geek on the back roads

For the first time in what seems like weeks, I went for a run. The roads were clear of snow and ice, and Calvin was in school. It was only thirteen degrees, and I'd never jogged in such cold, but when one lives in Maine and wants to run outdoors, there isn't much of a choice. Luckily, though the air felt damp, it was mostly still. I suited up, then headed out to my beloved Pennellville and parked the car near the point at the side of the road. Right out of the gate, Smellie took off and ran amok, zigzagging from one side of the road to the other, sniffing whatever there is to smell when everything is frozen. When we passed one of two dog walkers, just to be considerate (because Smellie is the mellowist dog in the world unless you're a tennis ball, chipmunk or squirrel), I clipped her on the leash and she trotted alongside me quite well. I jogged on the smooth, flat roads at a steady pace, feeling light and lithe and kind of cool (groovy, not chilled) despite the fact I was clad in mixed layers and looked like a total geek: big, boxy, patched-up, dirty, drab, puffy jacket; dingy-white, stretched-out, high-water joggers; long, black leggings underneath; bright teal sneakers. At least the chunky wool hat Meggan knit me looked good. But I stayed warm, even my hands, which were gloved, fisted, and drawn into tattered, apish sleeves.

Nearing the halfway point, I ran into my friend Lauren walking her dog. I stopped to give her a big, long-overdue hug, making sure to exhale away from her face, because—you know—Omicron. We chatted for a bit and vowed to somehow get together soon for a homemade cocktail, then I took off again. 

Twice along the way I stopped briefly to take a couple of photos before my phone crapped out in the cold. I've not often seen the early(ish)-morning sky at Pennellville, and today—not unlike every day I visit there—the scenery didn't disappoint. On my way out, clouds spread across the sky in a way that was wonderfully moody, both in color and how they dissolved into each other as if watercolor or smoke. On my way back, I watched a sliver of lemon sunshine squeeze itself through a gap in the eastern horizon. Not surprisingly, it looked and felt sublime.

In all, I went four miles, which is no big deal, but I'm thankful I could do it at all (I hope to perhaps run this summer's Beach to Beacon 10K, if I'm lucky.) As for Smellie, well, considering she's nearly eleven, her performance was amazing. Perhaps most noteworthy is that I didn't worry or think about Calvin even once until my cell phone failed on the way back, and even then I wasn't too bothered since he had had a decent morning and is in good hands at school.

At home now, Smellie is totally conked out. I'm here writing, my feet up on the green couch, listening to music and feeling the warm afterglow of a good workout, plus a slight high some attribute to endorphins while others believe might be endocanabbinoids. It has been seven days since Calvin's last seizure, which isn't very long, but it's better than three consecutive days of the terrible cluster-you-know-whats. Michael will be home soon with groceries. I've just put a fire in the stove. A small glass of red wine is imminent, and I'm already looking forward to tomorrow morning, which is when I've planned another running date with Pennellville.

while alive

delight in the mundane. step outside—of doors, shoes, boxes, habits, expectations, comfort zones. dance like a maniac whenever compelled. sing until it hurts. scream until it swells and burns. let go more than once in awhile. marvel at the day-to-day. honor every emotion—bliss, anger, grief, sorrow. trust science and trust your gut. stand up for yourself and others. pursue truth. read books voraciously. explore new genres. try unfamiliar foods. keep your friends' secrets untold. jump pantless off low bridges into warm waters. eat cake for breakfast. hug others often as possible. damn all forms of bigotry. say i love you often. let go of petty obligations. question organized religion and its patriarchal architecture. embrace nature. befriend those who are wildly different from yourself. live simply. give to others. turn to music and film. breathe deep. love misfits and weirdos. forgive yourself and others. release regret and resentments. abandon fear and angst whenever possible. practice compassion, kindness, respect, inclusiveness, gratitude, humility. travel the world if you can, and if you do, get to know the locals, their language, their food. expect success. fail miserably—at anything. imagine. wonder. create. explore. find a perch or cave from which to ponder the world. reflect. muse. hold onto hope. get lost. take risks while taking care not to hurt others. founder, but move forward with as much grace as can be mustered. listen well and live awhile in others' shoes.

looking into a chunk of ice i found on the side of the road.

in the wake of ice storms

Last Friday's ice storm on my only child's sixteenth birthday reminded me of the day he was born. My water had broken at one o'clock in the morning. The doors to our mudroom and car were incased in ice. Michael punched them open, and we made our way along desolate streets to the emergency room of our local hospital. Shortly thereafter, we were transferred by ambulance to Maine Medical Center in Portland. After a lengthy pheresis during which my platelets were extracted to give to Calvin for his suspected brain bleeds, and during an emergency cesarean under general anesthesia, Calvin was born. Neither Michael nor I witnessed his birth because, since I was unconscious, Michael was not allowed in the operating room.

Upon his delivery, Calvin did not need the platelets, nor did he need brain surgery to install a shunt; spinal fluid was not backing up in his brain, so his enlarged lateral ventricles were stable. But he was six weeks premature and weighed less than five pounds. He was flaccid and had awful Apgar scores, had difficulty breathing and regulating his temperature, had dangerously rapid heart rate and respiration, and no suck-swallow reflex. He spent seven weeks in the hospital—half of which he boarded with me in a labor and delivery ward—before we were able to bring him home.

Every year for at least the last decade Calvin has gotten a hand-delivered, handmade birthday card from my friends' son, Felix, who was born in the room next to ours a few days before we were discharged from the hospital. Felix's card, and past ones from his sister, Zoe, who is away at college, tell me that Calvin is thought of and remembered, even when life itself seems to have neglected, sidelined and harmed him in so many ways. The gesture usually moves me to tears.

This morning, Calvin suffered one of thousands of seizures he's had since he was two years old. When he has a grand mal, I sleep next to him for at least an hour just to make sure he keeps breathing. People can die in the wake of seizures, and so I remain vigilant as possible for my son. As I rested my hand on his waist, I felt keenly aware of every moment from the past sixteen years—the pain, the sorrow, the grief, loss, despair, fear, doubt, struggle, sleep deprivation, fatigue. So, too, I felt the moments—however fleeting—of triumph, joy, hope, love, tenderness, understanding and even levity. Then I drifted off to sleep.

In the days after an ice storm, streets can be treacherously slick. Craggy slush impedes sidewalk progress. These icy-white tempests can lay waste the landscape, breaking branches and taking down power lines. But in their wake they reveal crystals which glow and glimmer like halos when the sun filters through the treetops. And sometimes, despite bad odds and weather, precious babies like Calvin make their way into the world and amaze us.

smellie

I don't often write about Smellie—aka Nellie, Smellers, Killer—beyond mentioning that I take her for long walks at the college athletic fields near our home. But I really should gas on about her more than I do. She brings us much needed joy and levity and, like Calvin, loves us unconditionally, something most of us in this world could use more.

Smellie, who doubles as a Muppet, makes us laugh. When she runs, her ears flop up and down like a bird taking flight. She resembles a lion when she stalks certain prey. She loves to be underfoot, insisting on forever positioning her head beneath our hands in order to be pet, and loiters anywhere that bits of food might drop. With her muzzle in our laps, she pokes our arms like a dolphin in attempts to be caressed, and nearly crawls out of her skin when we stop. With huge brown eyes that kind of remind me of my mother's, she gazes at me like a daughter.

Our pooch, a seventy-plus pound eight-year-old, is ridiculously soft, fluffy and adorable. She isn't much interested in other dogs and is indifferent to strangers when sniffing for scraps of food or licking up vomit left by last night's drunken students. She rolls in bird shit, eats deer scat, and pounces in the muddiest puddles. Once, she devoured a baby bird after dislodging it from its nest. Another time she caught a chipmunk, and just once, a squirrel, violently shaking them until their necks snapped, then dropping them to the ground where their lifeless bodies unfurled (sigh).

As for how Calvin and Smellie get along, well, they mostly ignore each other, neither getting from the other exactly what they want. Calvin doesn't feed Smellie save the crumbs that inevitably drop from his place at the table, and he doesn't touch her unless she is sitting next to him in the car. Smellie doesn't give him kisses or want him to pet her. She steers clear of his path rather than get trampled. Each of them would probably prefer our undivided attention as only children.

Mostly, Smellie's a wonderful companion who gets me outside for exercise come rain or come sub-freezing temps, snow and ice and wind when I'd otherwise be hunkering down indoors. When we play hide and seek, she finds me every time. She follows me everywhere I go. She's gentle, loyal, sweet, and attentive. She mostly comes when she's called, and never wanders, even when alone in our unfenced yard.

We love you, Smellie. How lucky we are to have found you when we did. Please stick around a bit longer.

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

spreading the light

There are only two ways of spreading the light—to be the candle or the mirror that reflects it.

—Edith Wharton

photo by Ann Anderson

different, not less

He can’t hold a pencil or point to an object or open a bag or roll a toy car or unwrap a present or carry a knapsack or brush his teeth or feed himself with a spoon or wipe his mouth with a napkin or push a grocery cart by himself. He can’t pour himself a drink or drink from an open cup or take a bite out of a sandwich. He can’t put on his glasses or page through a book or carry an object or set down his sippy cup or hold a cookie or pet Rudy the dog or wash his hands or use the toilet or sit safely in a chair.

And he’s nine.

He can’t blow a whistle or throw a ball or sit in a wagon or fly a kite or launch a balsa wood airplane or build a lego house or work on a puzzle or fold a paper plane or roll a pair of dice or play a toy piano or chalk up a sidewalk or collect shells on the beach or pump a swing with his legs or count the cards in a deck.

And he’s nine.

He can’t walk by himself or dance a jig or hum a tune or take a shower or sleep in an open bed or pull up his pants or tie his shoes or play a sport or swim a lap or ride a bike or jump a rope or kick a ball or run through a sprinkler or wade in the ocean or skip rocks in a lake or stick his tongue out to lick an ice cream cone or climb a tree or chew a stick of gum or pick berries by the roadside or write a story or play with any toy appropriately, beyond a baby's rattle.

And he’s nine.

He can’t tell me that his throat is sore or that his ear hurts or that he has a headache or a cramp or a growing pain or that he’s nauseous because of the medicine or that he’s too hot or too cold or sad or frustrated or dizzy or hungry or thirsty or tired or bored or scared. He can’t tell me his tooth is about to come out or that he has a splinter or that he stubbed his toe or bit his tongue or that his shoes are too tight or his diaper is too wet or that he had a bad dream or that he’s about to have a seizure.

And he’s nine.

He can’t wish on a star or blow out a candle or tell me a secret or ask his dad why the sky is blue or pick a flower or describe what he sees in the clouds or ask me why I'm sad or tell us what he wants to be when he grows up or what his favorite color is or what he did in class or who he’s smitten with at school.

And he’s nine.

But he can sign for the word hug and he can hug for hours and his smile is like a handful of diamonds and his skin is of rose petals and his giggles fill me with joy and he doesn’t have a malicious bone in his body and he is pleased by the simplest of things and he wants for almost nothing and he doesn't get mad and he endures so much pain and he doesn't know greed or envy or hate and he lives in the moment and sometimes he looks into my eyes and I know that he loves us without saying a word.

Yes, Calvin is nine. And he is different, though not less.

photo by Connie Kolster

heartache, hardship and joy

Ethan bounces a basketball in the driveway. Inside, Ben holds Abby on a couch the same color as her coat. She licks his face. As dusk begins to fade, mosquitoes hover while Maddie and Zack are out on the boat with Michael. The faint hum of the motor skips across the bay. I sit on a padded chrome chair in the middle of the dock with my sister-in-law, Betsy, who straddles a dry-docked kayak. Her husband Sean takes the other chair while Rudy noisily paces around dragging his paws across the corrugated aluminum deck. It is a perfect moment. The nip in the air and the chill of white wine in glasses as big as our smiles gives me shivers. Dinner is done and Calvin is behind doors fast asleep in the vacation rental, which sits on a bluff just feet above Quahog Bay. Gma and Gpa pull up chairs on the upper deck to spy the red light off the butt of the boat as it drifts into the dock. David and Lisa join just as an osprey flies overhead.

We had taken our young nephews out on the boat earlier, Calvin too. It was my first ride of the season and two summers since I’d last had Calvin on my lap in the boat. He squirmed and screamed with some sort of excitement, perhaps irritability, perhaps indigestion. As he did so, I held him tightly so that neither of us got hurt. Ethan took a hesitant try at steering the boat while Michael shot a few pics of us from the bow.

“This is the best family reunion ever,” Ethan had told his grandmother, and continued, “No offense, Grandma, but this is better than the one in Amelia,” and he went on to explain—with a no-offense lead-in each time—that he preferred that the reunion was an airplane ride away from home and was near Calvin’s house. No offense was taken.

“Calvin is my most favorite nine-year-old,” Ben chirped a few times, “I can’t believe he’s going to be ten next year,” and I recalled how Ben was ten the last time he visited us with his Dad, and in my mind I compared the two: the boy with Autism versus the boy with epilepsy who is missing part of his brain. His mother Lisa, my other sister-in-law, showed me the handful of pills she was about to give each of her sons and said lovingly, “See, you’re not alone.” I began to say how glad I was not to be alone, but then retracted that gladness replacing it with regret that either of us—anyone—must endure the hardship and heartache of children like ours, children that bring us so much despair yet so much joy.

photo by Michael Kolster

works of art

These are Calvin's recent works of art—which I think are beautiful—no doubt achieved with much help from his amazing one-on-one, Mary. What a joy it is to see him make a happy mess like I did as a child, though I'll always wonder if he has any appreciation for the venture or its result.

two wolves

An old Cherokee told his grandson, "My son, there is a battle between two wolves inside us all. One is Evil. It is anger, jealousy, greed, resentment, inferiority, lies, and ego. The other is Good. It is joy, peace, love, hope, humility, kindness, empathy, and truth." 

The boy thought about it, and asked, "Grandfather, which wolf wins?" The old man quietly replied, "The one you feed."

Ghost Heart by Kirby Satler

friday faves - mockingbird

This is the time of year when, again, birds start gracing our presence. I’ve spied yellow and gray goldfinches drinking from the birdbath and large black crows chipping ice out if it in the early morning or dipping crusty bread into the melted water. Within the lattice of our naked burning bush I’ve spotted a male cardinal perched like some ripe crimson apple waiting to be plucked. A black and white speckled flicker taps staccato on a scaly branch just outside the window from my desk.

Yesterday, while walking Rudy on a wooded path we found ourselves surrounded by chirping sparrows and warbling catbirds—the exotic sounds of spring in Maine. These sweet songs reminded me of a favorite movie I recently watched with my sister, To Kill a Mockingbird. The classic 1962 black-and-white film stars Gregory Peck as small town attorney Atticus Finch, and is based on the novel of the same name by Harper Lee written a few years before I was born and that I’d enjoyed reading in junior high.

Gazing down at the bark trail I regarded my untucked plaid shirt and dirty jeans. I thought how, in many ways, the film’s wiry six-year-old tomboy, Scout, reminded me of myself at that age, even sharing the same pug nose, mine turned up with a permanent crease from habitually wiping it upwards with the heal of my palm. While watching Scout scamper around in her pixie haircut, denim overalls and canvas sneakers I had quietly relived my childhood days of exploring nearby woods with my brothers, climbing into their homemade tree forts, digging up old bottles and rusty treasures and playing hide-and-seek. I remembered the time my brother Scott got shot in the leg with a BB gun at close range and how I thought the silver bead looked odd embedded in his muscular thigh like a pit in peach flesh.

Partway through the film Atticus tells Scout and Jem about owning his first gun as a boy:

I remember when my daddy gave me that gun. He told me that I should never point at anything in the house and that he'd rather I shoot at tin cans in the backyard. But he said that sooner or later he supposed the temptation to go after birds would be too much and that I could shoot all the blue jays I wanted, if I could hit 'em; but to remember it was a sin to kill a mockingbird. Why? Well, I reckon because mockingbirds don't do anything but make music for us to enjoy. Don't eat people's gardens. Don't nest in the corn cribs. They don't do one thing but just sing their hearts out for us.

Somehow that scene made me think of my son Calvin. He doesn’t—can’t—get into too much trouble. Doesn’t bother other kids or pets. Doesn’t cause mischief. He just grunts and coos and giggles (and screams at times but that's the drugs) and gives us hugs and kisses and smiles and then some more hugs. Our little Calvin ... he’s like a song.

A few years back I heard part of a story on national public radio. It was about a single mother (my friend prefers the apt term “head of household”) raising a severely disabled child with the help of government funds to aid her arduous and expensive responsibility. A caller remarked on air about how much he resented his tax dollars funding what he coined “a lost cause.” His words stung and made me think about some countries that, perhaps even today, might systematically euthanize kids like Calvin or, at least, choose to let them wither and die. What makes a life valuable? I thought. Surely the caller had never known or valued—or loved—a child like the one he’d have society abandon, a child like Calvin.

In the film a kind soul had been anonymously leaving Jem gifts and trinkets in the knotted hollow of an old tree: a tarnished pocket watch, two carved soap figurines resembling Scout and Jem, a medal. That same kind soul saved the children’s lives from a menacing stalker one dark night while the two kids walked home on a wooded path. Their hero was Boo Radley, the “simple-minded” recluse neighbor who’d been secretly watching over the motherless children all their lives, keeping them safe, keeping them in his heart, secretly bestowing precious gifts upon them. Upon discovering her humble protector shyly cowering behind a door, Scout sweetly likened silent Boo—with his rumpled clothes, pekid complexion, dark sunken eyes and tussled hair—to a mockingbird.

Calvin is our mockingbird, I thought. And I hope he keeps singing for a long, long time to come.

Originally published 04.16.12.

hot wheels

Calvin's new wheels, courtesy of the Robbie Foundation, via Eric Foushee. Now if the weather would just go above freezing and melt the snow and ice, we could get outside and give them a spin.

peas in a pod

Figuring out how I can leave Calvin and Michael behind when I fly out to visit my mom in San Diego is no easy task, and it'd be akin to masochism to take Calvin on such a long flight to a place where we wouldn't be able to use his johnny-jump-up, or have an enclosed bed or a high chair that would fit him, all of which are our saving grace. So instead, I've got to coordinate their spring breaks so that Calvin is in school while Michael is not. Then I've got to get nursing coverage to help Michael out while he works his long hours in the studio. Plus, he's got to make Calvin's meals, grocery shop, do the laundry, walk the dog, prepare Calvin's meds, change his diapers, repeatedly get up in the middle of the night to reposition and cover Calvin, and get him dressed, fed and ready for the bus, most of which cannot be done easily because of the necessity of hands-on assist to Calvin.  But I need to see Mom, and I always plan the trip thinking it might be the last time I'll set my eyes upon her, or any semblance of her.

On the phone the other day she wasn't as peppy and upbeat as usual. I wonder why one day is different than another, but then I realize that is the way of the world and why should Alzheimer's be any different. She asked me where I was and when I'd be coming to visit. I told her—again—that I lived in Maine with my husband and child and that I'd be coming to visit her in the spring. Then she piped up a bit.

"Oh, that'd be superduper!" she exclaimed, "I can hardly hope to meet you!"
"Me too, mom, we'll do a lot of fun things together. How does that sound?"
"That sounds grrreat!" she replied.
"What kind of things would you like to do when I'm there, Mom?"
"Oh, I haven't even thought about it."
"Would you like to go out to lunch?"
"You betcha!" she exclaimed (her most favorite reply) then added, "Get here quick, Hon."
"Why?" I asked, with some concern, maybe reading too much into her request.
"Because I love you," she said, and my heart skipped a beat.

And so, in the face of loosing one of Calvin's best nurses ever to a better paying job, I'll have to wrangle up another one somehow so I can leave my boys behind without risk of driving Michael into the ground, without breaking his back or his spirit or his great sense of calm caring for our crazy nine-year-old kid who can't do anything for himself. Then I'll sail away to California to help take care of my mom to some extent, to hold her hand on long walks, manage a few of her meals so she doesn't eat to fast or devour the salt and sugar packets on the table, help her in the bathroom, sleep in her bedroom a couple of nights to give my brother a break, and get up with her several times when she wakes and needs to go to the bathroom. So much like caring for Calvin, I think.

And though it likely won't happen again, I think to myself and smile, if I could just get Calvin and Mom together, I know they'd be two lovely, silly peas in a pod.

March 2012

triumphs

Recently, a thoughtful reader left a comment to my blog post, parent perspectives. It read:

These are all difficult stories. I share in them with my child. But, I was wondering do you have any story that had a turn for the better? That would be good stimulus for us all!

I mulled the words over in my mind for a long while, tried to think if I could remember any stories of triumph over epilepsy. After a while I was able to come up with a handful at best. There is the story of my friend Jim Abrahams' two year old son, Charlie, whose thousands of stubborn seizures stopped after going onto the Ketogenic Diet. He'd had to stay on the rigorous, exacting diet for about five years, if memory serves me, but he hasn't had a seizure since. Charlie is now a healthy young adult. Then there is my friend Susan Axelrod's daughter, Lauren. After eighteen years of persistent seizures, failed trials with over twenty drugs, dietary therapy and one or two brain surgeries, they finally discovered a combination of drugs that stopped her seizures. And then there is my friend Michelle's sweet boy Miles, who has Down syndrome and suffered seizures for many years. He'd tried several medications plus the Ketogenic diet and his seizures finally stopped. I am unclear if the therapies worked or if he simply outgrew the epilepsy. What is clear is that now his body and mind can be free to develop at a better pace.

In all three cases I have little doubt that the years of seizures and drugs took a major toll on the children's development. In Lauren's case she is significantly developmentally delayed and still has to take three drugs every day which, regrettably, don't come without side effects, and she may well have to take them for the rest of her life. I also have little doubt but that these children remain brilliant stars in the eyes of those who love them.

Seeing things from a different perspective, and though I would give anything—ANYTHING—for Calvin to be healthy, seizure free, drug free, able to walk and talk and run and play, I have found a rich and beautiful life nonetheless, one that my friend Elizabeth, whose daughter Sophie has acute epilepsy, reminds me is also totally strange. I have encountered feelings to a depth I had no idea was possible—joy, anger, frustration, empathy, love, grief. I have learned to honor these feelings, every one of them, as part of being human. I don't fear them, I don't try to sweep them under the rug and I definitely don't hide them. They are part of me and, to a great extent, exist in such profundity because of Calvin and who he is. And the mere fact that I can say this about myself, that I have a rich and beautiful life, is one significant triumph over epilepsy.

merry winter's morn

The restaurant was packed. We waited single file in the foyer, frigid air channeling in through an open door. Michael held Calvin captive as he fidgeted and fought while some diners cast their warm smiles upon us, others averting their gaze in a manner that appeared very deliberate and which, sadly, I’ve become accustomed to.

After ten minutes or so we were seated at the end of a large table near the windows. I helped Michael slip Calvin’s long body into an infant high chair, carefully navigating his feet through the small spaces so as not to bump and bruise his shins on the way through. Immediately, Calvin began banging his palms on the table, accosting the paper place mats and snatching the utensils and laminated menus. I rummaged through my bag searching for a distraction, perhaps his sippy cup or a crunchy snack. I unearthed his rubber giraffe first, which he mouthed and slimed then ripped from his teeth launching globules of drool into the air.

Despite all of Calvin’s racket we somehow managed to scan the menu. Michael ordered the hungry man skillet with coffee and I settled on an egg 'n' cheese sandwich, crispy hash browns and grapefruit juice. Just before our meals arrived, the server seated a group of three elderly men at the opposite end of our table. Two were white-haired, one bald, and all were missing most of their teeth. It took no time to discern that the three of them were deaf. The man seated nearest us, the bald one with big ears, took particular interest in Calvin, smiling broadly with a certain twinkle in his eye. I envisioned his cheerful, expressive face painted up like a clown, all white and black with a big red rubber nose and laugh lines at his eyes making merry for children.

I looked at the man and pointed to Calvin, then spelled out Calvin’s name using sign language, something I’d learned as a child because of my deaf uncle. The man began signing quickly, so I grabbed a pen and wrote on the back of my place mat: “I don’t know much sign language,” and I went on to write that, along with his neurological deficits, Calvin also has epilepsy. As the man read, Calvin squirmed in his chair, pitched sideways to stare at the sun, banged on the table some more and shrieked. I rolled my eyes with a half-smile and spelled out, “T-R-O-U-B-L-E.” The three of us giggled as the man’s companions looked on with kind smiles.

There was something about being at a table with our wordless, disabled eight-year-old child sitting next to a bunch of old deaf men; something akin to solidarity, a particular knowingness. Our exchange was so delightful, the man’s kindness and sense of humor so touching, that it made both Michael and I tear up. I gestured to the man that Michael was crying. In return he thumbed at Michael and pantomimed spanking a child over his knee and suckling an imaginary bottle like an infant. Smiling, I told Michael that the man thought he was a big baby. Our hearts swelled with laughter.

Having employed some spatial tactics—sliding our plates just out of reach of Calvin's flailing hands—we were able to finish our meals together, when in the past we’ve had to tag team; one of us eating while the other walks around with Calvin. We waved and signed goodbye to our new friends and snuck out the side door just in time to avoid filling the restaurant with the stench of Calvin’s poopy diaper. We walked Calvin hand in hand to the car, opened the back and proceeded to change his diaper. It must have been below freezing, steam rising off of Calvin’s wet-wiped butt to prove it. Instead of being perturbed at the task, Michael and I chuckled, a sure sign that it had been a very merry winter's morn.

Rolly's Diner, Amber Waterman/Sun Journal

on bruises and black ink

Between the hours of 6:00 and 8:00 a.m. he pulled my hair, pushed off of my throat with the heel of his hand—his upper body weight behind it—and bit my ear. None of this Calvin does with malicious intent, it’s just the way he rolls. He’ll chomp on pretty much anything if it is in front of his mouth, and I’m waiting for the day when he starts to bite himself. I’ve heard stories of neurologically compromised children who engage in self-abuse; they punch themselves in the chest or the head, bite and scratch their arms, nick their corneas, but for us—for now—the only casualties appear to be Calvin’s caregivers.

In the therapist’s chair I lamented my bumps and bruises—both to my body and to my psyche—but my thoughts kept returning to the children of Sandy Hook. We talked about the twenty joyous little lives that had been snuffed out by scores of searing bullets. I hope it had happened quickly enough so that none of them had to suffer or witness their friends’ suffering, but in my mind I couldn’t see how. In a selfish stream of consciousness I spoke of my own joy and how little of it raising Calvin brings me, of how the scales of pleasure and hardship—worry, frustration, anger—are weighted like a stone compared to a feather. I told her, though, that joy isn’t the only redeeming quality in raising Calvin, but that having him has opened up realms to me that I might otherwise never have experienced—my writing, first and foremost. “I’ve always loved words,” I told her, remembering that my favorite book as a child was a thesaurus. I went on to consider that perhaps, in the past, I didn’t think that I had anything important to say with them. So I had stuck with what I was good at, the visual arts, my drawing, photography, designing and quilting, which I loved but that had never fed my soul.

In speaking with my therapist I discovered that my writing is much more than simply cathartic. “I think I help people,” I told her. I went on to describe what a beautiful art form writing is to me, how in my mind it’s another sort of visual expression. “I think of it like sculpting,” I said, and went on to explain that I build a framework, like an architect, then edit and shape the work, carving into it, adding on bits then smoothing them as a sculptor might with clay. As I fashion the piece I paint it with descriptive images, which perhaps transport the reader into my space, my head. I hope one day my writing will take the form of a book with delicately fibrous pages, jet black ink and a hard cover.

After a day of errands and walking Rudy the Dog, seeing my therapist and, most of all, writing, I am recharged, at least enough to endure an evening of possible frustration, hair pulling, shrieking and biting, but no doubt a smattering of smiles, joyous hugs and self-discovery along the way.

back to blue hill

I had to pinch myself when I woke up in Brooklin. It’s been over six years since we last visited this sleepy retreat in what’s called Downeast Maine. All the cabins have since been winterized with woodstoves and insulation and the old inn is being painted. A steep but sturdy staircase has replaced a nearly vertical path from bluff to beach. We’d carried Calvin down that embankment when he was just two years old. Later that night he had a seizure, we called 911 and ended up in the nearby Blue Hill hospital. And though it’s one of our most favorite places in the world we haven’t been back since ... until now, our tenth anniversary weekend.

During the night hard rain had soaked the earth. I sat drinking my coffee staring out the cottage windows wishing we could take Calvin and Rudy for a walk. But the long grass was drenched and Calvin doesn’t have rain boots. He doesn’t have them because we can’t seem to manage getting them onto his floppy feet, and even then he’d have trouble walking in them, like trudging knee deep through mud. So, regrettably, we found ourselves stuck inside again with our sweet little ball and chain.

Later we went into town and spotted a local farmer’s market. “Let’s get stuff for dinner,” Michael suggested, so I clipped Rudy on the leash and we walked Calvin hand in hand across the street. There were about a dozen or so vendors selling produce and handmade wooden spoons, jewelry, organic chicken and Mexican food. As we strode between the booths I felt the weight of eyes upon us, on our impish four-eyed, swaggering, pigeon-toed son. A woman standing in line for chicken kindly remarked on Calvin’s motoring skills. “I swim with kids like—,” and she cut herself short. I looked her in the eyes knowingly and, with a knot in my throat, told her how much Calvin likes the water.

I purchased a roasting chicken then joined Michael as he followed Calvin between the parked trucks and cars banging happily on each one. A man from a nearby booth approached us with a bright yellow nylon mesh satchel he’d sewn. He lovingly offered it to Calvin. “Oh, he won’t be able to carry that,” I said, looking into moist eyes handsomely sunken into leathery wrinkles pulled taught across his cheekbones. “They’re good for putting shells into,” he added, to which I explained that Calvin would probably just want to chew it. “Please take it,” he said, “I have thousands of them.” And so I did, then Calvin grabbed it and stuffed it right into his mouth. We all chuckled.

But my throat tightened and I had to turn away, tears wetting my lashes. All this generous spirit toward our retarded kid nearly killed me and, at the very least, reduced me to a little heap of silent sobs of joy and sorrow. I had found myself amongst the kindness of strangers again, up the coast three hours from home in a place called Blue Hill, not far from another called Brooklin, and not surprisingly one of my most favorite spots in the world.

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Give to cure epilepsy: http://www.calvinsstory.com

friday faves - daddykiss

I love to see how much Calvin loves his daddy. It is as plain as day, as clear as the nose on my face, as evident as the sun coming up through the trees, as beautiful as the smile on Calvin's face when Michael rubs bristly cheeks into Calvin's soft ones. And after some snuggles and hugs and giggles and squeals Calvin gives his daddy a kiss, opens his mouth wide and rests it on Michael’s nose, his forehead, his cheek—gently—and Michael responds, “ohhhhhhhhh—daddykiss!” at which Calvin smiles again, knowingly.

In that moment, who cares if the sun never comes up. I’ve got my very own sparkling rays of light right here to warm my soul.

splendor of the normal

For as long as I can remember I’ve loved kids—kids my own age, older kids, younger kids. At eighteen, when I was still pretty much a kid myself, I coached a team full of rowdy swimmers—over a hundred of them, all of whom I adored. The youngest was only four years old and a handful of others were mere months younger than I. I relished coaching every one of them—the slackers, the mischievous, the over-achievers, the uncoordinated, the all-stars. Each had something special to offer; they all enriched my life.

This week, for three days we were graced with the presence of our new friends who were visiting from Virginia. They brought with them their sixteen-year-old son, thirteen-year-old daughter and eleven-year-old fraternal twin girls. It was a gloriously full house. A few minutes after their arrival Michael asked the children if they’d been apprised of Calvin’s health issues. Soberly, the four youngsters nodded yes. And as Calvin spun and screamed and grunted like a little monster in his Johnny-jump-up the children didn’t stare or gawk. They were kind and curious, seemingly eager to be amongst us. And I was eager to hang out in their splendor of normal (though to be honest these kids are exceptional) and to open myself up for pangs of sorrow and of joy, to allow the kids to expand and squeeze and swell and tear my heart into little pieces. That’s just the way I wanted it.

During their visit my mind took little snapshots, morsels of life’s moments with the kind of splendidly normal kids that I don’t have:

Hanna: (to her sisters) with a mouthful of lobster dripping butter down her chin asks, “How can you guys NOT love lobster ... aaaaarrrghhhh?”

Elizabeth: striking an exquisite yoga pose on a grassy hillside sloping down to a backdrop of blue pond and puffy white clouds.

Kate: embellishing (often) on her love of Klondike bars and gelato.

Robert: waxing philosophical on most any subject that might be bouncing around the dinner table.

Hanna, Kate, Elizabeth and Robert: sitting in the living room quietly reading books, and, as I walk past with babbling Calvin, Kate (laughing) says something like, “He doesn’t know a word of language.” I recoil until I realize she is referring to the character in her book, and not to Calvin.

Elizabeth: sitting on Hanna’s lap who is sitting on Kate’s lap who is sitting on the couch—a bona fide sibling sandwich.

Hanna: (to my Michael) “You guys are great parents,” to which I secretly begin to cry in the stairwell clutching Calvin.

Hanna: telling me how she wants to be a doctor or researcher, Elizabeth, a dancer-actor-model-singer-lawyer, Kate, an architect, Robert, perhaps a scientist. (I might have these mixed up, but you get the gist.)

Kate: telling us how fun we are.

Me: feeling exactly the same about them and wishing they didn’t have to leave.

Their happy, energetic engagement with us filled a huge void in my life, if only for a few days. It made me crave it for myself while at the same time it stressed the sharp and bitter contrast to the life we lead with Calvin who—totally drugged up—still has seizures, cannot talk, and cannot walk without our assistance. But while the disparity between our daily experience stings, I wouldn’t trade those precious moments with that bunch of lovely kids who brought me a glimpse—a shot—of some much needed splendor of the normal.

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Give to cure epilepsy: http://www.calvinscure.com

dear friend

now i will be strong for you. i can. you will stay in my thoughts and you will shine. i know. focus on the little things. the smell of your coffee, the feeling of the sun on your face. the wind in your hair. the taste of your first sip of wine. the warmth of your lover's hand. the feeling and sound of the ground under your feet ... tarmac ... carpet ... tile ... rubber ... linoleum ... sand .... grass. the happy din of knives and forks on a plate. the sound of bees—even the memory of them. the color of the sky at dawn. at noon. at dusk. at night. the happy wrinkles in the corners of smiling eyes. the long embrace of an old friend. the light massage of shower water on your back. the smoothness of soap. the buzz of a crowd. linger on these little things and let them move you. they can be a joy in and of themselves. let the other big stuff take a sort of back seat. and know i will be strong for you, as you have been for me. because i can.

Imagine your face here.