reality button: "on"

Sometimes I feel at the end of my frazzled rope struggling to analyze the relationship between Calvin’s seizure drugs, his dietary protocol, the drugs’ side effects, shifts in his seizure patterns, changes in his appetite and behavior. At times the worry and effort to keep all of these details in balance leaves little space in my mind for remembering things like calling my mother, making time for friends, relaxing, paying attention to the dog and to my husband and to various other tasks at hand. Things inevitably slip through the cracks and I find myself bereft of energy, hope and enthusiasm.

But then reality kicks me in the teeth, rains on my pity party (thankfully) and, by slapping me silly, resets my reality button back to where it should be: in the “on” position.

On the news this morning I heard the story of a mother who had tried to rescue her sons, aged two and four, from their flooded car on Staten Island. After she’d gotten them out of their car seats, the water having risen above their heads, a large wave had swept the two little boys away. Later, in the wake of her attempt to enlist others, who spurned her cries for help in finding them, the toddlers’ lifeless bodies were found.

After hearing the story I said to my husband, as I nursed a cup of hot coffee, “We’re so lucky ... we are warm and dry and fed.” And with a sorrowful face and an ache in my heart I realized that Michael and I and our eight-year-old boy Calvin, who is retarded and non-verbal, cannot walk without assistance, wears diapers, must be spoon-fed, is haunted by seizures and debilitated by powerful anticonvulsant drugs, are—in many ways—lucky. And I think of that grieving mother and the scores of others who live in harms way, who've lost their homes, who don’t have enough to eat, who shiver in the dark, whose precious loved ones have died, and I’m humbled by the ridiculous reality of our fortune.

Reality button: “on.” Now ... how can I help?

photo by Mark Lennihan / AP

a single voice

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

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

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

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

So, take that one, simple step that you might have considered time and again but never did, which is to forward the link to Calvin's Story via email, click that Twitter or Facebook button below this post, or click the Share button under the Calvin’s Story link on your Facebook page. Perhaps include a few words about why you're sharing it. It’s that easy. Those who have done so already have sparked a critical mass by doubling, tripling, even quadrupling readership and, thus, epilepsy awareness. Doing so means the world to me, because—like many of you might imagine—Calvin does too.

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

Originally published 01.11.11.

photo by Michael Kolster

stone cold silent

Halloween eve. I could tell by the tone of her voice that something was wrong. “Christy,” nurse Bebe said, “Calvin is spacing out way too long.” I dropped the knife into the kitchen sink and sped around the corner to the next room. Calvin was standing frozen like a statue in front of Bebe gazing blankly into nothingness. Even in the dim lamplight, the black night masking each window, his skin shed a ghostly glow. I knelt down and put my face near his, called his name, “Calvin.” No response. He was having a seizure. I picked his stiff little body up and laid him sideways on the couch. I stroked his hair, kissed his neck and called his name. For a moment, he tried to sit up, wrapped his arms around my neck and, with a look of foreboding as if to say mama make it stop, he kissed my nose. I hoped he might come out of it, but I was wrong. So I laid his rigid body back down and we watched him there, stone cold silent, and though his nurse counted off the minutes, time stood still.

Calvin doesn’t breathe during the first part of his seizures, his skin white as marble, his lips cold and grey. Compared to others, this one was slightly different—his body nearly motionless save a hint of silent trembling. At two or three minutes a few raspy gulps drew air into his lungs, the precious oxygen painting his lips pale rose by degrees. But he wasn’t with us, still trapped within the seizure’s opaque veil. Closing in on five minutes Calvin finally began moving and whimpering in a way that signals it is over, only this time he didn’t cry. We propped him up onto a pillow where we scrambled to give him his seizure meds before he fell asleep. In a daze, he obliged. What a good boy, my sweet, sweet Calvin.

It had only been seventeen days since his last seizure, which seems to be a new normal, a far cry from the forty-plus—even seventy-eight—day stints he enjoyed throughout the spring and summer. And we haven’t a clue as to why his body and brain have lost that improved threshold. It's maddening.

After we put Calvin to bed I felt myself sweating. I sat on the couch where we laid him during the seizure. Nausea washed over my gut and I felt a slight headache kicking in. With each passing seizure, each passing month, year, new medication, new dietary treatment, I feel hope slipping through my fingers like sand. We just can’t seem to get a foothold. No matter how hard we dig in the seizure-control keeps slipping away. It appears more and more likely as time goes by that—without a cure for epilepsy—Calvin will be sentenced to a life of repeated seizures, drugs and side effects that rob him of the chance to reach his full potential, which is most dispiriting to say the least.

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

But thankfully, Calvin seems to bounce back from these seizures like the little trooper that he is. He’s in school today wearing jeans adorned with glitter and spidery purple-black-orange Halloween patches and a skinny jack-o’-lantern shirt. Tonight, just like every Halloween, when the kids come knocking on my door asking for treats, Calvin will be in his pajamas ready for bed and I'll be the sorry witch that greets them with a bowl full of candy and, with any luck, a chocolatey grin on my face.

Halloween 2009

trees in your orchard

The trees in your orchard . . . give that they may live, for to withhold is to perish.
 

—Kahlil Gibran

Grandmas Apple Tree by Ginette Callaway

don't go back

There are some people in this world who are pure souls. My sweet little retarded boy Calvin is one of them. He affirms it with a sea of unconditional love, his lack of desire to hurt or conquer, his impartiality, and his indifference to material things—all qualities I believe can heal the world. At the same time he expresses a most admirable (though sometimes irksome), determination. And he is a boy who has a penchant to do what is right even when it is difficult.

Of late, Calvin has moved me to ponder this country, which our family is fortunate enough to call home. I feel grateful for the day that this nation of immigrants was founded. It was a landmark moment that represented many freedoms, a time that underscored the escape from religious persecution, the iron hand of abandoned monarchies and the shackles of caste societies. But this utopian birth of a nation had been bloodied by its ruthless slaughter of our indigenous people and the abominable institution of slavery that reigned for years in the name of oppression and profit, even in our forefather’s homes. It was a dark time when poor men, women and blacks were barred from the right to vote or own property, a time when good medical care and a decent education were reserved for the privileged few.

But thanks to the courage, suffering and tenacity of champions like Susan B. Anthony and Frederick Douglass, slavery was eventually abolished and blacks and women won their right to vote. The civil rights movement in this country worked to end legal discrimination and segregation, and the sexual revolution of the sixties and seventies promoted—among other things—birth control, thus improving the lives of millions of women and families. We have evolved into a country in which our veterans are once again revered, men and women of different races and people with epilepsy can marry, and our disabled people have shed the weight of shame, where now only the ignorant few cast their ridicule and scornful glares.

I reflect on our history and marvel at how far we have come despite so much bloodshed, subjugation, cruelty, injustice, and suppression. We have reached a better place. But there is so much more to do, so many who still stand in the cold shadow of inequality, pressed under the thumb of those who would deny them the same freedoms that they themselves—who profess to promote liberty—enjoy. And there are those who would take away the precious freedoms and advances fought so hard to attain, and who would gladly cast us aside like a bit of trash, or climb on our backs just to get to the top, never once stepping into our shoes.

And so I look back to see where we have come from, and to learn. But more so, I look forward to a society in which everyone is treated equally—for we were born as equals—one in which each of us is free to enjoy life, liberty and the pursuit of happiness, where condescending slurs, misogynous attitudes and biased policies against women and girls are eradicated, where everyone can marry the one they love, where our criminal justice system isn’t an ugly mirror of blatant racism, where the gap between the haves and the have-nots gets narrower not wider, where corporations are not considered people (people bleed), where the separation of church and state still abides, where everyone who wants to go to college can do so without getting sunk, where sick little kids like my Calvin are not at risk of losing or being denied health insurance. I dream of a homeland in which the value of justice and inclusiveness are a powerful and noble example to the world, not one that would promote bigotry, exclusivity and the accumulation of massive wealth and brute power for the privileged few over opportunity, well-being and equality for every last one of its people.

And so, with the pure spirit of my son Calvin in mind, I think to myself out loud: lead by example, move forward, embrace progress, keep on truckin’, stay the course. And be reminded to keep looking back ... but just don’t go there.

Susan Brownell Anthony

Frederick Douglass

Calvin James Kolster

lives matter

The idea that some lives matter less is the root of all that's wrong with the world.

―Tracy Kidder, from Mountains beyond Mountains: The Quest of Dr. Paul Farmer, a Man Who Would Cure the World

Depression era girl, Photographer unknown

heartbreak hotels

Every time I visit Calvin’s grade school it’s like checking into a heartbreak hotel. I walk the long corridors, my boots scuffing on buffed linoleum tiles as little munchkins pass me by swift and stealthy as fairies. This week the hallways are plastered with large cut-and-glue portraits of Native Americans carved from thick sheets of paper. The images create a melange of brown, russet and tan hues reminiscent of desert, wild horses, prairie and suede. I look closer to see feathers sprouting from headdresses, dramatic face paint and cut-fringe garments. These scores of native faces stare silently as I make my way to Calvin’s life skills class located near the end of what feels like an indigenous longhouse.

Halfway down the empty hall a little girl about seven or eight brushes a soft blond curl from her forehead as our eyes meet. She smiles up at me forming a dimple in her cheek. I am reminded of the daughter I might have had, the one whose eyes I could look into and they’d look back at me—something my son rarely does. I feel her sweet warm breeze just as a hollow pit gnaws into my gut. Again, I regard the students’ work on the walls, remembering the artist I had been in school and thinking, if things hadn’t gone so wrong, one of these portraits would’ve been Calvin’s.

Once in the life skills room I must step around a thin girl dressed in purple lying prone on the floor. She has bluish fingers. I see her dusky hands and mouth, the flickering of her eyes, and wonder if she’s having some sort of seizure. Another boy is at the sink cupping his hands under a tap of running water and crying. It breaks my heart—he can’t tell us why. They say it’s because he isn’t getting his way, but it breaks my heart nonetheless, and I feel the urge to rescue him. An older boy rests supine on a mat receiving physical therapy from his aide: a handsome young man who is patient, kind and strong. None of these children can speak. Then Calvin emerges from the bathroom, his aide holding his harness and hand. “Hi Calvin! It’s Mama,” I say, kneeling as I wrap my arms around his twiggy waist. He smiles and returns my embrace with fervor, gives me a slobbery, open-mouthed kiss on the nose. I think he knows it’s me.

I visit with Calvin’s aide for a spell, give her the supplements I’d forgotten to pack in his lunch. Then I head down the long corridor again, passing several kids reading books aloud as they go. Calvin can barely walk and can’t read, much less do them both at the same time. I feel a satisfying warmth wash over me as I swim amongst these most extraordinary, ordinary kids. Then I feel the aching pit again, sinking my soul. Later, at the pediatrician’s office, I feel it again as I listen to the whispers of three children and their mother. They're excitedly remarking on the colorful fish in the waiting room tank that I wonder if Calvin has ever noticed, even though I've shown him. I watch a bespectacled mother and son quietly reading books side by side. And I feel it again when I sit alone in the empty room waiting for Calvin’s doctor to come and discuss his weight loss, his seizure drugs, his paltry appetite, his urinalysis, his blood draw, his seizures, his behavior, his well-being, my sleep deprivation, my stress.

And I realize that wherever I go, I check into a heartbreak hotel, because no matter if it’s a school or a doctor’s office or the grocer or the sidewalk right outside my window, I see constant reminders of how wonderful children are and how, even with a boy as loving as Calvin, I’ll never be quite so lucky.

photo by Michael Kolster