vicious storm

Yesterday morning I wrote in the journal “day 10.” Calvin has been doing great lately, a good string of days since his last seizure and little to no manic behavior to speak of, save some hyperactivity at meals once in a while which we chalk up to being excited about eating. But we haven’t been able to eke out much more than nine or ten days between seizures in recent months, even with several drug increases. As a result his balance tends to be precarious and I am convinced it is due to the medication.

All day long Calvin refused to walk his usual paths around the perimeter of the house. Instead, he’d collapse, laughing hysterically at our coaxing, then just plop himself on the ground and sit there. So, Michael and I buckled him into the stroller, put Rudy on the leash and took a walk across the college campus to get some ice cream.

First-year students are beginning to arrive for orientation and I watched a handsome young man say goodbye to his sharp dressed parents in front of a stately old brick dormitory. I’ll never do that with Calvin, I thought, and felt the twinge of loss that I probably feel daily for one reason or another.

A few minutes later, ice creams in hand, we parked ourselves on a bench aside the shack as the Blue Angels streaked across the white sky, their deafening thunder enough to make me want to cover my ears. Rudy, unfazed by the racket, sat attentively waiting for the last bit of cone that he knows I usually reserve for his treat. “Is it okay to give Calvin a bit of my yogurt?” Michael asked, “it’s sugar free.” Having recently liberated Calvin from his rigorous, exacting Ketogenic diet, I said, “probably.” Michael spooned in a bit of his mixed berry frozen delight and Calvin laughed, the yogurt dripping out the side of his half open mouth. He seemed to like it, though perhaps his peculiar laugh was more due to a painful ice cream headache, or worse—a looming seizure.

The entire way home Calvin squealed and writhed spasmodically in the stroller, which he hasn’t done much lately. The events of his day caused us to worry that a seizure was brewing, but he got through bath and dinner unscathed, and then led us outside to walk around the house clad in skinny, unmatched pajamas and felt slippers. Michael took the reins while I grabbed my camera. The fading light was beautiful, it was the calm before the storm—Hurricane Irene on its way. As Calvin and Michael circled around the car I picked off a few good shots then noticed smiling Calvin go stone-faced and silent. “Uh-oh,” I said and crouched down to regard his face. He stiffened and pitched back into Michael’s arms, who then carried him like a bundle of sticks, or a board, into the house. By the time we got Calvin to the couch his face was dark and ashen, like the skin of an unpicked blueberry. We caressed his face, Michael kissed his head, while we waited for it to end.

Thankfully, the seizure was shorter and less violent than most, perhaps a sign that the drugs are helping, albeit not well enough. Sure that it was over Michael carried our sweet little disoriented boy upstairs and tucked him into bed, then slung the baby monitor around his head to listen. Outside the rain began to fall and the wind kicked up. Our first hurricane in Maine was about to arrive, perhaps our last, but for Calvin it’s one vicious storm after another.

peanut butter puffins

I spent the first few days of my trip to Seattle staying with my oldest friend Katie, her husband Greg and their seven-year-old boy, Cooper, in their cozy home on the outskirts of the city. I flew solo, Calvin being too difficult to take along on such a journey. We spent hours lounging on their large overstuffed couches with coffees or beers in our grasp, just shooting the shit, joking and catching up on recent news. I sat in front of their huge picture window with a view of the street below—not unlike the bay window in my old San Francisco flat—melting into the scene like wallpaper. All tension in my muscles fell from my bones like Greg’s juicy barbecued pulled pork (pronounced “poke”) stewing in the crockpot.

The morning after the reunion, four hours after crawling into bed with a hoarse voice, I awoke to the little peeps of Cooper and his sleepover pal Cody, chattering in the room next door. Suddenly, Eddie Mercury and Queen boomed “We Will Rock You,” a favorite of Cooper’s that he jams to several times each day. All attempts at falling back to sleep were fruitless so I peeled back the sheets, threw on some sweatpants and, rubbing my eyes, padded upstairs to get some strong coffee. My favorite spot was vacant so I propped myself up against the cushions, my legs curled up underneath me, and warmed my hands around a hot mug.

Slowly the house awakened, the boys finished their Mario Brothers game on the Wi then climbed up onto bar stools to eat breakfast. The two blondies each had a bowl of Peanut Butter Puffins that looked like Captain Crunch on steroids. Still groggy, on my way to get some more coffee I reached into the open box and grabbed a few crunchy morsels. The boys asked me for some more. “Sir,” I said to Cody, whose toothless smile and golden-white hair accentuated his sparkly blue eyes, “would you like me to serve you some more Peanut Butter Puffins?” “Yes, please,” he chirped with a grin. “Tell me when,” I continued. Then to Cooper, who was waiting eagerly, “Gentleman, would you like me to serve you some more Peanut Butter Puffins?” “Yup,” he replied, and watched as the golden pillows tumbled out of the box dinging into his bowl, sweet dimples forming in his chubby cheeks. I asked both of them if they wanted any coffee. They politely declined.

Acting the waitress while serving the two boys at the counter was as much my fantasy as theirs. I just wished Calvin had been sitting between them smiling up at me. I'd pour him a bowl and watch as he'd pop the crunchy delights into his mouth one by one. He’d be beaming from ear to ear, begging me to gobble him up, just like a happy yellow bowlful of Peanut Butter Puffins.

a man and his family

If you can't view full screen, zoom in to read captions.

A Man and His Family by Christy Shake

slice of life

There’s nothing quite like going to the airport to get a slice of life, at least a slice of life for those privileged enough to fly, but a slice nonetheless.

When I fly I always think of three things. I think of the time I was trying to get home for my father’s funeral on an overbooked flight. I had been bumped and a kind man, at seeing my grief, relinquished his seat for me. I think about the time I flew from San Francisco to San Diego with Calvin who wailed the entire time, though I held him in my arms in the bulkhead space rocking him in vain. And I think about what a crazy kid Calvin must seem to others—albeit to me too sometimes—an unusual little bugger, flailing and kicking and squealing, and I wonder what goes through the curious minds of oglers. But when I travel by myself, as I do as I write this, I realize there are a whole lot of unusual buggers out there to enjoy.

Take for instance the kid in line behind me waiting to board, who mustn’t be a day over nineteen, looking like a young Jude Law with what seems a spray-on tan over his flawless skin. He keeps messing with his hair, making sure that that perfect feathered auburn wave crests just so over his impeccable eyebrows. I can’t stop looking at him wondering if it's eye make-up. Whatever it is it looks damn good, at least if you like that sort of thing.

Then, having hurked my luggage into the overhead bin and fastened my seat belt low and tight around my lap, I get to check out the seemingly endless line of passers-by. One young guy goes by with backpack straps partially obscuring the words on his t-shirt that say, “stoner to-do list.” I’m really curious about the list of items that follow but he cruises by too quickly to read them.

Following is a young woman who looks as if she is impersonating “Mommy Dearest,” her white pancake makeup accented by eyebrows that could have been drawn on with a Sharpie and puffy lips shiny and red as a Habanero pepper. Her hair is pulled back tightly, or greased back, I can’t tell. All I can think of is “Morticia,” the name my sister gave me when I dyed my hair black and wore extensions.

Next a Goth couple slink by, both with long dreaded ropes erupting from their scalps, one brunette, the other ebony black tapering into frizzy wicked points. She’s got schoolmarm glasses and a stud in her nose, neither of which I mind. She won’t look at me, though I’m sitting right below her trying to catch her gaze so I can flash her a smile.

Just then I realize, in this kind of crowd, Calvin would fit right in—isn’t unusual at all—in the scheme of things, this oh so incredibly diverse human slice of life.

photo by Michael Kolster

un-welcome

I slept most of the way home on the red-eye, my hood pulled over my eyes. It felt more like a month of Sunday’s since I’d been home instead of less than six days. I was missing my boys ... a lot.

The plane pulled up to the gate while I brushed my hair, tied it back and popped a stick of fruit flavored gum into my fuzzy mouth. With luggage in hand I rolled it up the ramp, down the escalator and out the automatic doors. Across the street in a small parking lot waited Michael and Calvin walking around the car, Calvin banging and mouthing it in his usual style. I whistled like we do when we are looking for each other in the grocery store. Michael looked up and met me with a kiss, then I bent down to give Calvin smooches which seemed to make him laugh, though perhaps he was laughing at something else that was either present or just in his mind.

I loaded Calvin into the car regarding his poor complexion. On the ride home he frantically kicked the driver’s seat, fingered incessantly and stuck his hands on his ears umpteen times while his eyes rolled like marbles in his head. He bit his shoe and leaned over to yank my hair, but he never really looked at me, lost in his own little autistic, retarded, epileptic, medicated world.

The reunion weekend had been spent with friends and their kids and their friends’ kids. The juxtaposition between their walking, talking, looking, asking, answering, running, playing, imagining kids and Calvin couldn’t have been more stark—my child appearing more to me now like a psycho than anything, the recent increase in his seizure medicine seeming to exaggerate his idiosyncrasies.

Michael and I drove home mostly in silence as I sat next to Calvin trying to prevent him from poking his eyes. The weekend's happy echoes and warm hugs of my classmates, friends and family trailed far off in the distance behind me.

strangers on a train

I often think of a story that my brother Scott shared with me years ago. I believe he had read it in a favorite book of his. In the time that has passed since he told me, the details have blurred a bit, but the gist of the story remains vivid in my mind.

As he recounted the tale, he described a scene on a train. In my mind I imagine a commuter train, crowded with men and women wearing smooth dark business suits, some with briefcases in their laps, snoozing or with their noses buried in newspapers, passing time on their way home after a long day’s work.

One businessman notices a fellow whose three little children are raising hell in the train car, racing around causing a ruckus and bothering the other passengers. The father doesn’t seem to notice—or doesn’t seem to care—that his children are acting out and being so disruptive. He’s just sitting and staring out the window at the world whizzing by. On behalf of the other passengers the businessman approaches the father and says something like, “excuse me sir, would you mind getting your kids under control, they’re pestering the other passengers.” The father appears in a daze and doesn’t respond. “I said excuse me, can you please restrain your kids, they—,” and the father slowly looks up at him with a drawn face, his eyes sunken and dark, “oh—I’m so sorry. You see, the kids just lost their mother and we’ve just come from the funeral. They haven't had much sleep and they’re not really themselves. I apologize,” and he went on to gather his kids quietly hushing them to calm down. The train rolls on in silence.

I try to remember this story because at times, more than I’d like, I’m apt to jump to conclusions about another person’s actions or motives. Often I hear friends or strangers passing judgment on someone whose reality they could never truly know. At times I fail, thinking somehow that I know why someone cut me off while driving, gave me a scowl or acted rudely. I remember moments when, in my darkest days of grief during Calvin’s first few years of life, when passing strangers on the street or in the grocery store would tell me that I should smile.

I can never really know what the person standing next to me in an airport, at a crosswalk or at a crowded farmer's market feels, has experienced, or believes. How could I? Best thing I can do, though, is to not make assumptions, keep an open mind, give folks the benefit of the doubt. I suppose it's pretty simple—it's the very same thing I’d want from others.

photo by Michael Kolster

backyard boy

Back in grade school I had crushes on a few different boys. At my 30th high school reunion on Saturday night I was thinking of them. One of them, my girlfriend Marianne reminded me, was Chris, the skinny drummer from the Partridge Family band—the first one—with the dark hair and eyes, big ears and gap between his teeth whose photo appeared on the back of the maroon colored album next to his siblings, Keith, Laurie, Danny and Tracy.

In fourth grade I had a crush on a boy who would soon become a drummer. His name was Jim and he lived on a nearby street. He was skinny too, with freckles and straight brown hair that was never too long. He hung out with some other neighborhood boys, Karl and Tim, the three of them magnets for several of my friends, but mostly for me—a total tomboy—and my friend Monica who I was recruiting to climb trees, race Hot Wheels, squash slugs and forsake the baby dolls she liked to play with.

One afternoon I invited the three boys over to my house to play. We decided to try a game of baseball, so I rummaged through a ragged cardboard box in the garage and fished out handful of soft worn leather mitts, a wooden bat and a dirty ball. We headed to an open part of my back yard between several huge maples, a bank of spruce and a couple of apple and pear trees.

In what seemed like my first up-to-bat, Jim, the boy I had the big crush on (and would continue to have for several years) got up to bat. In my mind he was wearing dark blue jeans, a slim navy, white and red striped shirt, white converse high-tops and a ball cap. He carefully positioned his feet apart, the heavy bat nearly resting on his shoulder. With great concentration I tossed the grapefruit sized ball in a high arch, it descended and met the bat square on with a crack. That menacing ball slammed straight into my face, no time for me to duck for cover. My nose caught the ball—which noses aren’t meant to do—and it started bleeding into my mouth. I cried.

With great disappointment those cute boys decided to hang it up just as it was starting to get fun, even as my beak began to swell as I held a tissue to it. I sadly watched the sneakered trio sulk away, their heads bowed, scuffing their feet in the dry grass.

That boy Jim and I have kept in touch over the years, though now he towers above me, the freckles having long since faded. He’s got two-year-old triplets of his own and he still likes to keep up with Calvin. Saturday night at the reunion we sat together in moulded plastic chairs drinking pints of ice water. We looked fondly at each other, our friendship having achieved a comfortable staying power and the feeling of soft worn jeans, and I blushed at the kind things he had to say about my writing, my cause. He told me that he wanted to become famous so that he could be the spokesperson for epilepsy advocacy, like Michael J. Fox is for Parkinson’s. He said he wanted to be rich and throw a ton of money at epilepsy research and get others to do the same. My heart swelled and my skin tingled with delight at hearing such generosity of spirit. I have to admit that I hope he gets a crack to do just that. And thinking back, It’s not a wonder that I had a crush on that sweet little backyard boy.

detail, photo by Michael Kolster