bugs. We’d wake up thirsty and toast to our husbands and to our children, grasping two large, sweating Bloody Marys in our fists. We’d eat some eggy thing with avocados. And as the dream faded we’d embrace, wondering when we’ll see each other again. Perhaps in another dream, because we’ve never met and may not meet for a long time to come.

Then, back at home, the frenzied fluster would be a little easier to muster, just because we'd dreamed it away.

special olympics

At today's Midcoast Maine Special Olympics, Calvin won his heat in the 10 meter assisted walk with the help of his totally awesome one-on-one, Mary, and his very competitive mother.

photos by Ann Anderson