8.21.2014

mindfulness

Perched on the toilet seat lid, my boy propped between my knees, I hear the rattle of the shutters in his little hands, feel the smoothness of his belly in my palms. I smell his hair, the sweetness of his breath, notice the grooves in the wood floor beneath my feet, bits of grit wedged between its slats. I’m tempted to wallow in the monotony, but this time, instead, I try practicing mindfulness, which my friend Elizabeth highly endorses. Mindfulness, as I see it, is the art of living in the moment taking in all of life’s trivial details with each breath, letting them settle like dust in my mind’s eye before exhaling. Mindfulness is also something we can practice with others.

Our scene becomes its elements, we become its essence. Little fingerprints on the mirror are clouds, the black mark on the wall, a comet. I regard the bend in my son’s slender arm which he offers me, and I fit my mouth on it, delicately, like sucking on a peach. He giggles. Nellie pads into the room, her blonde coat like a palomino, its darker parts the color of Puerto Rican sand or of a penny. Nellie’s brown eyes are the same as my mother’s, and I close mine trying to conjure her voice.

I melt back into the moment, notice the hydrangea on the other side of the drool-smeared window. Its blossoms are beginning to open, turning from faint green to ivory, bowing their popcorn ball heads under the weight of a recent rain. Spiders and their beaded webs inhabit the spaces between shrubs. Woody stepped on one yesterday. “Spiders are good luck,” Michael had said as Woody's loafer twisted into the bug, and I’d thought about the daddy long legs my friends and I had pulled apart limb by limb when I was a child.

While struggling with Calvin on our way to visit Woody, my monotony turns to self-pity. I want to cry over my sorry circumstances, about the fact that my son engages in the same activities that he did when he was two, that he can't talk and can't walk without risk of falling, that he remains in diapers though he is ten years old. Life paces along slowly. Little changes. Little improves. “It gets better,” one woman said to me the other day. I told her I wasn’t so sure. Another man, a stranger in my home there to check the furnace, asked about Calvin and when I explained he said, “God doesn’t give you more than you can handle.” I stridently disagreed, citing those lost to suicide. Shamefully, he insisted, saying, "That's their choice." I told him that, if there is a God, a Force, a Spirit, "He, She, It" doesn't dole out misery and suffering, giving more to some than to others, "Like Calvin," I said, "I don't believe that for a second." Forgetting to be mindful, he continued to shove his belief system down my throat before motioning to Calvin and saying what I already know, “He’s a good boy.” I could hardly wait for the guy to get the hell out of my house.

The UPS man arrives just as I stroll with Calvin up the block and into our driveway. Calvin is walking like a drunken sailor, so I’ve got hold of his right hand, and with my other I’ve got his harness. “You want this or shall I walk it up?” says the man in brown, who is offering me a very large, awkwardly shaped package. “Please set it on the deck, I’ve got my hands full,” I answer as politely as possible while biting my tongue wondering if he might’ve thought I had four arms.

Clay comes to pick up the cannabis oil for testing. He greets us and swoops right in close to say hello to Calvin who seems oblivious to most things. Clay doesn't mind. I tell him that almost no one touches Calvin, while at the same time thinking of John C. and of Elmer, of Matt and of Luke who lovingly do. "It's like they're afraid," I say. Clay stays for a while and we chat. Before leaving he crouches on the floor with my boy, puts his palms on either side of Calvin’s torso in Reiki fashion. Calvin calms, tilts his head back to listen. He’s being mindful, I think. Clay’s essence is pure and kind. I believe he, too, lives in the moment. We hug and say goodbye. Nellie stands next to me on the floor and I look into her chestnut eyes. Calvin crawls under her legs and for a moment it appears as if he is shouldering her. She remains still. She’s mindful of her new brother, and he of her. I smell her apricot hair, which is soft and warm from having napped in the sun on the hardwood floor, which I notice has grooves and grit between its slats.

8.18.2014

quickening

With his arms around my neck, I feel his body tense, pulling me into a vise grip. I can hear his breathing quicken, then stop. In the pitch black of the room, I know he is having a seizure; I don’t have to shine the tiny flashlight onto his face to know that his skin has blanched, his eyes have become vacant saucers. Although I am exhausted, I'm glad that I got into bed with him an hour earlier when he was fussing.

Michael comes to Calvin’s bedside, closely followed by our dog Nellie. I tell her to sit then to stay. Michael asks me why. “I want her to know it, to smell it.”

I run downstairs and bring back the vial of cannabis oil. I draw the liquid gold into the dropper, part Calvin’s lips then squeeze a dozen or more drops inside his cheek. Some of it runs out of the corner of his mouth, so I wipe up what I can and rub the funky oil into his gums with my finger.

Once the seizure is over, I crawl back in next to my boy and adjust the comforter around us both. I hear the clock strike once. It is 4:30 a.m. I hear him suck and gulp, hear his insides gurgle and squeak, feel him shudder and twitch in the seizure’s wake. He’s curled up next to me in the fetal position like he was when I first felt his quickening. Just like he did when he was a baby and a toddler, back when he was calm enough to nap with, his warm toes push into my belly. We are connected.

In the silence, I hear cars splash past on the wet street. Nellie preens herself in the room next door. The clock ticks off the seconds. I wait to hear caws from the murder of crows outside my boy’s window, but today there are none. Lying on my side, my arm draped over Calvin's thigh, I feel my heart quickening with each breath, and I wonder if things will ever loosen up, if my nerves will unwind, if our manic child will ever mellow out, if his seizures will abate, if I'll ever get a decent night's sleep, one in which I won't have to strain to hear my boy's breath quickening before it stops.

8.13.2014

nellie

Astounding what the love and loyalty of a good dog can do to bring levity into a household with more than its share of worry, frustration, exhaustion, exasperation and sleep deprivation over a disabled, chronically ill child. Thank you so much for that, sweet Nellie. We promise to adore you forever. Rudy, we will never forget you.

8.11.2014

under the same moon

Amid single-digit temperatures, in snow and rain as well as on warm summer nights, we’ve gathered around our friends’ outdoor hearths and rugged stone rings sipping cocktails and cold beers watching flames and sparks dissolve into the night sky. Too many years after it would have been smart to do so, we finally bought our own fire pit for the backyard: an inexpensive metal bowl mounted on curved legs.

“It’s like camping,” I said to Michael with a lilt in my voice, “except it’s in our own backyard.” As we reclined in damp cedar chairs, our knees nearly singed by the heat of the flame, I noted that Calvin was safe in his bed and that if we were to go camping we’d have to worry about, and find a solution for, safe sleeping accommodations for him, which is no easy task. I mentioned how glad I was, with this fire pit in our backyard, not having had to pack and unpack—the only two things I don’t like about camping. I was mindful of our close proximity to the local fire station and hospital, which is something we must always take into account when we cabin camp (we don’t tent camp anymore) in the case Calvin might have a prolonged seizure and need emergency care.

The moon, nearly full, rose slowly behind the big spruce trees to the east of our house. Occasionally, cars crept down the street, but we sat well in back, and other than chirping crickets and popping embers, it was mostly quiet. Above us, in a chunk of open sky, a bat fluttered and swooped, at times coming frightfully close to Michael’s head. I tried to capture it with my camera, but it appeared only as a ghostly mark across a blue screen.

It was the unmistakable smell of the campfire, distinctly different from a smoky barbecue, that filled me with nostalgia for past camping trips, my first being when I was quite young. I remembered our family trips to Eastern Washington’s Dry Falls where I used to jump off of the cliffs into the cool waters of Deep Lake, remembered Hood Canal where my dad, brothers and sister dug for geoducks in the delta while my mom shucked oysters, remembered the Oregon coast and its hot white dunes. While gazing at the moon I silently reminisced about water ski trips I’d taken in my early twenties to Lake Chelan and the Columbia River and then of open-air camping on a deserted pebble beach on Paros, one of the Greek Islands. I relived my rafting trip down the Colorado, snaking through the Grand Canyon on a paddle boat, and my trips with Michael to California’s Big Basin and the Alexander Valley, to Montana’s Glacier National Park, through Yellowstone and along the Snake River in Wyoming, remembered camping on the rim of Crater Lake during a thunderstorm. I recalled our two cross-country trips, one during which we stuffed three large house plants and an orange canary into a Honda Civic, and finally, our Maine adventures to Acadia, Moosehead Lake, Brooklin, and down the rutted riverbeds of the North Woods’ Katahdin Ironworks paper company land, which lead us to a lake where the only evening light came from stars and from our single campfire, our only obvious companions squirrels and loons.

After the moon was in full view and the mosquitoes had sufficiently feasted on Michael’s bare arms, we retreated to the house and then to bed. I was happy that I’d gotten a taste of camping again, but I pined for it nonetheless, felt sorry for myself to some extent.

The next morning I woke still thinking about camping. Then, over coffee, I read a New York Times article about the Iraqi Yazidis who are stranded atop a mountain with nothing but the clothes they were wearing when they fled their homes. I read about the atrocities this minority sect of civilians are attempting to escape: torture, kidnapping, forced child marriage constituting rape, mutilation, murder. The lucky ones escaped this peril, but faced another on the slopes of an unforgiving mountainside with no water, no food, no shelter from a blazing sun. Who knows how many have died from dehydration? Who knows how many families have been fractured? Meditating on these helpless people, who live under the same moon as I, deeply humbled me, and I saw the ridiculousness of my petty complaints about not easily being able to camp. How lucky I am, I thought, to have been born into such privilege having never had to face hunger, war, genocide, oppression, poverty, having never had to leave my home, my family, having never had to seek refuge, having never had my life and the life of my family threatened. I thought about all that I take for granted—even the full moon rising in the night sky—and how silly it is to wish for more than I already have.

8.07.2014

stormy weather

Just before putting Calvin to bed last night I sat, mesmerized, on the wooden bench near an open bedroom window and watched the storm moving in. Gusts whipped the trees to and fro making them look like swells on a dark sea. The foliage and grass were cloaked in a dark grey-green out of which the orange lilies, magenta coneflower and yellow roses popped like embers from charcoal. Though it was windy, there was still a calmness in the air and I could smell—even taste—dirt as raindrops began falling from the sky.

When I went to sleep the torrent sounded like a stampede. Sheets of rain hit the windows sideways on one end of the house. The tops of my bedroom windows I left open to let in the breeze.

At 4:30 a.m., after already having woken several times throughout the night to reposition and pull the covers over my boy, I heard Calvin gasping for air. “He’s having a seizure,” I said to Michael, and I threw the covers back and ran into Calvin’s room. Calvin lay on his side in a spot of saliva, his eyes wide open, pupils dilated. His insides were groaning and creaking the way they always do after a tonic-clonic seizure. Suddenly, he startled as if he’d seen a ghost. As I leaned into his bed to comfort him, he shifted and jerked as if touching him hurt, which I’d never seen him do before.

“I’m going to give him some cannabis oil,” I told Michael, who stayed by Calvin’s side while I went to fetch the vial from the refrigerator. I rushed back upstairs and dropped ten to fifteen drops of the funky, golden oil between Calvin’s parted lips, then I rubbed some into his gums as he began to drift off to sleep. I was hoping the drops would prevent him from waking to another seizure. I slipped into bed next to him and felt his body shiver and shake for the good part of an hour, but he slept and woke without having another seizure.

We’d seen it coming, though didn’t want to believe it since it had only been nine days since his last seizure. Batch number three of my homemade cannabis oil appears to have less THCa in it, which might be why his seizures are coming more frequently than with the last, more potent batch, might be why he has been manic and whiny and shrieking and coughing and flailing more lately, might be why his sleep is disturbed. Or, all of this could be due to the recent benzodiazepine withdrawal, or both. There’s really no telling.

By late morning the air had cleared, but my view of the world was laden with seizures and drugs and sleepless nights, by an irritable child who just yesterday was pulling my hair and scratching my neck, shrieking so loudly my ears rang. I laid on my bed having not had enough coffee wishing for utter calm but knowing that the next storm is already headed this way.

8.04.2014

rough patch, edges softening

I’ve seen it all before: the restless nights, the 2:30 a.m. wakings, never going back to sleep; the apparent headaches; the erratic mood swings; the increased seizures. These are all symptoms of benzodiazepine withdrawal, the powerful psychotic class of tranquilizers such as Valium, Klonopin and Onfi, that Calvin has been taking for his epilepsy since he was only four years old.

After the most recent 10% benzo wean, we hit a rough patch. As a result, Michael and I find ourselves ridiculously sleep deprived, on edge, snapping at each other, loosing our patience, cussing and cursing our situation and the drug—even our faultless child. Thankfully, my homemade cannabis oil seems to be softening some of the withdrawal’s impact, such as the number and intensity of Calvin's withdrawal seizures. But it is still hard.

Amidst our bitter words, scowls and stinkeyes, however, emerged some bright spots, which have smoothed the edges of the rough patch. On Saturday, the three of us drove forty minutes to the Monmouth Fair, a tiny agricultural fair on an inland plateau. Calvin walked willingly hand in hand with Michael through exhibition halls, past midway rides, aside animals in pens and stands of fried dough, funnel cakes and cotton candy. Michael helped him pet a draft horse while I spoke with a kind, frizzy-haired, toothless woman about hippotherapy. Later, we sat for a spell on a grassy hillside watching the carnival-goers stroll by. I mused on the drawl of thick Maine accents tumbling from the mouths of old men in wrinkles.

Edges softening.

Thankfully, some decent shut-eye on Saturday night improved our outlook for Sunday, and the arrival of our soon-to-be-dog, Nellie, sealed the deal. She’s a big, blonde teddy bear, three years old, smart, calm, intuitive and as sweet as can be. We love her already and look forward to the levity she’ll bring to our home when she moves in with us in a fortnight.

Edges softening.

After we said so long to Nellie and her kind-hearted owner, we packed up and spent the afternoon and early evening at two parties, both of them on farms, both under big skies, both amongst people we adore. At the first, Calvin walked around some, then sat patiently in his stroller as we drank beer, noshed on juicy slices of a whole roasted pig plus racks and racks of succulent farm-fed lamb. We exceeded our quota of hugs for the day, listened to live music and blushed hatless under the filtered sun.

Edges softening.

At the second party we drank chocolate milk practically straight from the cow. The happy sound of children playing, the rustling wind and the crickets chirping in the grass gave me pause, exercising mindfulness, which I’ve heard can ease the angst and stress of parenting a child like Calvin. After an hour or so of mingling, I sat in the car with the door open giving Calvin his bedtime dose of cannabis; nearby, Michael chat with two lovely men who we hadn't seen in ages. As I gazed out over a field of garlic scapes and onions, rows of kale, lettuce greens, beets, magenta and yellow zinnias, the sun began to cast its long shadows over the idyll. In the end, our hosts sent us home with an entire pesto pizza atop a clean scrap of cardboard, and as we drove off, windows down, we honked and waved at the kids playing soccer in the field. The children waved back at us, and as they did I realized our rough spot had dissolved into the earth and sky, if only for a day, if only for a weekend.