no way to live

As I watched this poignant eight-minute documentary film of siblings and children of victims speaking passionately about their experiences living with a loved one who has epilepsy, I broke down.

I realize that on any given day we have to stay strong, have to accept what is the unacceptable, have to live amidst fear, pain, sorrow and regret. It's really no way to live, but until we find a cure, it is the only way we know how. Watch and be enlightened.

In honor of epilepsy awareness month, please share this story with others. Help bring us one step closer to a cure.

click here to find out more about CURE

milestones

I often remember back to the day Calvin was born, six weeks too early and by emergency cesarean. The doctors in the neonatal intensive care unit told us he had very poor muscle tone and hadn’t been able to adequately breath on his own, needed to be put on a respirator. Calvin couldn’t keep his heart rate down or his body temperature up. They told us his ears seemed low, his pinkies curved in and his eyes were too far apart, all signs that he might be suffering some serious genetic syndrome. My mother has a wide nose bridge, I’d tell myself, he’s a preemie and has shark eyes anyhow. What do they know?

My memories drift to the first few weeks of his life when he wasn’t able to nurse, hadn’t yet developed the suck-swallow reflex and couldn’t latch on, had to be fed predominantly by a plastic tube threaded through one nostril and into his stomach. After meals he’d arch and scream with terrible gas pains and burning reflux. He was barely five pounds, hadn’t put on much weight, and was as floppy as a well-loved rag doll.

At four months of age Calvin began physical therapy, followed by occupational therapy and speech language therapy when he was just six months old. During PT we’d lay him down, his tiny arms and head supported by a neon stuffed fabric worm, an arched play-mobile suspended above him. Just within reach, and close enough for him to see with his terribly impaired vision, dangled some bright plastic rings, a green frog sprouting striped legs with feet that rattled, and a shiny round mirror, things any infant would love to bat and swing. But Calvin’s arms remained flaccid at his sides, as if gravity were a giant magnet pinning them to the floor. Peggy, his PT, had given me a complex chart of developmental milestones for a child’s first three years. I marked it with an orange highlighter and dated it in black ink whenever Calvin met any. For months the chart remained mostly blank. It still is.

The neurologist told us that Calvin was missing as much as eighty percent of his white matter, the brain’s super highway responsible for transporting messages between different parts of the brain and his body. He gave us the grim news that Calvin might never walk, might never talk.  My precious son, I sometimes thought, my only child, might never become more than a blob—a crying, floppy, useless, blind-as-a-bat blob. The image was petrifying and all too real. But never did the man mention the possibility of seizures.

Then, at the age of two, the seizures came. I'd read about them, the way they can strike anyone without a moment's notice, and especially kids with cerebral palsy, autism, developmental delay, mental retardation and preemies. First, they came slowly, infrequently, then descended like a cloud of locust in a single day—not hundreds like some children suffer—only a dozen or so, but they devoured my spirit and shook my countenance as if it were so, and landed us in the pediatric intensive care unit more often than I'd care to remember. Who knows what havoc they were wreaking on poor little Calvin's delicate brain? And as the fear and reality of the seizures consumed our world, the missed milestones—to a great extent—were forgotten, didn’t seem to matter. Our child was profoundly ill and no drug, or combination of drugs and dietary therapy, could stop them—these seizures, like freight trains burning up miles and miles of tracks in Calvin’s brain.

And while I still grieve the fact that Calvin can’t yet walk unassisted, can’t utter any words, can’t do any task without our help, those missed milestones have taken a back seat to the relentless seizures, without which Calvin wouldn’t have to ingest so many mind-altering, sedating, over-stimulating, dizzying, debilitating drugs, both of which (the seizures and the drugs) cause him to miss the milestones anyway.

In honor of epilepsy awareness month, please share this story with others. Help bring us one step closer to a cure.

outside the box

I came home Friday night with three things: a nice buzz, a simple figure drawn on a napkin and a smile on my face.

I’ve always loved going to the movies by myself, hunkering down in the dark with a bag of popcorn immersing myself in a good film and forgetting everything else. So I sat myself down for a late matinee in a squishy couch at the front of our modest single screen theater. I knew Michael, who was out of town, probably wouldn’t enjoy the period piece I'd chosen, and as it turned out I was a bit disappointed myself, underscoring the loneliness I felt missing Michael.

I’d asked Calvin's nurse to stay a little late so I could grab a bite to eat after the movie. Pulling out of the theater parking lot I felt kind of lost. So I drove around a bit before deciding to hit my friend’s new lounge back by the fire station. As I’d hoped, my buddy Bob was tending bar. It was early, so the place was awkwardly quiet, mostly empty save a casual middle-aged couple at the end of the bar drinking spirits and a woman eating dinner by herself. I was feeling a bit down, wasn’t sure if I wanted to stay.

“Got any music?” I piped. Bob asked me if I’d like some jazz. I nodded. He put on Nina Simone which reminded me of good times back in my San Francisco flat. Doug, my upstairs neighbor, played her a lot—I marveled at her unusual, sad, almost masculine, voice.

Soon I was sipping from a stream of buttery Malbec amply filled past the fat part of my glass. Then Bob delivered a sublime Caesar salad, anchovies, a basket of bread and olive oil, pepper and sea salt in tiny shallow bowls. There wasn’t much to do but eat, drink and stare at the bottles of liquor against the wall, my friend Bob having to leave the bar every few minutes to retrieve things from downstairs. In between trips he entertained me with funny stories about his stubborn twenty-two-month-old daughter.

At the end of the bar the woman was trying to solve a puzzle that her partner had outlined on a napkin. The two burst out laughing and I flashed them a smile. “What’s the challenge?” I asked. “To connect all nine dots using only four straight continuous lines,” the couple replied in unison. I jumped off my stool to go see what they meant, to study the napkin with its nine dots creating a square-shaped grid. Immediately I chirped, “it’s got to be something where the lines go beyond the dots.” He found my quick answer amusing and showed us the solution. Indeed, two of the line segments must extend outside the implied box of dots. “It’s where they got the term ‘thinking outside the box,’” he said, to which I quipped, “I usually think outside the box, which is why I never keep work with certain corporations.” We all had a very hearty chuckle.

At a quarter to seven Bob brought me the bill just as I was scrawling in pen on another napkin:

“When you have exhausted all possibilities, remember this—you haven’t.”

—Thomas Edison

I fingered the napkin across the bar to my newfound companions, “You gave me something so here’s something for you.” I shoved one arm, then the other, into my coat as they read it. We all three smiled with our little buzzes and wished each other a very good night. I folded the dotted napkin and stuffed it into my pocket. As I descended the stairs I thought, with a kid like Calvin, it's a good thing I can think outside the box. My Calvin, he's a puzzle, his seizure disorder, a maze, a constant problem to solve, like trying to put a square peg into a round hole ... but there's probably some way to do that too. And if there is, you can be sure I'll figure out how.

In honor of epilepsy awareness month, please share this story with others. Help bring us one step closer to a cure.

 

impossible kid

This kid is impossible.

He's impossibly beautiful to behold. Impossibly freakish lately and impossible to bear at times. It's impossible to know what goes on in his mind—he's nearly impossible to understand. And it's impossible for him not to simply break my heart into little pieces.

This kid is impossible. Impossible to know what he dreams, what he hears, what he sees, what he thinks. Impossible to know what he feels or to know what is hurting him. It's impossible to be sure if he really knows who I am.

This kid is impossible. His seizures are yet impossible to control and the drugs he must take for them are impossibly debilitating. The source of his misery impossible to know, his inner desires impossible to imagine—if indeed he has them at all.

Most of all it's impossible for me not to love this most amazing, impossibly adorable kid.

In honor of epilepsy awareness month, please share this story with others. Help bring us one step closer to a cure.

treading water

Teaching someone how to tread water often feels futile, and sometimes it is. It’s hard to explain to a non-swimmer how to paddle their arms and legs hard against the liquid, as if pushing off, rather than slicing through it like a hot knife in butter. If you do that you’ll just sink to the bottom and remain there forever unless there is someone to fish you out.

Every so often I paddle back through a sea of emails, a few composed from just before Calvin’s birth and continuing on from there. Some are candid notes between my family and me, others dry correspondence with neurologists, neuro-ophthalmologists, physical and occupational therapists, vision specialists, insurance personnel and still others emotional messages to and from mothers of disabled children.

I came across one I sent to my brother Scott, when Calvin was a bit over two years old and had just been diagnosed with epilepsy, in which I wrote:

calvin started drinking from his bottle by himself yesterday and today he is much improved! it is so good to see. i may have told you we have been working on that one for over a year, maybe as long as 18 months. i hope other skills will not take as long. maybe his development can snowball. i am wishful. he is also starting to catch himself from falling backwards by sitting, rather than arching into a back dive. much safer!

so much is unknown about calvin's future and potential. that is very hard for me. at this point speech looks like a long-shot, but you never know. i will try my hardest to help him achieve his very best. i learned that from you and dad.

As I perched on the toilet lid spotting Calvin while he batted the bathroom shutters—something he’s been doing since before he was two—I stared out at the crimson and gold leaves littering the lawn and thought about that email. Calvin still hasn’t learned how to fall back by sitting. The protective skill was emerging just as he changed antiepileptic drugs. On the replacement drug he lost the skill—completely. His speech seems less likely to materialize as the years tick by. He utters few consonants save some “ms” and the occasional “n.” His vocalization is no more than a stream of looping, repetitive hums, round arching “ahs,” clear “oohs” and howling screeches.

I feel like Calvin and I are both treading water in some gigantic fishbowl, with our heads tipped back just barely above the surface, pumping our legs hard against water that just keeps getting away from us—slips through our fingers. We are trying in vain to keep from going under but, like in a miserable dream of quicksand, never making any progress. And though we may be able to tread water forever, it seems we never reach a state of buoyancy where we can gain enough clearance to churn our limbs and propel ourselves away from the mire. We’re caught in an eddy, an endless, swirling, dizzying vortex of missed opportunities, lost skills, stupefying drugs, vicious seizures, dim futures, and constant drudgery. Where every spin of the hour hand is the same as the one before, only that the hand gets bigger, ticking apathetically second by second, nothing changing but the dismal light on its beautiful face.

At the same time, however, Calvin is my little buoy, my life preserver, the one who teaches me to tread water with great proficiency instead of sinking like a stone.

In honor of epilepsy awareness month please share Calvin's Story. Help bring us one step closer to a cure.

photo by Michael Kolster

if I can stop one heart from breaking

If I can stop one heart from breaking,
I shall not live in vain;
If I can ease one life the aching,
Or cool one pain,
Or help one fainting robin
Unto his nest again,
I shall not live in vain.

—Emily Dickinson

photo by Michael Kolster

grace

A new friend, Emily, whom I’ve never met in person, has an eighteen-month old son named Ronan who was diagnosed with the regressive, terminal disease, Tay-Sachs, when he was just nine months old. From what she’s written, it seems he likely hasn’t got long to live. I think of her and Ronan daily, sometimes hourly, and check in on Facebook and her blog Little Seal, to steal glimpses of her beautiful boy and to immerse myself in the poignant words she writes about life with her precious son.

I sometimes read what others write in response to her blog posts. Most entries are compassionate and understanding, often written by parents of ill children. One reader posted this comment:

Jeremiah 29:11

“For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.”

Not to harm you? I think. I bristle at the words, the false image they conjure in my mind while contemplating my own son Calvin’s tragic health and developmental difficulties. I wonder if these words can possibly soothe her or whether they simply cut her to the bone—like they often do to me—grind salt into a gaping wound that she and her boy have inexplicably sustained. That’s how I still feel sometimes when well-wishers ignorantly toss their belief systems in my face—like a bitter pie—thinking somehow they know better than I the cause and/or destiny of my sick child, thinking their words will serve to make me feel better. The only sense I can make of comments like that—which I know are meant to console—is that they mostly serve to comfort the individual offering them, in an effort to make some sense of the incomprehensible tragedy of a sick and dying child. I'm not saying that the intention is wrong, but perhaps better kept to one's self.

When I tell people about Calvin and our struggles, about life's uncertainties raising a child whose brain isn’t complete and who suffers repeated seizures for which he must ingest copious drugs that have yet to succeed at stopping them, some tell me it's god's will and others tell me that I am brave.

Brave? No. Scared shitless? Yes. At times literally shaking in my boots. Bravery has little to do with being the mother of a chronically ill child, who at times seems to live on a thread of existence. We just do what we do, move through one moment to the next hoping that will make the future seem less daunting, less all-consuming, less suffocating, less hopeless. What else can we do but indefatigably love and care for and cherish our children as if there is no tomorrow—because maybe there won't be? It’s not called bravery; it’s called motherhood. And yes, it's likely there are a select few who'd abandon the challenge of caring for kids like ours, abandon the grief, the strife—their children—but perhaps not because they aren't brave but because they aren't strong. They aren't Dragon Moms, to use the term Emily so effectively coined, the term that I think perfectly describes the way I often feel.

When I read Emily’s words and view the muted, acid-tinted, dreamlike photographs of her son, what I see is not a brave woman but one with the grace of ages. If I let my mind wander she appears as a barefoot nymph with blushing skin and shining rosegold locks, her body loosely draped in a simple gossamer gown, Ronan gently cradled in her arms—a pure embodiment of grace. I see her loving embrace of Ronan—the way she delicately supports her son’s head with slender fingers just at the back of his little bird neck, like I used to do with Calvin. I see grace in the way her gaze seems to linger on him as if it would never end. I see grace in her reply to a stranger’s ignorant, probing questions about her dying child. Hell, I know I'd even see grace in her bitterness, her bark and her bite, her firebreathing struggle, in her grief, sorrow, despair, anger, self-pity. Because grace is honest and true, grace is unapologetic, grace cannot be put on.

And so we, mothers of these innocents who suffer, move forward one step at a time, perhaps gracefully, but only hoping to be brave.

In honor of epilepsy awareness month please share Calvin's Story. Help bring us one step close to a cure.

Ronan