out of reach

Every summer when I was a kid my father hitched the trailer to the back of our olive green Suburban and set out on vacation. My mother spent days preparing food for the trip and packing essentials like towels, cooking supplies and dimes for the shower. Sometimes our destination was the Washington coast or the white hot Oregon Dunes, but one of our favorite spots to land was Sun Lakes in eastern Washington, a three-and-a-half hour drive from home.

I often brought a friend along and we passed the weary journey lying on blankets in the back of the truck playing cards and telling jokes. The drive was hot and arid, winding through desertous terrain, craggy vertical bluffs rising high above the narrow road on one side and cascading steeply down the other into a meandering green-black river. We’d reach the park in the afternoon, and as my parents set up camp my brothers and sister went to jump the cliffs and my friend and I, though we were only ten or so, were free to go off and explore a nearby lake.

Barefoot in our bathing suits, we walked on a rocky path watching hopefully and intently for snakes, our feet and ankles powdered in a fine ruddy dust. The base of the path widened and spilled out onto a small, sandy outcropping at the water’s edge, sprouting tufts of sturdy grasses and a shady poplar tree. We dipped our toes in first. The water was clear and pleasantly warm, having been bathed in the sun for weeks on end. Carefully, we slid out on the smooth, slimy moss-covered rocks, gripping with our toes and balancing ourselves with outstretched arms, as if on a tightrope. Several yards out it remained shallow. Golden-green milfoil tickled our calves as it gracefully waved just below the water’s surface, which was glassy and adorned with the sky's billowy white clouds.

Soon we were joined by a lithe little girl of about four wading on her own, her watchful parents several yards away chatting with another couple. The child slipped on the slick shallow outcropping and plopped, just barely under the water. Time stood still. She remained motionless except for her wavy blond hair undulating and mingling with the milfoil, her arms floating at her sides, her ivory skin contrasting sharply and sickeningly with the dark submerged rocks. She was almost within our reach, but we stood frozen in shock. Within seconds an adult splashed clumsily to her rescue, yanked her up by her arm and held her as she gasped and cried. My friend and I stood by utterly paralyzed and helpless.

I experience these same feelings when I watch Calvin have a seizure. He is just within my reach but there is nothing I can do to help. I can only stand by and watch from where I am, paralyzed and powerless. Only when it ends can I scoop him up, sometimes while he's still gulping for air. I just hope one day he doesn’t drown amidst the surging electric waves that rhythmically lap against his precious brain and from which I cannot rescue him.

photo by Michael Kolster

perspective

Perspective. It’s what I must remind myself to keep, particularly regarding Calvin’s intractable epilepsy. The alternative is to be forever imprisoned in the dark chasm of despair, grief and self pity that I fall into every time Calvin has a seizure. And, as time passes, Calvin’s seizures seem more and more likely to continue for the remainder of his lifetime despite the potent drugs he takes. I must also keep perspective about the drugs. Although they are likely causing bad side effects, further compromising his development and possibly changing Calvin's personality, the current ones seem to be thwarting at least some of his seizures.

Perspective, though, comes not only from within but from the powerful stories shared with me by other parents of children with epilepsy, which sadly, are many.

Recently, the father of a fourteen-year-old boy reached out to me. He had read my blog and wanted to tell me of an uncommon treatment that had helped his son. At the time he emailed me his son was coming out of his third medically induced coma meant to stop his seizures. He went on to write more about his child:

“no issues at birth, normal delivery. Began having seizures at 3 mos. following DPT immunization. Hundreds of myoclonic seizures per day. Lived this way until aged 7, when seizure type flipped abruptly to grand mal. About 80% of his seizures last longer than 30 minutes. They can go up to 90 minutes. He desaturates in many of them. Significant brain damage. Fourteen years old but developmentally about 3-4 years.”

I read this and I stopped in my tracks, tears tracing lines down my dry face. This parent was reaching out to me while his son was in a hospital deep in coma. So selfless. So empathetic. So incredible.

Shortly after starting this blog an Alum from my college swim team wrote to me about his and his wife's twenty-year-old son who died from complications of epilepsy after seventeen years of fighting it:

“Long and short of it, they never really controlled his seizures, although they were managed pretty good during the day. In school, if he was tired, or fell asleep, he would have them. Every night he would have them.”

He was their only child.

So I try to keep perspective, to be mindful of others' plights, to show compassion and understanding and to avoid the gravity of narcissism. I must realize that, although Calvin has it pretty rough, as do we at times, there’s always someone whose got it worse, and I want to be there for them, reaching out with all I’ve got to give. 

sleep

Calvin and I just woke up from a nap. I feel like I could sleep the rest of the day and still be wanting more. 

photo by Michael Kolster

wild geese

You do not have to be good.
You do not have to walk on your knees
for a hundred miles through the desert, repenting.
You only have to let the soft animal of your body
love what it loves.
Tell me about despair, yours, and I will tell you mine.
Meanwhile the world goes on.
Meanwhile the sun and the clear pebbles of the rain
are moving across the landscapes,
over the prairies and the deep trees,
the mountains and the rivers.
Meanwhile the wild geese, high in the clean blue air,
are heading home again.
Whoever you are, no matter how lonely,
the world offers itself to your imagination,
calls to you like the wild geese, harsh and exciting--
over and over announcing your place
in the family of things.

- Mary Oliver -

photo by Michael Kolster

dour summer day

The house I grew up in was at the end of a sharp bend in a long gravely lane scarred with potholes. Abundant trees, groves of magnolia, fir, spruce and maple, flanked and shaded the road that hosted three other brick ranch style homes.

My best friend lived two houses away and because none of the yards had fences our expansive lawns spilled into each others'. The houses themselves, all resting on a gentle slope, were far apart and hidden by colossal camellia hedges, bushy rhododendrons and firs.

One hot summer day, when I must have been fifteen, like most days I was out doing yard work. I was about to start mowing the “strip”—the long skinny piece of lawn at the top of our gravel driveway abutting our neighbor’s shrubs.

The echoes of my friend’s black and white collie, excitedly barking, rolled down the hill from their backyard deck and I could hear splashing in the oblong swimming pool. But there was another noise that I couldn’t identify—a surging howl. It didn’t sound human but then it didn’t sound completely animal either. What else could it be but another dog that had come to play?

I yanked the black rubber handle of the pull cord and revved the noisy engine of our heavy push-mower; the smell of gasoline filled my nostrils. Unaware as my father came up behind me, I flinched when he gently placed his large hand on my shoulder. Looking up at him, I saw his solemn face. I cut the engine. In an unusually mild voice—his warm hand still firmly touching me—he told me that there had been an accident at my friend’s house. Her two-year-old sister had fallen into the pool and nearly drowned. Her mother, my dad said, had pulled her out and resuscitated her but there was no way of knowing if she would recover or even survive.

It took a while for the strange and harrowing news to sink in. Slowly I pieced together what I could. The unusual animalistic sound I had heard, standing there in the stillness of the summer heat, was the sound of my friend’s mother having discovered her child motionless in the water. It was the sound of horror, of panic, of desperation, and it was completely foreign to me then.

Now, in my own grief for my afflicted son and for my loss, I cannot help but think often about the torment of my friend’s family so many years ago—when I was a youth—not knowing then the immense love that a mother has for her child. The girl survived to have children of her own. More so, her mother survived—strong, patient, faithful, superhuman—an amazing and beautiful mother to behold. I will never forget that mother, that moment, that hot dour summer day.

photo by Michael Kolster

clarity

The other night while lying in bed I got an idea for a post. Hesitant to turn on the light I fumbled for my pen and, since I did not have my pad, I held my flat hand up to the tiny dim glowing green light on the baby monitor. In the dark I began to scrawl the idea into my palm, but the pen refused. I figured I’d coax the stubborn ink into service by scribbling for a while but it still wouldn’t come out. Finally, I gave up, hoping I’d remember the next morning to write a post about underdogs.

At eleven o’clock Calvin woke and wanted some water. He sucked down a bottle so I padded to the sink to refill. In the bathroom I was stunned, and amused, to see my entire palm blackened by a mass of smooth overlapping inky loops. How could I have not seen these scribbles earlier? I was incredulous. I crawled back into bed and tried to recreate the scene in front of the monitor, but this time the marks were obvious to me, even in the dim light. I was most puzzled. Maybe earlier I hadn’t held my hand as closely to the light and therefore couldn’t see the contrast of ink on skin, or perhaps in my mind I had, for whatever reason, predetermined that the pen would be rusty so my eyes obeyed my brain’s preconception.

As I rolled over to go back to sleep, making sure not to rest my tattooed palm under my cheek, I wondered how many other of life’s images or moments I have been blind to, or have simply and utterly misread. As I was drifting off to sleep I remember thinking that I must focus on keeping my eyes and ears and brain wide open to drink in all that the world has to offer, without assumption or prejudice, as if I’m feeling each moment and learning each lesson for the very first time. Only that way can I hope to experience and sense it all, with clarity.

underdogs

I’ve always rooted for the underdog—the tortoise instead of the hare, the second-seat swimmer, the under-privileged kid, the young “inexperienced” idealistic presidential candidate, and now, my disabled son.

In the summers of my high school and college years I coached a couple of swim teams in Washington and Oregon. My favorite was a golf and country club team that had a history of hanging out comfortably at the bottom of the twenty-team league. On the first day of workouts, at the modest pool with its mini snack bar, about thirty kids showed up, most of them straggling onto the deck late, towels casually hung around their necks. That day we had fun playing pool games like sharks and minnows. I encouraged them to invite their friends to join, whether they had swum on a team or not, and posted fliers enticing would-be athletes. Within a couple of weeks 140 kids between the ages of four and eighteen, some barely younger than I, were swimming laps in wavy crowded lanes each morning.

I demanded a lot from my swimmers, and in return I worked hard for them, staying up until the wee hours of the morning strategizing unbeatable lineups for meets. The kids put in their best effort, were devoted and punctual because they knew I expected nothing less, and they delivered.

One rule I had for each swimmer was to compete in every event in his or her age group. At the last home meet, I was sitting on the hot deck by the side of the pool, surrounded by little kids, my clipboard in hand. One of my ten-and-under girls shyly approached me. She said, “coach, Jenny doesn’t want to swim the 100 I.M. She says she can’t do it.” I told the girl that I had complete confidence in Jenny and I wouldn’t scratch her from the event. If Jenny chose not to swim, I said, then it would have to be her decision. The girl sulked away.

A few minutes later I watched little Jenny step up hesitantly on the slanted wet block, her big suit sagging off of her skinny frame. Flanking her were just two other girls. The starter fired his gun and the swimmers flopped askew into the cool blue water. Butterfly. Backstroke. Breastroke. Freestyle. The three flailing contenders kept edging each other out during the suspenseful race. In the last few yards Jenny, neck and neck with the others, poured it on like I had taught her, and nailed the finish hard. The image of her gasping for air with sheer surprise and glee on her face brings me to tears as I write this. She was so proud. She was the underdog, and not only did she do what she didn’t think she could, she had won her first blue ribbon.

Our team ended up second in the league that year, all of us underdogs. I think of that summer and of those kids often, especially when I am with Calvin, coaching him to crawl upstairs, to climb onto the couch, step into the bath, pull his shirt over his head and walk where he doesn’t want to venture. I know if I expect a lot of him and encourage him to never give up, he will deliver. And he does. My little underdog is a true winner.

photo by Michael Kolster

lost to me

From time to time, and more often than I’d like—though simultaneously cherishing the feeling—I am confronted head-on with my loss, the loss of what could have been but will never be.

Sometimes simple moments appear and move past me, like the toothless little girl, skipping in rubber boots with her father saying to him, “it’s not mud, it’s watery dirt.” Other times it’s a young toddler sitting happy and confident, bobbing on his father’s shoulders. Still others might be crisp college-bound kids with skinny necks, neatly dressed, strolling slowly arm in arm with their parents down a tree-lined campus path.

These images, and untold others that I encounter every day, are reminders of what I will likely never experience with Calvin. In the beginning, seeing them was difficult to bear and I’d run for cover, sheltering painful sobs in my sleeve. Then I gradually realized, over many years, that life wasn’t going to stop for me. It would keep going on around me whether I liked it or not. Babies would be born, they’d learn to crawl, to speak, to ride bikes, to read, to one day have sweethearts, and so on. These are things to celebrate even if it isn’t my child who’ll be doing them, I say to myself. My brain now acknowledges this, though my heart has had trouble keeping up.

A young man I met briefly a few years ago, a former student of Michael’s, has reacquainted himself with us after my invitation to help me on a project. He came up from New York and spent a low-key weekend getting to know Calvin and hanging out with us in our home. He was simply a delight, courteous and thoughtful.

When the weekend was over, as I drove him to the airport, I embellished emotionally on Calvin’s birth and epilepsy. At the drop-off curb, I got out and hugged my new friend farewell. I was sad to see him go. As I drove away, a sting of sorrow, intertwined with a warm happy glow, twisted and tightened around my heart. I realized that this young man, who a handful of years ago was just a boy, was young enough to be my son. What a wonderful son he must be, I thought. My mind flooded with so many images of things lost to me because of Calvin’s circumstance, images that layered at first like a collage and then became a sorry stack of one faded snapshot after another in a chain link reaction of loss over time.

But then, I thought of him again, the young fellow, and how he has become a part of my life, if only for a moment. I feel so lucky for my fondness of him and for the mere fact of our meeting to exchange ideas and emotions. My loss has taught me to take nothing for granted and to see, with utter clarity, the gifts bestowed onto me by others. Perhaps what has been my greatest loss—Calvin’s lack of thriving development and well-being—will be in some weird and wonderful ways also my gain.

Though if I were asked, I’d always choose a healthy Calvin who could make some other mother feel the same way that my new friend has kindly made me feel.

despair

Despair. It’s the familiar, loathsome feeling that knocks me down to the ground with a nauseating punch to the gut every time Calvin has a seizure. What’s worse is when his seizures occur long before expected and in the face of having increased a bittersweet drug that appeared to be holding some promise for possible seizure freedom. That’s what happened this morning.

Calvin had had two pretty awful days in a row complete with all of the harbingers of an impending seizure—manic screaming, crying, general irritability and plenty of head-banging. I had told my mother-in-law that if it hadn’t been only six days since Calvin’s last seizure I’d be certain he was about to have one. Well, he did.

After Calvin’s seizure at two o’clock this morning Michael and I brought him into bed with us. When I finally dozed off, after I had made sure Calvin was asleep, I dreamed. I was at the grocer with Calvin and a new nurse, there to help me cart him around and watch him while I shopped. Rounding the end of an aisle I glanced back at Calvin and saw the horror of his pasty-gray face, his body pitched awkwardly sideways in the cart. His eyes rolled back in his head and he began to seize. The nurse had failed to bring the emergency Valium that I had given her before we left home. The long thin plastic applicator on the vial in my backpack had broken off and was worthless. All I remember thinking, in my panic and fear of an unstoppable seizure was, “what next?”

At that moment Calvin woke me from my nightmare, pushing his trembling feet hard into my side. In the darkness I heard the quiet swallowing sounds characteristic of the repeated partial seizures he used to have, which often lead to status epilepticus—a dangerous and sometimes lethal prolonged seizure, which always landed us in the emergency room and subsequently in the pediatric intensive care unit.

On countless occasions I’ve awoken—alarmed and sweating—from nightmares of Calvin having a seizure only to hear and see him literally having one. Simply put, epilepsy is an infinite nightmare of despair and worry that follows us during our weary waking hours into our deepest sleep, and then, with no uncertainty, greets us, insidiously, each and every dimly lit dawn.

Please share Calvin's story with others and help bring us one step closer to a cure for epilepsy. It's not hard. Just do it one story at a time.

ode to my brothers

brothers, I adore you.
so kind and wise beyond your years,
you always dry my tears,
and seem to know what’s wrong.
when I’m weak you’re so very strong.
you live in places far and wide,
in so many countries and of so many races,
though many of you live apart from me,
you all live forever in my heart,
and my heart is yours to keep,
you are my peeps.

brothers, you help my spirits soar,
keep me coming back for more
of your clever wit, your jokes,
you are all incredible blokes with such integrity,
I’m one of the luckiest gals in the world,
to have so many pals such as yourselves,
and though I have to share some of you with my man,
try as I can, I’ll steal you away some day,
you know who you are,
you are my brothers, near and far.
I love you through and through,
it’s true.

Kerream Jones

ode to my sisters

sisters, you amaze me.

you let me cry or cuss or raise my voice.

you listen silently, so calm,

and hold my hand in your palm, softly.

sometimes you don’t say a word,

but like a beautiful bird,

you wrap your wings around me with grace,

and hold me in your warm embrace.

you are patient and kind,

and you understand my heart and mind,

we are entwined.

sisters, you lift me up so high,

and make me laugh until I cry,

or cry until I laugh.

you’re always there when I need you most,

no matter which island or coast you live on.

perhaps we don’t talk for weeks or months at a time,

but I know you are mine none-the-less.

you are all the best.

you know who you are,

you are my sisters, near and far.

I love you through and through,

it’s true.

Sarah Detweiler

a part of everything

As a girl I spent hours by myself. On long, hot summer days, after my yard work was finished, I stepped into my navy and white hibiscus print swimsuit and grabbed a large citrus-colored towel edged with orange pompoms. In the freezer were trays of frozen grape Kool-Aid cubes. With a single paper towel folded twice lengthwise I wrapped the bottom of the cube so I could lick it like a Popsicle, staining my tongue and lips dark purple.

Out on the short grass I spread my towel in a spot of full sun between a tangled flowering cherry with a shiny, striped trunk and a few of my favorite gigantic maples, each sporting leaves the size of dinner plates. Being the sun goddess I was, I squeezed aromatic oil from a burnt sienna Hawaiian Tropic bottle and smoothed the thick liquid over my bronze limbs. I lay on my back gazing up at the flawless sky. Often, a pencil thin white line trailing from a tiny speck streamed diagonally across my sky, then widened into a billowy cotton swath eventually dissolving into a sugary haze, scattered into scalloped waves by the wind. Other times I heard only the familiar drone of a small aircraft buzzing low behind the trees.

When Calvin was about two and a half, shortly after he had started having to take drugs for his epilepsy, we used to lie on that same orange, yellow and green flowered towel from my youth. As planes passed by I’d remark about their sound and point into the sky, “there’s an airplane up in the sky, do you hear it?” I wondered if he understood what I was saying; it was clear he couldn’t see them.

I think back fondly of my time alone outside with the world, the oneness I felt with the universe, even at a young age, and I know—and grieve—that Calvin will never appreciate that same independent solitude that I enjoyed as a girl in my own backyard. But still, Calvin and I, like that jet stream, began with a burst of energy—in sharp focus—making a deliberate mark, and as time has gone by we've morphed and changed and become softer, more beautiful, by shifting winds—sometimes harsh—that have shaped and sculpted us until finally we'll dissolve and, most sublimely, become a part of everything.

ain't no saint

My husband Michael is no saint. Thank goodness, because neither am I. Somehow I wonder if saints are really all that much fun. I’m pretty sure I’ve never met one, I guess because I just don’t run in saints’ circles. 

Unlike my images of a saintly day—perhaps sitting erect on a carved wooden pew or perched on the edge of a cloud or a stone cherub fountain, contemplating—Michael and I mostly putter around the house in our grubbies happily tending to chores, minding Calvin, cooking meals, watching movies, warming ourselves by the fire, or glued to our laptops. We do all this as if performing some sort of silly dance, spinning and looping around each other, sometimes in a kind of do-si-so, and occasionally stepping on Rudy the dog since he is always under foot. Our relationship is copacetic and loving, even in the most stressful or irritating circumstances—that is—except when we get the grumpies.

We both get the grumpies. I've mentioned them before. I get them in the mornings because of my perpetual state of sleep deprivation and my want for coffee, like an addict who needs her fix. Michael gets them at the end of the day when his blood sugar drops below acceptable levels, especially if he misses his daily bagel and whatever else he eats for lunch—or doesn’t. We seem to manage most of the time, however, to bite our tongues or steer clear of the other when the grumpies rear their ugly heads—though that's not guaranteed.

Perchance, in the grip of the grumpies, we should stumble and let out a cantankerous shriek or stream thereof—or more likely an ill-tempered F-bomb—it usually only takes about five minutes with our nose in a circle on the chalkboard for one or both of us to apologize, or grovel. Yes, forgiveness is one of Michael’s greatest virtues, and he’s not bad at apologizing, either. I suppose I can say the same for myself. It's comforting to know that when we need to let off steam—and inevitably one or more of George Carlin's seven words you can't say on television—we don't judge each other. It's just how we survive this crazy circus we call life.

So, we ain't no saints, we're just a couple of loving, cussing, do-si-doing fools.

Halloween 2010 photo by Michael Kolster

perpetual state

This is from the early days:

you say that i am in a perpetual state of upset and crisis.

are my feelings dirt? my child is sick. sicker than sick. you don't think that gives me cause to be in a perpetual state of upset? and if that were really true how do you think i would be able to do all that i do?

change his diapers clean up his spit-up dress him undress him keep him from eye poking keep him from biting cut his hair clip his fingernails shade his eyes from the sun walk around the house with him all day long dance with him make his meals feed him clean him up dress him give him medicines that you don't even know what they are teach him to go up and down stairs to hold a spoon to catch a ball to take off his socks to give things to me to stand up from a chair to not touch the stereo to not touch the wood stove to get into standing sooth him when he is crying make his doctor's appointments make sure he is getting proper nutrition and balance his diet contact insurances and all of his specialists take his temperature monitor his seizures keep track of his blood levels call the lab call the pediatrician call the dietitian call the neurologist call to get nurses train the nurses research epilepsy research eye specialists research eye surgery research seizure types research epilepsy centers research brain surgery research medicines research carnitine deficiency call the pharmacy reorder his medicines know his medicines know the side effects give him water and cover him at night love him with as much patience as i can.

i need compassion. i don’t see it. makes me want to stop trying but i won't because that is not who i am.

photo by Michael Kolster

indigo eyes

A friend of ours was telling us about his poor vision as a kid. One thing he recalled about the day he got glasses was, for the first time, seeing the incredible detail of individual leaves on the trees. He had held leaves before, seen them on the ground and knew they came from the trees, but before he got glasses the trees’ canopies appeared simply as a mass of color—green in summer and golden or scarlet in fall.

In the early days, before Calvin’s epilepsy eclipsed everything in his realm, I used to think a lot more about his vision, or lack thereof. His world existed only within a few inches from his face. Even after getting glasses when he was eleven months old, it seemed that, although his acuity may have improved from 20/1000 to 20/130, his brain could only interpret that which was a few feet away and static or slow moving. It took years for Calvin’s visual tracking to develop the slightest bit, and the seizures and drugs haven't helped any. He still doesn’t appear to register passing cars or trucks or much of anything further than ten or fifteen feet away.

I remember one summer when my nephew was visiting. I had seen a northern flicker woodpecker in a tall backyard pine and had pointed it out. My nephew spotted it almost immediately, though its brownish-grey speckled body blended well with the tree’s bark. At that moment it struck me how amazing our eyesight is and how Calvin would likely never experience seeing this kind of fine detail in the visually intricate world that surrounds him.

Instead, we bring the world to Calvin. I walk him to the trees so he can see and feel the rough, ridged bark. I pick him up to touch and regard supple veiny spring leaves and brittle autumn ones. I hand him prickly pine cones to explore and he inevitably wants to eat them all. Through this narrative of life Calvin has learned to see as much through sound and touch as through his amazingly beautiful indigo eyes.

endless tether

Friday night, after having had a bit of trouble falling to sleep, Calvin woke up every hour from eleven o’clock on.

Earlier in the day Calvin's nurse and I were discussing his new found strength. She mentioned what a good day he had been having—happy go lucky, walking well and exploring a lot. We agreed he’d been having more and more days like this, but something didn’t sit right with me and I replied, “let’s hope it’s not too good to be true.” Well, it was.

Yesterday morning, Calvin was quiet and pale. I pointed out to Michael how his eyes were at half-mast, kind of vacant and dead as if in a drug stupor. (Who am I kidding? He is in a drug stupor.) Calvin was walking around like the drunken sailor he used to be when he was deep under the spell of three or four seizure medicines and the Ketogenic diet, having trouble negotiating corners and nearly running into door jams. On top of these suspicious signs it had been seventeen days since his last seizure, so he was due.

At nap time, Calvin settled snugly into his crib under his comforter and I put on his lullaby music, softly. I crawled into bed in the adjoining room hoping to get some much-needed shut-eye myself. Just as I was drifting off I heard Calvin’s muffled cry and I raced to his crib. In the throws of a tonic-clonic (grand mal) seizure, rigid and trembling, his expression looked half frightened and half dead, his skin turning dusky without oxygen. I clocked it, and after about two and a half minutes of convulsions it started to pass, his little whimpers accompanying unsuccessful attempts to suck his thumb.

Adrenaline made it easy to lift his forty pounds of limpness from down inside the crib, and I tucked him into bed next to me. I looked at him and, for a split second, I feared the very worst; he was perfectly still, his face drained of color and his eyes stared dead ahead, unmoving, like in all those morbid movie scenes. I frantically shook him calling, “Calvin!” and he roused, his eyes resuming their usual jerky wandering.

As I hugged Calvin close to me, my hand against his soft bare chest as he fell asleep, I felt for his heartbeat and watched the rise and fall of his body with each breath. Then staring up at the crack in the ceiling where the beams meet I saw a tiny wisp of cobweb fluttering pathetically in the slight air current, endlessly and hopelessly tugging for its release. In my heart I felt the same utter futility, wondering if Calvin might ever escape being tethered to a life of endless seizures and drugs. I cried myself to sleep.

big strong boy

Yesterday, I sent Calvin off to school in the long yellow bus that stops at the curb in front of our house. This time he got on through the front stairs instead of being carried on the lift seated in his heavy, cumbersome push-chair, a cross between a stroller and a wheelchair. Seeing him sitting in the front of the bus, strapped into a booster seat, I felt a great sense of liberation, both for me and for Calvin, and I gave his friendly bus-driver the thumbs up as she rolled away.

In the past few months Calvin’s muscle tone has greatly improved—allowing him to leave his push-chair behind—though it is unclear as to why. Perhaps the new seizure medicine is lowering the clearance of the other seizure medicine, which is known to cause muscle relaxation. Perhaps, since low muscle tone is a neurological condition, the fact that he is having fewer seizures may be allowing his brain to send his muscles the right messages to contract correctly. Whatever the cause, the kid is most definitely getting stronger, and that feels amazing.

Calvin is doing more things with less help, and while I am so happy and proud to see his progress, sometimes his new found strength scares me. At the same time that I am dreaming of him walking down the sidewalk with me to the playground or crawling into the car seat by himself, I also fear him not knowing his own strength and growing into this big strong boy who will unwittingly wring my neck with his incredibly passionate hugs. But I suppose that wouldn’t be a bad way to go.

Like everything else, though, my husband Michael encourages me to not worry about things that might be looming in the future, until we get there. We just have to take it one day at a time since what we deal with on any given day in the present is more than enough to worry about. Good, sound advice. Now if I could just learn how to take that advice and put it into action I’d be golden. Instead I'm a well worn worry stone. What can I say?

ruthie

When my son Calvin was three he started attending a preschool thirty miles away called Morrison Developmental center, which used to be called the Cerebral Palsy Center.

Three days a week a van came to fetch Calvin, along with me or his nurse, to shuttle him to the center where boys and girls, both typical and disabled, schooled together. On most days, when we rolled open the door of the coach, we were greeted by a pretty little girl, Calvin’s same age, sporting a huge smile, strapped into her car seat, her head tilted back and to the side. At seeing us she became very happy and animated, her limbs making the unmistakable spasms indicative of cerebral palsy (CP), not unlike Calvin. She loved to stick her tongue out at me and so I’d stick my tongue out at her and we’d both smile fondly.

“Hiiiii, Ruthie!” I’d say, and I’d ask her if she was happy to be going to school, at which point she’d excite again, perhaps simply because I was engaging with her. Ruthie’s smile brightened any room, and it was as much in her eyes as in her precious grin. Her skin was smooth and ebony, and her almond eyes shined beneath a beautifully rounded forehead, her black hair pulled back tightly into one or two puffs.

I remember once sweet Ruthie crying the whole way down to school. It killed me—no way of knowing what was wrong or how to fix it for her. Like Calvin, Ruthie couldn’t speak, though it seemed clear that she understood body language. Ruthie was also deaf. But at the age of four, when she got cochlear implants so that she could hear, she started to learn her letters and to read and write.

Ruthie’s parents, who have four young children of their own, adopted her from an orphanage in Uganda when she was two years old. She became an integral part of the family, deeply loved by her parents, three brothers and a sister.

Last week Ruthie stayed home from school with a cold and a mild fever. On Sunday Ruthie didn’t wake up. The emergency room doctor said to her parents, “sometimes, with CP these things just happen.” I’ve wondered if she suffocated. I’ve wondered if her fever spiked and triggered a febrile seizure that stopped only when her heart did.

Though deeply saddened by Ruthie’s sudden death, I find my thoughts of her drifting off to fears for my own child. I wonder if Calvin will meet the same demise because of a simple cold or perhaps pneumonia. I worry, particularly in the winter months, that he’ll get the flu, spike a fever and have a bad seizure that won’t stop. Sometimes I think the worst, but then I remember I must live in the present and I must love Calvin like there is no tomorrow, as I am sure Ruthie's family did too.

Ruthie

yesterday and today

Yesterday. Terrible, maniacal screaming. No stopping it. Blue hands. Blotchy complexion. Banging and rubbing his forehead till his hair dreads then breaks off. Mad fingering. Kicking feet. More screaming. Devilish grimace. Grinding teeth again. Crazy. What the F is going on? Can’t figure it out. Is this a seizure? Is it drug withdrawal or drug toxicity? Is he trying to tell me something? If so, what? Is he hallucinating? Keeps wanting to be picked up. About at the end of my rope.

Today. Slept pretty well. Awoke twice to drink some water. Back to sleep easy. Thumb in mouth. Got up at five. Played happily in crib. In bed with us. Huge smiles for mama and daddy. Lots of laughing. Crazy good hugs. No eye poking at all. No fingering. Loving our kisses. Some more huge smiles. Wonderful belly-laughs and giggles. Getting stronger. More hugs. Happy at breakfast. Loving blackberries. Good work using spoon. Warm, rosy complexion. Giggles for daddy. Today is a new day.

second skin

They say—or at least they used to—that the cells of our body regenerate every seven years. I think it must be true.

During the first few years of Calvin’s life grief, pain and anger seeped deep into my pores, or perhaps originated in the darkest recesses of my soul and flowed out of me—I’m not really sure which. At some point on most days I found myself immersed in a viscous, penetrating sorrow, a black shroud of despair, which thankfully—and mostly because of Calvin and my husband Michael—shards of hopeful light pierced through often, allowing me to breath.

Seven long years later I believe I have come into my second skin, like a snake that slowly struggles out of its dry, brittle hide—faded, weathered and abraded—and emerges shining and steely. This transformation has taken some time, each cell of my body owning a memory of its stress and misery, and no doubt leaving a lasting impression on the core of newer, stronger cells. In this way I will never forget my suffering and loss. I will never forget the obstacles I have conquered. I will never forget knowing anguish. Somehow, it is comforting to me not to have lost those memories and moonless feelings, and to know how to access them when I feel the need—to reach deep down inside myself to that warm, dark hollow, curl up and surrender to my sorrow.

This second skin of mine is more resilient. It affords my emotional state increased latitude without breaking under the weight of worry and stress over Calvin’s well being. My second skin shines brilliantly and reflects the loving faces and gestures of my husband, of Calvin, my family, my second family, my former counselor and my friends. And I cannot forget to acknowledge the good ole reliable ticking of the clock, which has slowly and deliberately chipped off seven years of a tired and weary skin and allowed me to begin anew.

photo by Michael Kolster

barefoot angel

Yesterday while—inside my head—I was quietly celebrating Calivn’s seventh birthday, my closest childhood friend’s six-year-old niece was undergoing brain surgery three thousand miles away.

In November, when she was just five, someone found the beautiful flaxen-haired child unconscious on the floor of her school’s bathroom. It appeared she had had a seizure. My friend told me that her niece used to have febrile seizures when she was little though she hadn’t had any in two years. But somehow the seizures had returned.

An MRI revealed a cerebral arteriovenous malformation (AVM) on the right side of her brain. AVMs can cause deficit, pain or epilepsy. To control her seizures she began taking an antiepileptic drug—one of the same ones Calvin was on—while her parent’s scheduled her for surgery to remove the malformation from her brain.

I’ve never met the little girl but I’ve seen pictures. She's a barefoot angel. In my favorite photo she stands—hands clasped—wearing a feathery, cherry-red ruffled skirt, a bright white shirt and a matching red cowboy hat trimmed in white and fastened snugly under her chin—her long, wavy, golden hair tumbling down her back.

Last night in bed, I closed my eyes tightly, holding this sweet candy cane image of her in my head. I will carry it with me all day today while she goes through her second brain surgery. And tonight I will dream of her running through a meadow—a thin stalk of grass in her small fist—downy dandelion tufts suspended like jellyfish in the summer breeze and parting for her perfectly awkward six-year-old cartwheels.

birthday boy

There is no doubt that Calvin has changed our lives. He has taught us to be better people, to appreciate simple pleasures and to take nothing for granted. His love is endless and completely unconditional. Today, though Calvin is the birthday boy, he is the one who is giving gifts to others—to those of us who love him and to many whom he has never met.

Calvin's Wish

If Calvin could make a wish he might ask for
a shiny new fire truck,
a snazzy Lego set,
a colorful plastic Big Wheel,
or perhaps to stop having seizures.

Calvin might wish for
a bumpy pony ride,
a cuddly puppy to lick his face,
a goldfish in a bowl,
or to run barefoot in the grass with his mama.

If Calvin could make a wish he might ask for
the colorful prize in a bubble gum machine,
a McDonald's happy meal,
a treat from the ice cream man,
or not to have to take medicine anymore.

Calvin might wish for
a brilliant comic book,
a box of crayons,
a cool pair of sneakers,
or maybe some friends to play with.

If Calvin could make a wish he might ask for
popcorn at the movies,
a trip to Disney Land,
a newfangled video game,
or to be able to eat graham crackers and cheese puffs again.

Calvin might wish for
a gift from the Tooth Fairy,
Santa's next visit,
a baseball and mitt,
or to fly a kite on the beach with his dad.

if Calvin could make a wish I don't think he'd ask for
more loving parents,
more devoted grandparents,
more caring nurses,
more compassionate supporters,
but perhaps just the chance to say "thank you" and "I love you."

My birthday wish for Calvin is to give him the gift of hope for a cure for his epilepsy and for all of you, today, to consider donating what you can to epilepsy research. 

Go to:

http://www.calvinscure.com

don’t mess with this chick

I always wear a backpack, messenger bag or a satchel with a long strap over my head and shoulder. I never carry a purse. At first it was merely my preference, but now I make a habit of it.

One day, back when I was living in San Francisco, I was walking from work to the bus. I strolled along the Embarcadero, then veered onto a grassy path, which meandered through an office complex. Suddenly, a man rushed up behind me—I felt the air he pushed—and he swiftly hoisted my black knit skirt high above my waist.

Incredulous, I stopped dead in my tracks, my black leather zip-up high-heeled boots planted firmly on the ground, feet slightly apart, my wide backpack strap secured diagonally across my chest. I calmly asked him his name and, as if I had approached him in a smokey bar, he told me with a sleazy air of confidence. Then I asked to see his driver’s license, which seemed to snap him out of his illusion and into the reality of his crime. Simultaneously, I noticed a group of onlookers standing behind a large, full-length window a few feet away. The guy bolted so I lunged at him and, with one hand, snagged a belt loop on his navy corduroys and wrung the back of his shirt collar with the other. “Call 911!” I screamed at the bystanders, certain they could hear me through the thick glass.

The culprit freed himself, tearing his shirt collar and ripping off the belt loop, then he sailed down the path. I darted after him. As the villain approached the main street spectators started emerging from their offices. He turned the corner—out of my sight for a second—but was blocked by a young man carrying a portfolio. The crook began to act like nothing had happened, but all the while I was yelling the details of his offense to an attentive crowd that had formed. I positioned myself in front of him on the sidewalk to prevent his escape. As he continued to deny his crime a woman appeared and exclaimed, “he did it! I saw the whole thing and the police are on their way!” At that moment he tried to get past me, but I pushed his shoulders and shoved his chest hard, pinning him between the cars and another man who had stepped in to assist me. I continued to preach to the crowd, “if this guy gets away with this he’s gonna to do worse things” and then, to my assailant, “don’t mess with this chick.” He made a final run for it just as the cops peeled around the corner and cuffed him. Fortunately, I had been hands-free because of my backpack, but I couldn't have overcome him without the help of a lot of great people—all strangers to me, and yet my friends.

I never met with another nasty foe until almost five years ago. That was when Calvin was diagnosed with epilepsy when he was just two years old. At first, I had no idea what we were up against, but I soon learned that epilepsy would become my greatest adversary, and Calvin's too.

Epilepsy affects three million Americans—one in one hundred people—more than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined.

Epilepsy does not discriminate. More Americans live with it—and die each year from it—than breast cancer, and many of them are our children. The mortality rate among people with epilepsy is two to three times higher than the general population and the risk of sudden death is twenty-four times greater.

Epilepsy affects three times as many people as does Parkinson's disease, yet Parkinson's and other neurological disorders enjoy up to four times the funding from pharmaceutical companies, up to three times the funding from the government and up to ten times the funding from private sources. And only a quarter of epilepsy funding goes toward finding a cure.

Before Calvin had epilepsy I thought it was a benign disorder for which you simply take a pill and everything is okay. Well, it's not. Forty percent of people with epilepsy have uncontrolled seizures, like Calvin, even though they take strong medications. And the people who enjoy seizure control from taking their medicine still have to deal with the side effects because the medicine is only a bandage—a mask.

When it comes to finding a cure for epilepsy, this most violent offender, I cannot do it alone, not even in those kick-ass boots. Calvin and I need the help of others, of you—our friends—and of strangers. That's why I am writing the blog. It is why I am asking you to donate to epilepsy research. You will be nothing less than a superhero—Calvin’s superhero—and you’ll be bringing us one step closer to a cure for epilepsy, our only hope for arresting this hateful disorder.

http://www.calvinscure.com

One of Calvin's superheros

party time

I’ve always loved putting on a good party. When I was just fourteen I began organizing holiday gatherings for my siblings who were home for college break. Sitting slouched on a spinning vinyl bar stool, a mustard-yellow telephone in the crook of my neck, I spent hours calling over a hundred friends—doodling all the while on our phone book until it was plastered with inky black patterns. “Bring some beer and something to eat,” I’d request, and they'd oblige. My parents had as much fun as anyone at these gatherings—the steady stream of our companions coming and going meant a constant supply of kids for my dad to bait and tease.

In San Francisco my roommates and I continued my tradition of a winter party to celebrate, as much as anything, the lengthening of the days. Warm and inviting, we adorned our spacious flat with candles, strings of tiny white lights and brilliant fires crackling beneath the marble hearths. Savory aromas wafted from the kitchen’s roast turkey, honey-glazed ham and buttery homemade cookies. Sharply dressed party goers quickly filled the apartment to the brim, each bearing a bottle of wine or champagne. In the back corner of the kitchen, a table chock full of homemade guacamole and hummus, chips and pita, veggies, dips, fresh fruit, cheese and crackers, nuts and chocolates served the ravenous mob. Out on the back deck chilly merrymakers crowded around a keg—warming their hands with their breath—and spilled down the steps into the garden. In one room dancers writhed and jumped to funky music and in another guests lounged shoeless amongst fluffy pillows and a Flokati rug.

Some of the unfamiliar faces I met during those evenings perhaps had seen and heard the revelry from the cold sidewalk below, through the sweating bay window, and had invited themselves in to partake of the festivities. Inevitably, in the wee hours of the morning, a handful of bobble-headed guests lingered by the glowing embers. As I brushed my teeth I’d bid them goodnight, encouraging them to “party on” if they so desired, closing myself in behind two large pocket-doors.

And so, today, I find myself throwing another party, but this time it is to mark my son Calvin’s seventh spin around the sun and to acknowledge, and support, his constant battle with epilepsy. Not unlike all of my past festivities, however, it is an opportunity to surround ourselves with many of those whom we love. It is a chance to break up the long, cold, winter days by raising a glass or two of wine. It’s an occasion to meet new friends, to eat delicious food, to delight, and perhaps dance, to music. But most of all we come together to celebrate life, and for me now, it's a time to celebrate Calvin’s story. 

Please donate to epilepsy research in honor of Calvin's seventh spin around the sun at:

http://www.calvinscure.com

dear calvin

Dear Calvin,

You’re getting to be such a big boy. It is wonderful to see you grow and learn. Mostly, though, it’s indescribable to see you smiling again and engaging with your world. I wish you knew how much joy you bring to me when I pick you up out of your crib and see that big smile come across your face—the one where you are anticipating snuggling in the warm bed with mama and daddy and getting lots of hugs and kisses.

I wish you could know how proud I am of you for all the things you are learning how to do, because I know it has not been easy. It is so much fun to see you scoot down the stairs, one by one. You are so good at it now, and so fast! You really are doing an amazing job climbing into the tub—almost all by yourself—holding on so well before you drop yourself in with a splash. What an accomplishment. And now that you are putting your arms through the holes of your shirt, practically by yourself, I can hardly believe my eyes. You astound me.

Calvin, I wish I could take away all of your seizures with the blink of an eye. I wish I could throw away all of your medicines. I wish I could make all of your headaches and dizziness and weakness go away. I wish all this could change so that your body and mind could feel free and clear, bright and brilliant. I know you would be capable of doing so many things that the seizures and medicine prohibit you from doing now. I am so sorry for the pains you must endure. It’s all so utterly senseless.

I know that you understand some of what I say to you—that is clear. But I hope you understand the most important thing of all—which is that I love you beyond measure and I would do anything for you. Anything.

Calvin, you are my hero and you make me want to be a better person every day. I know in my heart that you know me and love me. That is an amazing gift. Thank you.

Love,
Mama

gamma globulin

Seven years ago this week Michael and I had just returned home from Beth Israel Deaconess and Children’s Hospitals in Boston. At 33 weeks gestation, I had spent the day undergoing a tiresome series of tests and screenings, including a fetal MRI. The radiologists and neurologists believed they saw in the magnetic images evidence of slight hemorrhaging in Calvin’s brain. They surmised a clot had created a backup of cerebral spinal fluid causing his lateral ventricles to enlarge, thus damaging a significant amount of his white matter. The theory was that a platelet incompatibility between Michael and me might have induced the bleeding. Their solution was to give me an IVIG–Intravenous Gamma Globulin—a plasma protein blood product described to me as an anti-antibody-antibody. In other words, the IVIG was meant to kill off my antibodies, which appeared to be killing off Calvin’s platelets. At least that was the idea.

The procedure, which took place in a sterile florescent-lit room at five o’clock in the evening, and which was supposed to take only two or three hours, took nine. I laid in bed while the nurse administered fluid from several consecutive clear plastic IV bags, drop by drop, into the vein in my arm. The contents of the bags were painstakingly concocted in the blood bank in the hospital's bowels, no doubt by white-jacketed technicians wearing latex gloves. What was nine hours seemed more like an eternity, staring at mostly blank walls punctuated with shining fixtures, black hoses and plastic wrapped instruments. The minutes inched by as we sat wearily, the desolation broken, occasionally, by squeaks and shuffles of rubber clogs on the waxed linoleum floor. At 2:30 a.m. we finally left the hospital, completely fatigued, and drove on deserted streets to the nearby home of a kind physician—a friend of my sister’s. She met us at the door and showed us quietly downstairs to a dimly lit, cozy basement room. After a solid, albeit brief, sleep we awoke early and embarked on our three hour drive home to Maine.

In an effort to avoid further complications in utero, an early cesarean had been scheduled, in Boston, with scores of specialists and some blood bank donor platelets for Calvin if he needed them. But a few days after returning home from Boston, not long after the IVIG, in the middle of the night my water broke. We were at week 34, in the heart of an ice storm and Calvin had started making his way into the world.

Please donate this month to epilepsy research for a cure, on behalf of Calvin, at:

http://www.calvinscure.com

nutty, crazy, wacko

I remember a time when I had to give Calvin medicine twenty-two times every day. Some of his meds he took only once daily, others twice, some were administered three times a day and another I gave him four times each day. Nutty.

Clear pink and milky white liquid medicines were—and still are—shaken, syringed up, given straight or diluted in water in his baby bottle. Capsules needed to be opened and their white powdery contents sprinkled into Calvin’s yogurt. For a while I had to give him just half of a capsule, which entailed pouring some of the chemical from one tiny half of the open gelatin capsule into the other and eyeball it through the translucent gel until both halves appeared to hold equal amounts. Sometimes the contents would dump out all at once like ice cubes do when slurping the last few drops of beverage out of a cup. Crazy.

Pills are always easier to handle than capsules, though not when I’ve had to cut them into quarters, or even eighths, and you can forget about being precise when the damn things are oval. I’ve made a handy stencil on the back of an old, flaky mirror and cut the pills on the glass using a razor blade. Dubious.

At some point, after his epilepsy diagnosis and after initiating the Ketogenic diet, Calvin was taking upwards of eight medicines all with different dosing protocol. I had to devise a check-off chart so I could account for each drug that I had administered lest I forget which ones he had gotten and which ones he hadn’t. The consequences of forgetting a seizure medicine, or double-dosing it, are equally hairy, though thankfully that hasn't happened since a neurologist double-dosed Calvin's first antiepileptic drug while in the hospital; we caught the mistake after the first dose but he never owned up to it. Wacko.

Now, if we could just discover a cure we could all do away with the nutty, crazy, wacko, dubious world of chemical drugs and their side effects, not to mention the frigging (F-bombing) seizures.

Please donate to epilepsy research this month and help bring us one step closer to a cure at:

http://www.calvinscure.com

pierced hearts

My Californian friend called me not too long ago. She had just returned from an extended stay in Tucson with her longtime friend, Roxanna, whose nine-year-old daughter, Christina-Taylor Green, was murdered at Congresswoman Gabrielle Giffords’ meet-and-greet. Though I knew she and Roxanna were close I was not aware that Christina was her godchild.

She spoke emotionally and at length about the events of the harrowing week, about staying in Roxanna’s home, attending Christina’s wake and about how, at the memorial, one unsavory visitor who had spooked her, had been swiftly removed by security.

She told me that Christina died from a single bullet that had pierced her heart. She went on to say that one of Christina’s organs was donated to save another child’s life, and her corneas helped the sight of two other children.

During the hour we spoke on the phone, she described how her daughter and Christina had been like peas and carrots—closer than cousins. At the service, my friend and her daughter approached Christina’s open red oak casket to say their final goodbyes. For hours her daughter had been tightly hugging Christina’s favorite stuffed animal, so loved that its nose had been worn off. She told her daughter that the plush toy needed to be with Christina. So the girl, with tears in her eyes, laid the it beside Christina’s body, so beautiful and peaceful in repose.

Later, while at a grocer, my friend sparked up a conversation with a rugged, boot and leather-clad man adorned with tattoos. Together they reflected on the recent days’ events and she asked him if he had attended the memorial. He said yes, and that he had organized hundreds of fellow motorcyclists, from rival bike gangs, to harmoniously converge in Tucson in honor of the massacre’s victims.

Near the end of our telephone conversation my friend described her awe of the immense togetherness and goodness that had come out of the tragic events. To her, it was proof of the existence of God and I understood her faith. I winced, however, when she related telling Roxanna that this was, perhaps, Christina’s destiny. At hearing these words I couldn’t help but picture the beautiful, happy little girl being violently and senselessly gunned down, lying flat and lifeless on the hot pavement. Was this all part of some grand design to bring about goodness and change in the world? I bristled at the thought remembering the familiar stab and sting I feel when people tell me that Calvin—thus his inherent disabilities and rampant seizure disorder—“happened for a reason.” Silently, I hoped that Roxanna somehow found consolation in our friend’s well-intended and honest words, though I can only imagine Roxanna's own heart was pierced the day her precious child was so brutally killed.

The events that transpired after the shooting were indeed most powerful and wondrous. Strangers and adversaries melded fluidly to console and uplift each other. Amazing, positive phenomena were born of chaos, blood and catastrophe. This often hidden foundation of ours, of empathy and compassion for strangers, surged into an outpouring of concern and selflessness and—if only for a moment—we forgot what so often divides us. If only we could figure out a way to make it stick.

Please kindly donate this month to epilepsy research at:

http://www.calvinscure.com