waiting for the day

For nearly fifteen years I've been dreaming of and waiting for the day when my son could amble around the yard by himself. Since Calvin was about three, he has appeared to be on the verge of walking without me holding his hand, harness, elbow or shirt, or slinging an arm around his neck or waist.

Sadly, just before Calvin took his first steps in earnest when he was two and a half, he was on a pretty high dose of the powerful antiepileptic, Keppra. Judging by the way he walked as if he were drunk and/or aboard a rocking ship, it must have made him dizzy. Poor kid. When I think about the legion of awful drug side effects my tiny boy has endured for so many years, I feel sick.

With time, Calvin's balance has been getting better, but most especially during the pandemic. My guess is the improvement is due to the gradual reduction of his one remaining pharmaceutical, Keppra. Though we ditched it before he turned three, we went back to it when he was six or seven. We've allowed him to gradually outgrow his "therapeutic" dose, and more recently we began reducing it because it doesn't appear to be doing jack shit. His dose (mgs/kg) is now half of what it was years ago. It might be my imagination, but he seems slightly calmer lately. Moreover, he has not had any seizures in twelve days, which is equal to his longest stint since March (though I think he's on his way to having one tonight.)

Getting back to his walking, this is the first summer that I've been able to let him get a distance from me without worrying (too much) that he will fall and hurt himself. I still stay nearby to spot him, especially when he walks on the stone path or in the narrow spaces between the rock borders of the perennial gardens, but the kid is doing decently well balance-wise. And though his gait is wonky as ever, I almost never see him teeter backwards anymore. Unfortunately, I still can't leave him on his own because he's prone to sit on the ground staring at the sun and/or sweeping blades of grass, twigs or bark into his mouth. But I can relax from my usual hypervigilant state for fleeting moments just to pull a few weeds or deadhead some flowers, and for that I am most grateful.

snowy milestone

For the very first time in his life Calvin walked a loop in our backyard while it was covered in snow. Managing to keep him upright as he careened along a narrow path of icy footprints was difficult. A few times we nearly toppled over each other. At one point, I looked down at his face and saw him smile. As we plodded clumsily along, he used his free hand to reach out and pat his favorite shrubs. He seemed happy to be outside in the yard again after so many months pent up indoors.

You may wonder why, at fifteen, he's never done so before. It's partly because he cannot walk in snow boots or rain boots; they are too bulky and roomy for him to manage. Also, his current ankle boots, though waterproof, are not high enough to walk in deep snow. And so yesterday, the snow having begun to melt in the sun and mild temperatures, was a perfect time to give it a go.

I wish I had a photo of Calvin traipsing along in the expanse of white, wish I had a photo of his smile. But I didn't have my camera or phone on me, and so I'll just have to make a note of our special, snowy excursion in my mind.

free and clear

Today, Michael and I were able to make a rare day escape while Calvin stayed home with his kick-ass-nurse, Rita. Though we were afforded just a few hours, it was one of only a small handful of daytime getaways we've had as a couple—free and clear of Calvin—in at least a year, probably two.

We took Nellie and headed to Popham Beach on a day that was warm for January in Maine, the mercury hitting the mid forties. Though the sun was shrouded, the beach is always beautiful, and this time the tide was farther out than we could remember having seen it.

It felt good to move my body, which I don't do enough of these days, and even better to be able to walk without fearing a bad fall on icy driveways and sidewalks or through crusty snow. It was also liberating to have part of a day to ourselves without the constraints of Calvin due to seizures or bad behaviors at home or on the road; he'd had a grand mal Saturday morning, but woke up without any today and in a good mood.

But I feel and fear another seizure coming, perhaps sometime tonight or tomorrow morning. It's been a sucky month seizure wise, one of his worst on record, albeit in the throws of puberty and on the smallest amount of pharmaceuticals since he was two or three years old. But I keep reminding myself that my days are no longer full of angst, the constant tension of expecting a seizure to strike at any moment, especially during Calvin's bath time; since reaching his current dose of THCA cannabis oil, his daytime grand mal seizures have virtually disappeared.

In less than a month, and after nearly four years of a wean, Calvin will be free and clear from his addictive benzodiazepine, and then, with luck, he will begin to heal and maybe even go on getaways with us to the beach again. It has been years.

maine street

By nearly every measure, Saturday was stellar. Calvin didn't suffer any seizures. He didn't wet his bed, soil his pants or jumper. He didn't leak or spray prune juice everywhere. He didn't try to stare at the sun very much. He ate well, smiled some, giggled a bunch, and was really very cooperative.

Though the sun was out, the mercury never climbed above freezing, but the unseasonably cold single digits we've had recently and the lack of bitter winds made it feel balmy, so we bundled up a little and drove downtown. By downtown, I mean our city's short main drag which, I guess, is aptly named Maine Street, with its small shops, salons and restaurants.

First, we visited Wilbur's chocolate shop where I bought six cordial cherries to give my neighbor and friend Woody for Christmas, about the extent of my holiday shopping. As we waited in line, I gave Calvin a couple of chocolate covered cranberries that he chewed well and seemed to relish. Next, we returned a DVD to our favorite movie rental store, Bart & Greg's DVD Explosion which, most regrettably, will be closing later this month. I'm not sure what we are going to do without the establishment that has served us so very well these past fifteen-plus years, with its 36,000-film inventory and its lovely owners and employees who nearly bat a thousand recommending films we wholeheartedly appreciate and couldn't get elsewhere—obscure films, independent ones, strange flicks and documentaries, foreign films and the occasional blockbuster. As the only folks I know without smart phones, Michael and I have also never streamed a film from Netflix, nor do we intend to. But how we are going to satisfy our desire for little-known films that expand our minds, sate our appetite for the peculiar, and challenge our notions of the world, I don't know. Thank you Bart and Co., for having met and exceeded that need for so long.

Next, I brought Calvin upstairs to Wild Oats Bakery and Cafe where the line was nearly trailing out the door with folks buying lunch and/or any number of other delectables including some of the most amazing cakes and pies I've tasted. It would have been almost impossible for us to wait in a line that long without Calvin sliming all of the glass cases in drool. So, instead, we stood and sampled some delicious spreads on tiny squares cut from freshly made loaves—salmon spread, herb spread, three veggie spreads plus a layered tomato-pesto one. Calvin gobbled them all up, then put a finger to his lips asking for more.

Our last stop was on the other side of the four-lane road shown below. Calvin has a habit of wanting to drop down in the middle of streets, but we managed to get across with no problem. Once inside a favorite Maine Street shop called Local Market, we made our way to the deli counter where I ordered a pound of Calvin's favorite wild rice and edamame salad with grated carrots, shaved almonds and cranberries. The shop is always tastefully assembled with scads of kitchen sundries, jars of chocolates, bottles of wine, racks of fancy snacks and crackers, country farm tables stacked with glasses, mugs, cups, plates and bowls, table linens and baskets brimming with fresh organic vegetables all grown local. Even so, I navigated my precarious boy through the narrow aisles without disturbing or destroying the attractive displays or turning over any tables. Thank you Sylvia and Sharon for always being so welcoming to me and my unwieldy son.

To top off the day, Mary, Calvin's former ed tech, came by to watch Calvin for the rest of the evening. I was able to take Nellie for a nice long walk through the woods, have a drink with Michael at our favorite watering hole, then join our friends for cocktails, appetizers, a scrumptious and well-worth-waiting-for leg of lamb dinner, and a much-needed dose of terribly bawdy humor at their house just up the road, something we don't get out and do as often as we'd like.

Today we've got just one or two errands on the docket, which is good since the temperature at noon still hasn't reached twenty. We've got a holiday party to attend this evening at our friends' restaurant, and though Calvin already seems primed for another seizure (with a very rashy butt, face and chin for starters) and though the party is not at one of the familiar places on Maine Street, he seems good enough to go.

Downtown Brunswick, Maine, Photo by Unknown

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

broken feet and seizures

Four weeks ago Calvin fell out of his bed and broke his right foot. He got the cast off last Tuesday and has been limping ever since. The doctor said this is to be expected, but it looks slightly swollen still, and he doesn't walk on it for any distance before wanting to be picked up. My fear is that it hasn't healed, so hopefully we can see the doctor again this week.

At the grocery store yesterday, Calvin asked to be picked up before I was finished getting all that I needed to get. I scooped him up between his legs in a sideways carry and pushed the cart with my left hand which also cradled his upper back. When we got to the checkout counter, I set him down gently and asked him to wait while I paid. He reached up to me and fussed, whined and hugged my neck, put his fingers in my mouth, grabbed my nose, and ravaged my hair, which had been tied loosely in a bun. I leaned down and gave him a big hug.

I mentioned to the clerk and the man standing behind me that my son had just gotten his cast off after breaking his foot and, to add insult to injury, that he was likely going to have a seizure in the morning.

“He’s a complex kid,” I said, and the man behind me, who had a twinkle in his eye, smiled.

I explained myself not for my benefit, but for theirs. I figure too many folks make snap judgements when they see a fussy child like mine. I figure it’s good if I can help raise awareness and encourage folks not to jump to conclusions or to judge.

At four this morning Calvin had the seizure I'd expected. When we heard Calvin screech, Michael and I scrambled to his room, untied his safety netting and lowered the side panel. I reached in to protect Calvin's feet, particularly the one he’d broken, from slamming against the side of the bed. Once I’d pushed them to safety, I grabbed the vial of frankincense and rubbed a bit on each toe and arch, at the back of his neck and at his temple, then held the bottle under his nose for a bit. The seizure stopped shortly thereafter, and he suffered zero aftershocks while I laid with him in bed.

Today, Calvin doesn't want to put weight on his foot. I wonder if he might have kicked the side of the bed when he first began to seize. I wonder if I made him walk too much or too far yesterday. I lament not having secured the safety netting the day he fell out of bed. I wonder if he'll every walk "well" again.

So, we'll spend the day indoors again where I'll watch out for partial seizures in the grand mal's wake. I'll keep him from staring at the sun and poking his eye. I'll give him a bath and offer him a nap, change his diapers, feed him his food, clean up his mess, give him his meds, and I'll carry him up and down the stairs to keep him from standing too much on his poor little foot.

Photo by Michael Kolster

these are the days

It’s more of a gasp than a cry—the sound my son Calvin makes at the start of a seizure, which usually rips me out of sleep to find him shuddering in his sheets, his eyes peeled open and yet blind to the world.

After Michael and I unlatch and lower Calvin’s safety bed panel, I grab the syringe of THC cannabis rescue med then, gently holding his jaw, I squirt a tiny bit into his mouth and rub it into his gums. While he spasms, as best I can I scoot him back from the wooden lip of his bed so that he doesn’t bust a toe or jam a finger, his limbs jerking in quick, rhythmic waves. Within a minute or so, the spasms stop and my boy begins to whimper and shiver like a cold, wet pup. I have no idea if he remembers any of it. I hope not. I also hope that the cannabis oil will continue to thwart the clusters of seizures.

In the days between these seizures, I’m apt to partially forget about the actual despair they spark; the complex, gloomy prospect that he’ll—we’ll—likely suffer a lifetime of them is soon displaced by the simple fear and dread of the next one rolling our way.

In the time between these seizures, Calvin has some good days and some not so good days, but as one cute brown-skinned boy, who four years ago was in Calvin’s first grade class, said to me recently, “It looks like Calvin is growing up so fast lately.”

I took his sweet and insightful comment to mean that he’s noticed Calvin progress, stand taller and walk better, and the boy is right and kind to have mentioned it to me.

These are the days when I forget my despair.

Others are noticing Calvin’s gains, too: his bus driver, as she sees him step up the steep stairs all by himself; the staff at the grocer who see him amble down the aisles, at times without holding our hands; our neighbors, who watch Calvin teeter, sometimes happily, down the sidewalk with little help; Woody, who saw a smiling Calvin seesaw in his rocking chair better than either of us have ever seen him do.

Yesterday, as Michael and I walked Calvin across campus to downtown for a second day in a row, a little girl with light olive skin and sprigs of golden curls emerged from her mother’s parked car and crossed the street to join us.

“Hi Calvin!” she said, waving and smiling as she approached.

She reminded me that she is in Mr. Shea’s class, Calvin’s mainstream fifth grade class, which I visited last week. I thanked her for her kindness and for going out of her way to come and say hello. As she got back into her mother’s car I waved, then held my hand over my heart and smiled at her mother as they drove off.

These are the days when I forget my despair.

A reader wrote to me this morning upon having seen yesterday’s post, sunday stroll:

I have a question. This picture made me smile. He looks like a happy boy with an obviously loving dad. When I see differently-abled kids and their parents out, I frequently have the same reaction—a smile at the child and then the parents. But then I worry that this type of reaction comes off as condescending or patronizing. After all, did I smile at ALL the parents and children I just passed? I want to be respectful, but I also want to share my awe and appreciation for the hard job they've been given, and well, I like to smile at kids. I don't know. Do you have any thoughts? I hope this question itself isn't intrusive. —Abby

I answered:

dear abby, wow! i am so grateful for your thoughtful question, and i know just what you mean. i've had the same thoughts about smiling at other disabled people. my husband and i sop up smiles from others. never does a smile for calvin and for us go by unnoticed or unappreciated. we always say, "did you see that person smile at us?" it is a wonderful feeling. it is a feeling of validation, that we have a place in a world which often marginalizes us and turns away. thank you. thank you. thank you.

These are the days when I forget my despair.

Photo by Charlie Muller

sunday stroll

Today, the first day it has felt like autumn to me, we took a Sunday stroll a mile or so across campus to downtown. Calvin walked much of it on his own as he did yesterday, which is a major feat for him. It seems the further we get away from a benzo decrease the better he does; it has been almost six weeks since the last one, having paused the wean briefly to introduce vitamin D and zinc supplements intended to help his withdrawal and possibly even his seizure control. I'll let you know how it goes.

As for Calvin's behavior during this short respite from the benzo wean, it's pretty damn good. He's sleeping like a champ and not staying up until midnight totally wired. He's walking well and is slightly less stubborn. He's waking a bit happier, playing with his toys longer and drooling and finger-snapping less. I just hope we can expect things to continue getting better after we get him off of the clobazam completely, which at this rate might take another year to eliminate the last six milligrams he takes every day. And when this feels like forever, which is often, I try to remind myself that we are going in the right direction and, with any luck, it will all be downhill from here, and perhaps we'll have a lot more successful Sunday strolls in our future.

blue ribbon boy

My core competitive nature makes me very proud of Calvin for winning a first place ribbon (for the second year in a row, mind you) in the assisted-walk event at our regional Special Olympics. By the looks on their faces—watch lane 5—I think he and Mary had fun.

easier

Time again to slip a steely needle through a vein. Monday it was Rudy’s. This time, Calvin’s. It’s never easy. They’ll poke and prod, fish around until they find it. He’ll cry and squirm. If we’re lucky they'll stick him only once and the blood will flow like a spring river does. I’ll see results within a week, perhaps explaining why he’s been so insanely crazy, so manic, so irritable, why he’s been sleeping so poorly and waking up at four in the morning and not going back to sleep, why he’s biting and pulling hair and dragging his teeth across my face again giving me welts. For a while there, he was doing so well, but for the seizures.

I traipse around the yard behind him, his tether in my grip. He’s walking so well—for him—that I want to let go. Even so, his erratic balance reminds me of the piles of pills he’s eaten in his short life, a long list of bitter, never-ending, mind-numbing, debilitating drugs racking his little body and drowning his brain.

I wonder what it would be like to have a boy who had no seizures, who took no drugs, who felt good inside his body and inside his head. What kind of person would I be if seizures didn't loom around every corner like a noxious cloud, if the pressure were lifted, if the air were clear and light? What would it feel like if I had a kid who didn’t flail and grind his teeth, who could sit still and feed himself, who could run and play and fall without hurting himself, who could eat what he wanted to and ask for it, who could walk down the street with me without balking and twisting, who didn’t writhe and cough and scream every time that I change his diaper. I wouldn’t even mind a kid who couldn’t talk and whose diaper I had to change if things were just a little easier.

I wonder what it would be like to not have to worry constantly, my mind getting snarled in knots. What would it feel like to be free, to be able to let go of my son—literally? How would it feel to fall asleep without the hissing reminder of the baby monitor, to sleep uninterrupted till dawn for two or more nights in a row, to sleep in past six, to not feel weary so much of the time, to not have to shield my face from a thrashing kid, to float around the house with my back to my boy as he plays quietly in the room next door, outside in the yard, at a friends house?

What kind of person would I be if everything were just a little bit easier?

almost free

Today, Calvin did something that he’s never done before: he walked the equivalent of about two blocks in our neighborhood, exhibiting only the very slightest stubbornness as we began. In his new puffy winter jacket, which nearly matched some of the leaves still dangling from the trees, we set off down the sidewalk, his hand in mine. The late morning sun beat down pleasantly upon us, its angle not enough of a distraction to impede Calvin’s progress. At Woody’s we stopped and I helped Calvin ring his bell. I wonder if I can take Calvin trick-or-treating this year? I thought, as we waited for Woody to appear. But Woody wasn’t home, so I decided to see if Calvin would walk a little further.

Calvin pigeon-toeing, we walked past Mike’s house to the corner, then crossed with a group of college students and their parents heading toward a weekend event at the fields. Once on the other side we turned to head back, stomping on acorns and drifts of pine needles blanketing the asphalt path. “You’re doing so great!” I exclaimed, as we trudged slowly past Jill’s wilting phlox and tangled tomatoes, then by the Ferdinand’s hydrangea with its sagging blush puffs just low enough for Calvin to bop with his free hand. From there it seemed Calvin recognized our house, so we crossed back over and he let go of my hand the rest of the way to the car as I held on tightly to his harness. “Mama’s so proud of you,” I told him, giving him hugs and kisses next to a glad smile.

For a moment, walking hand-in-hand down the street with a willing child, I felt almost normal, felt almost free.

time after time

My kind friend Tim sent me this version of a Cyndi Lauper song and said:

had me thinking of you and Calvin. Keep up the fine work.

As I listened to the beautiful words that, indeed, made me think of being with Calvin, I couldn't stop from crying.

the beach

warm august wind,
skies crystal blue and clear,
endless.
crisp white chalk marks dissolving
behind glinting chrome wings.

sea spray dewing thin wisps of hair
at my forehead.
moist sand between our toes,
rolled up denim cuffs chafing salty calves,
leaning into the oncoming breeze.

burnt sienna kelp heads glistening,
granite sand and shell
encrusted tails,
ruffled, tangled and entwined,
sweeping and drifting in the surf.

tiny polished glass shards,
seafoam, emerald, umber and milky,
sapphire too,
gathered in your strong hands,
tumbling in our gauzy cotton pockets

smooth twisting gnarled branches,
ashen grey and blonde,
sensually arched
swollen saltwater planks,
massive fallen timbers stranded.

brilliant cresting waves,
radiant heat massaging our backs,
shadows cast seaward,
strolling in each others arms,
sandals dangling from our fingers.

photo by Michael Kolster

progress by shades

Though my son Calvin's seizures and the three powerful antiepileptic drugs he is taking seriously impede his development, he is making progress.

Today, Calvin traipsed down the sidewalk in front of our house to Woody's place three doors down, which is the farthest he's ever gone, and even then he's only done that a dozen or so times in his life. He's a homebody and a stubborn little bugger, but it seems that since we've reduced one of his seizure drugs slightly he's a bit more willing to step out of his comfort zone and amble down the block. This time I convinced him to walk past Woody's house then on to Mike's place and up the front steps to buzz the ringer. Mike, who is in his early nineties and was widowed a couple of weeks ago, wasn't home to receive us. If he were it probably would have been the first time he'd have seen Calvin walking.

On our way back home we were greeted partway by a gimpy Rudy the dog who had, for the most part, stayed in the yard awaiting our return. And to think Calvin did all of this walking a few hours after having given five full vials of blood for testing, during which, by the way, he was a total champ.

And when I tell Calvin, upon reaching the goals I set out for him, that mama is so proud of him, a big smile spreads across his face. Perhaps he, too, might know he's making progress, albeit by shades.

at the fair

Tattooed women in cut-offs and tank tops pushed fat babies in strollers. Scruffy men in t-shirts and sneakers trailed behind toting paper baskets full of fried clams and blooming onions. A young green-eyed Hispanic man working a midway ride looked on somberly then finally cracked a smile when he saw mine. He reminded me some of a boy I had a crush on in my youth.

Watching Michael weave through the crowd bridling Calvin with his harness, passing carneys with cigarettes and leathery skin between rows of shacks boasting fried dough, candied apples and hand-cut fries, made me think of carnivals of long past. I imagined the freak shows in which deformed people were paraded like animals in front of gawking crowds. I wondered if my legally-blind, disabled, non-verbal, spastic kid might’ve once drawn a crowd of voyeurs at this type of event. As it was, I felt the weight of eyes fall upon us, some curious, some compassionate, as Calvin staggered and stalled within Michael’s careful grip.

In the shade of the horse arena, while feeding Calvin a snack, we watched an eight-year-old boy steer a pony-drawn buggy to a third-place finish. The boy sat so upright and steady in his crisp blue shirt and vest under a cowboy hat almost too big for his head. I couldn’t help myself from weeping.

Every summer when we visit these agricultural fairs I wonder if, by the following summer, Calvin might be walking on his own, might be seizure free, might be off at least some of his drugs. And every summer is met with disappointment of the reality that Calvin hasn’t much changed. Other nine-year-olds there were likely milking cows or chasing pigs or brushing horses or riding bumper cars or eating cotton candy. Ours, who seemed oblivious to the animals and the rides and the games, was in a stroller filling his diaper.

The sun beat down on us as a cloud of hay dust flew into our eyes. It was as if the universe had tossed it at us in the same way it had when Calvin was born missing a significant portion of the white matter in his brain. I squinted and wiped away a sandy tear, and as we headed back to the car I looked up at the clouds in the sky, which thankfully took no notice of me, and hoped that next summer things might be better.

friday faves - first steps (video)

It occurred to me this morning (strange that I don’t remember it having occurred to me before) that Calvin, who is now nearly nine and a half, has never taken independent steps without being under the influence of powerful, sedative, anticonvulsant drugs. His epilepsy diagnosis came two months after his second birthday at which time, because of his other neurological deficits, we were still holding his hands to help him along, not unlike most parents do with their infants.

I have a few videos of some of Calvin’s first steps in the summer after his second birthday. In them, he teeters and tips as if on a ship in the high seas. He catches and rights himself, but over corrects and teeters to the opposite side. At that point in time he was taking more than his fair share of Leviteracetam (Keppra) aimed at thwarting his seizures, albeit unsuccessfully.

All anticonvulsant medications are sedatives, even the ones that provoke paradoxical hyperactivity and insomnia in some children. They all can cause dizziness and lack of coordination. Most cause lethargy, weakness, gait ataxia, visual disturbances and nausea. I could fill pages just listing the side effects from these drugs that the pharmaceutical industry makes billions selling.

It’s hard to say, but my gut tells me that Calvin would be walking independently if it were not for his years’ long, sustained and massive intake of these chemicals. He still might have trouble negotiating stairs and rough terrain due to his poor vision and muscle tone, but my best guess is that his balance would improve if he weren’t dizzy all of the time or perhaps experiencing vertigo, another side effect of some of the drugs. It makes me ill to think of the millions of the world's parents who must feed their tiny babies, toddlers and tykes unknown quantities of multiple anticonvulsant narcotics, barbiturates and benzodiazepines with few other viable choices beyond letting them seize uncontrollably until they might eventually expire.

I dream about stripping Calvin of all the drugs, detoxifying his fragile system, getting him back to the place where a little boy should be, out from under the wicked and iron thumb of pharmaceuticals. The only way possible, except for the highly unlikely chance of outgrowing his seizure disorder or the possibility that medical marijuana could stop his seizures, is to find a cure. But to do that, we need a major leg up in terms of awareness, advocacy and funding—steps that Calvin will never be able to take on his own, but that I can. You can help, too: http://www.calvinscure.com

                           

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

walking in circles

Upon seeing Michael walking in circles behind Calvin—harness in hand—in the small, beige waiting room, a man seated next to his daughter says, (referring to Calvin), "He must do twenty miles a day ... I'm breaking a sweat just watching him!"

"He gets it," I whispered to Michael who nodded in agreement. The room lit up with laughter. My nose stung and I'm sure I wasn't imagining Michael's moistening eyes.

Calvin doing his rounds at home

two steps forward (video)

The following video was captured three years ago when Calvin was six. He was on a different drug regimen than he is today, which sapped his energy. Nowadays he isn't lethargic. Instead, he's non-stop, crazy energy. And though three years have passed, his walking has improved little if any. For Calvin, it's two steps forward one step back. He continues to be thrown off balance by the dizzying effects of the three anticonvulsant drugs he has to take. I wonder if he'll ever be able to walk safely by himself. That remains doubtful, unless he grows out of the epilepsy or unless we find a cure.

milestone

Meeting milestones: what every parent hopes for as their child grows. We compare them to other children, compare them to books, charts and graphs. I suppose it all starts with the Apgar scores minutes after a child is released into this cold, harsh, bright, unforgiving world. Then the question is, how well will she nurse? When will he smile? When will she roll over? Parents will wait with bated breath and then celebrate when their child reaches for objects, sits up, creeps and crawls, eats solid foods, points, manages finger food, stands, toddles, walks and says their first words followed by full sentences tumbling out of their mouths like an avalanche.

My son Calvin has left in his wake a long path of missed milestones. At nine years of age he still functions somewhere between an infant and a toddler. He has yet to master a pincer grasp. He cannot walk unassisted because of his poor balance (in part, likely due to the antiepileptic drugs) he cannot speak or use a spoon and he still wears diapers. But despite all of these obstacles he—and I—did something together for the very first time this weekend. We went grocery shopping without a cart.

I am strong enough to lift Calvin, who is forty pounds, into the shopping cart where his narrow butt will still fit. But because he doesn’t help raise his knees and guide his feet between the bars, it’s a feat I cannot tackle alone. So for years I’ve been patiently waiting and hoping that, one day, he could go grocery shopping with me by simply holding my hand. Saturday was that day.

We parked about fifteen cars back and walked holding hands across the lot. Once through the foyer into the store, Calvin was nearly mowed down by someone rushing around a corner. He toppled, but in my tight grasp he managed to remain upright. Then he squealed and reached up, which made me think our adventure was over before we’d even begun. In the past I've feared that the large florescent lights might trigger seizure activity; he’s had seizures in the store before. So I picked him up as he squirmed and clawed, then he let loose a huge belch, after which he was totally fine. Our nice neighbor girl Brittny, who was cashiering, gave me the thumbs up to stash our groceries in the recyclable bag around my wrist since I clearly couldn’t manage a cart or basket. Hand in hand, Calvin walked with me through produce to the meat department to pick up some chicken thighs then to get cereal and oatmeal, a bag of almonds and milk. At times I had to hold him by the harness and the scruff of his collar to prevent a fall as I precariously reached for an item. I switched from hand to harness and back again while weaving between throngs of pre-storm customers and their carts. If I’d had eyes in the back of my head no doubt I’d see plenty of gawkers. But I’m way past giving a rat’s ass about what anybody thinks and, at this point, I figure we’re the normal ones and the gawkers are the weirdos. And despite the fact that I was tempted to abort the mission on several occasions because of the ridiculous logistics, I was compelled by grit and determined to succeed.

We triumphantly paid and made our way through the parking lot as I gently wrenched Calvin’s wrist steering him away from the cars he desperately wanted to bang, and redirecting him toward ours. “Where’s our car, Calivn? Do you see it? There it is!” and, once he had it spotted, he made a pigeon-toed beeline toward it. When he tagged the car I showered him with praise, “You did so good, Calvin ... Mama’s soooo proud of you!” A big, toothy smile crept across his face, the result of my applause for a milestone met and one that, in the scheme of things, was no small feat at all.

photo by Michael Kolster