breathe

“You ok?” my husband Michael wrote from Boston having read yesterday’s blog post. I said yes, that after a tired, frustrating, angry morning with an impossible child I enjoyed a walk through the woods and a rest in the sun with my friend, Lauren. She and I were going to top off the day with an early evening glass of wine but my gut told me I should return home to check on Calvin since we had just reduced his benzodiazepine due to increasingly manic behavior.

Lauren and I hugged goodbye and I got to making Calvin’s dinner while Barbara, his nurse, was upstairs giving him a bath. “Christy!” she shouted, and I ran upstairs knowing what to expect. She had Calvin cradled in her arms trying to get a foothold on the wet tile floor. “You got him?” I asked, his slack, slippery body making him difficult to carry. She confirmed, and we rushed him to the bed.

Calvin’s face was purplish with blotches of scarlet-flush and cyanotic blue. He felt warm. His hands were dusky right up to his wrists. For minutes he went without a breath. I kissed him on the neck, gave him raspberries there too, hoping to disrupt the frenzy of electric impulses marching through his brain. Barbara massaged his back. “Breathe, Calvin, breathe,” I pleaded, and at six minutes he whimpered and tried to suck his thumb.

Later, I called up Luke to say I wouldn’t be making it to their costume party. “You’re a good mom ... you sacrifice so much,” he said, and then, "It sucks." My voice wavering, I agreed, knowing that he felt my pain in the most intimate way possible, the way parents of kids like ours do. “I love you guys,” he ended, and I told him that I loved him too.

Next, I called Roger to say that I didn’t need him to escort me to the party in Michael’s absence because Calvin had just had a seizure. He told me that as soon as he finished feeding the kids he’d come over, make me a drink and stay for a while. He added that he and his wife can’t do much but offer thier friendship, though they do much more than that.

Today Calvin is fine, but he remains irritable and whiny. I read my friend Elizabeth’s blog saying that a strain of medical marijuana with high cannabidiol (CBD) is helping her daughter who usually suffers several seizures daily. She wrote that Sophie is smiling and making interesting sounds. I’m going to meditate on that, and on my wonderful circle of friends and, while I breathe deep and exhale, I'll think of that serene spot at the side of a still sea that I can see clearly through a stand of shivering trees.

exhausted

I'm simply exhausted beyond words today—besides my own harsh ones—so I think I'll just keep them to myself for now.

photo by Michael Kolster

friday faves - a single voice

It is a small thing—perhaps seemingly insignificant to someone who might think that a single voice doesn’t matter—the simple telling of a story. Well it does matter. A solitary voice with a compelling story or message, becomes two, becomes four, becomes eight and blossoms, exponentially, into a tapestry of resonant voices, a critical mass—a movement.

I’ve seen it happen. A mother of a child might be brought to tears by the challenges of her daughter, her son, and so she shares that story with friends. A father might read about an incidental moment in time that reminded him of his childhood, and so he passes the story on. A woman might linger on words that made her think of her father or mother—or perhaps reflect on being a parent—then goes on to share that story with siblings and friends. A parent, a student, a friend, an acquaintance, might be reminded of the simple joys and pleasures in life that they were taking for granted, and be moved to use their voice to share that message with loved ones. Or perhaps a harrowing story of a little boy suffering countless seizures makes someone realize how bad, prevalent and lethal epilepsy is, having never before been aware, and that person shares the story with everyone they know.

Your voice is a single voice, it’s true, but it can become a million strong, three million strong, three hundred million strong, if you simply share a story, pass on a message.

In the spirit of epilepsy awareness month, November, I’m asking a small favor. Next time you read a post on Calvin’s Story, if it moves you, makes you reflect or reminisce, laugh or cry, please share it with others. It’s a very worthy cause. Your voice, whether you know it or not, will be helping to find a cure for epilepsy, this devastatingly obscure disorder that afflicts and kills more people than breast cancer. Didn’t know that? There’s one good reason that Calvin and I need your voice. We need to find a cure. He can't do it by himself—needs a leg up—and you can give it to him, and to millions of others and their families.

So, take that one, simple step that you might have considered before now, which is to share Calvin's Story. Those who have done so already have sparked a critical mass for epilepsy awareness. Doing so means the world to me, because—like many of you might imagine—so does Calvin.

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

photo by Michael Kolster

halloween

Every Halloween I am reminded of past ones: of the one when Calvin endured a painful circumcision meant to alleviate frequent urinary tract infections that had spiked fevers triggering seizures; of the one where a nurse mistakenly gave Calvin the wrong dose (too much) of seizure medicine, of the one when he suffered a bad seizure, of the one when he had twenty-eight leads glued to his head for a 72-hour EEG; of the ones when he’d cry and scream so much that I’d greet trick-or-treaters with red eyes and black tears streaming down my face. I didn’t care if they saw, didn't care if it scared them, couldn't have helped it anyway.

Of late, Calvin seems to be less stubborn walking where I want him to walk. He did so well on one recent occasion that it made me think that, perhaps, I could take him trick-or-treating—for the first time—to a handful of nearby houses. I'd mentioned as much to our neighbor Woody. But then, hearing myself say it, I realized I wouldn't be doing it for Calvin, I'd be doing it for myself—a bad reason to put the poor kid through getting dressed up and out in the cold when he can't hold a bag, likely can't eat the candy and has no concept of the holiday to begin with.

This morning I'd meant to dress him in his sparkly Halloween blue jeans for school, the ones with the spiders and rhinestones, along with his jack-o-lantern t-shirt. But, in my rush to get his lunch made, his breakfast eaten and his diaper changed before loading him into the car to drive to his doctor's appointment to talk about his ongoing gastric distress, I forgot that today is Halloween.

So, I'll leave you with some photos of past Halloweens, sparing you the haunting images of the moments that were anything but a treat.

sweethearts

I’ve watched the girls across the street grow up, seen snippets of them walking to the bus on autumn mornings in their knit wool caps, leggings and rain boots. I’ve seen them lean into thick lawns pushing a stubborn mower. I've eyed them raking leaves with their mom and dad who’ve been to parties at our house.

From our downstairs bathroom window I sit on the toilet lid and watch the world go by, my arms wrapped around Calvin’s waist, his arm hooked behind my head in a kind of hug, yanking my hair—always yanking my hair. He bangs on the shutters likes he’s done since he was two, since he was old enough to stand there; my hands—then and now—grasp the harness around his chest just in case he falls.

I peer out the window and watch the seasons turn like pages in a book. In autumn, the hydrangea blushes mauve mirroring the one across the street in the girls’ front yard. Booted students trudge past in pairs on their way to their college courses. In winter, ice beads up on the hydrangea’s naked branches which shiver in the bitter wind. In late spring I watch buds emerge from joints in its thin speckled pear-skin bark, each shoot eventually forming into a branch of its own. In summer the boughs droop with popcorn-ball blossoms. Rudy lays like the Sphinx unleashed in the grass just beyond the shrub, sometimes all day long.

I’ve seen the girls go from riding trikes to bikes to aluminum scooters. Now, balancing on skate boards, their blond hair billows behind their backs like golden waterfalls in wind. The younger has eyes like Cleopatra, the eldest, that of a lake, and their long slender bodies remind me of saplings, and of their mother.

Now and then I see a boy come to visit after school and, as I clutch Calvin, my palm resting over his belly, I’m reminded of my first sweetheart. He was white-blond like so many swimmers I knew, and he played the trumpet like a pro. His parents were very cool, and they seemed to love me though I was two years older than their boy, and in high school.

As I reminisce, gazing out the window into the fading light, I feel a sting in my heart knowing Calvin will likely never be that boy to anyone. He won't send love notes on folded pieces of paper. He won't walk a sweetheart home from school. He won't ask his crush to a dance, nor will he likely dance at all. He won't kiss his darling while in the crook of a tree or in the woods or in a gentle river that bends and flows to the sea. He won't be anyone's sweetheart, not really, not as long as the seizures persist and the drugs dissolve his potential like these thoughts dissolving my heart.

zombies, nightmares, monsters and ghosts

photos by Michael Kolster and Christy Shake

telling

Sundays without Michael can be long. Yesterday could have been one of those days if not for Calvin’s willingness to walk the neighborhood sidewalks, if not for his hour-long nap and for the annual Pumpkin Sunday my friend Lauren hosted in her yard.

We arrived late, her neighbors and friends already seated around the picnic table well into carving their orange gourds. Lauren immediately offered to take Calvin off of my hands so I could partake of her homemade pumpkin soup and caramel corn. While sipping the savory bisque from a mug I got to talking with one of the other guests, a nice woman perhaps Lauren’s age. I asked her how she knew our host, where she lived, what she spent her time doing and if she had any children. She told me about her daughter and young grandchild who, she explained, since they live nearby she spends a lot of time with. “It’s so important,” she said emphatically, drawing out the "o" in "so." I silently winced, knowing I will never feel the joy of having grandchildren, then I quickly changed the subject. With one eye on Calvin and his new steward, I watched as Lauren struggled to maneuver my impatient, uncoordinated, unbalanced boy, and was pleased, though not surprised, to see her manage him with such grace.

The visit was short. I relieved Lauren and took Calvin into the kitchen to snag some soup-to-go from the pot on the stove. As we descended the back-deck stairs a white-haired gentleman held out his hand for Calvin to take, assisting my son down each step. At that moment I regretted having to leave, wished I’d had a chance to visit with the man, perhaps give him a hug in return for his kind gesture. I wondered if I'd see him again and if I'd remember his face.

After loading Calvin into the car where he sat patiently, knowing we were headed home, my friend Tahnthawan, her husband Mark and their redheaded boy Oscar, who's half Calvin's age, came to send us off. My belly pressed against Tahnthawan’s pregnant one, a January baby on the way, as we hugged goodbye. Oscar squeezed inside the open car door to talk to Calvin, and I noticed Calvin turn to regard him, something in years past he’d never have done. Oscar wasn’t shy and told Calvin about the scary house he’d been to the night before, showed him his freshly carved pumpkin then sweetly waved goodbye. It was the kind of interaction I'd seen no more than a handful of times before and, for its sheer rarity and warmth, it meant the world to me.

Before we’d left, Tahnthawan had made a snapshot with her phone. The photo is telling, and I’ll cherish it for the memory of its abundant kindness and love.

Oscar, Lauren, me and Calvin as taken by Tahnthawan