glowing

This morning, feeling mostly rested from last night's soaking rain, I woke to see the sun's rays reflecting off of a yellow maple onto a wet cedar deck. Everything nearby—the driveway matted with leaves, the lichen-encrusted fence, the garage, the dawn sky—glowed golden. When I got Calvin downstairs I was greeted with the good news that so many women had won their hard-fought races in yesterday's election—White women, Black women, Latina women, Native American women, Muslim women, gay women, republican and democratic women—and that democrats had taken the House. I felt myself glowing.

After a cold, wet, four-day weekend spent indoors with a sick and seizing child, I stepped outside with Nellie welcoming warm wind and sun. Under a sky nearly as clear and blue as the ones in the West, I mused further on the outcome of the election, on a congress finally beginning to reflect more people like me—women—as well as one beginning to mirror the rest of America's growing diversity. I felt hopeful.

Later, when I sat down at my laptop, I came across a photo my sister-in-law had taken of her eighteen-year-old son, Ben, who had just voted in his first election. In the photo he was providing his family with up-to-the-minute election-night results, the light from his phone illuminating the American flag emblazoned on his chest. And although Ben, who lives in Florida, may not be happy with most of the state's results, I see in this photo the afterglow of what was in so many ways a promising election. I was proud to see his civic engagement at such a young age, while lamenting too many so-called grownups who chose not to vote.

It seems in great part that Americans voted for much of what I had hoped for in my last blog post: love, truth, honesty, decency, justice, equality, brotherhood, sisterhood, unity, wisdom, humility, empathy, charity, diversity. Now, I hope those elected can make policy so that not one American goes without affordable healthcare, not one person is denied their human and civil rights, not one person is disenfranchised.

I was also heartened to see that another state, Missouri, voted to allow the use of medicinal cannabis. Perhaps our new congress will legalize cannabis so we can board a plane with Calvin again. Speaking of which, though Calvin had a horrible October full of seizures, and a poor start to November, I'm still hopeful that the Palmetto Harmony CBD oil will help quell them when we find the right dose.

In the afternoon, I took Nellie out for another walk before Calvin came home from school. At the fields I saw a college student—tall, handsome, thick dark curly hair, light brown skin—taking a photograph with a good old-fashioned 35 mm camera. I waved him over knowing he was probably one of my husband's photography students. I introduced myself by name and as Michael's wife. Shaking my hand, he told me his name—Nate—then went on to explain that he was redoing the first assignment, noting that Michael's class is his favorite at Bowdoin, so he wants to put in extra time. When I asked what the assignment was he said, "light," motioning with an extended arm to the sky at my back. I turned to see that cumulus clouds had moved in above us and at the horizon, their puffy edges skirted in blinding white—silver linings—from the sun passing behind them. Along with everything else today, the sky was glowing, which I took to be a good and welcome omen.

Photo by Lisa Kolster

on voting

vote for love. vote for truth. vote for honesty and decency. vote for justice, equality, brotherhood, sisterhood, unity. vote for strength in diversity. vote for equal rights, opportunity and protection for all human beings. vote for wisdom and sanity. vote for humility. vote for empathy and charity. vote for democracy.

vote against hate. vote against deceit. vote against greed. vote against racism, misogyny, bigotry. vote against fearmongering. vote against divisiveness. vote against conceit. vote against ignorance, disenfranchisement, oppression, intimidation. vote against corruption, nationalism, oligarchy and autocracy.

godawful. godsend.

It's godawful to see my child seize, his mouth ghastly and agape, to hear that unmistakable, blood-curdling, strident seizure-shriek. It's godawful to see his muscles and limbs cramp and spasm, to know he has bitten his tongue or cheek again, to see bloody drool stain his pillow. It's godawful to know he'll suffer fits again and again, having already endured thousands of them.

Friday night's—the first of two in as many days—came out of thin air; no omens in the hours before. Afterwards, he whimpered like a pup, and though he cannot speak, it seemed as though he was trying to talk to us. Something papery rattled in his throat, impeding his ability to breathe. I crawled into his bed, gathering him in my arms as if that would somehow save him. Michael covered us and put on the nightlight. My boy's calm body belied his heart pounding feverishly under my palm.

The Palmetto Harmony cannabidiol oil I gave him in the seizure's wake seemed to thwart a second one that morning. He calmed and rested on and off all day. Weary, though unable to sleep, I read something my friend Martha Brockenbrough wrote which resonates with me:

We often are in the midst of stories we did not ask to experience.

But the task for us as human beings, as living beings, is to see what is in front of us. To love each other closely enough that we do not need words to understand the truest things.

Life asks us to look. And it asks us to clean up messes. It asks us to walk each other to the door.

She went on to say:

And we can look at a living being who is vulnerable and in need as a burden. 

But she asks us to do more—feed, clothe, shelter and love everyone.

At times all too often I do feel my son is a burden, one whose weight literally pulls at my joints and tendons, whose agitation chips away at my patience, whose restlessness impairs my sleep, whose seizures abrade my psyche, whose future terrifies me. But he is also a reason for being—a secular godsend—a human worthy of all the attention and love any of us can give him. He reminds me of the immigrant, the refugee, the waif, a being so vulnerable he needs constant protection from the elements, from accidents, from policy, from those who would prey on him.

In the dark, my mind races alongside Calvin's heart. I think of the upcoming election and what's at stake—the environment, human rights, education, justice, entitlements, healthcare, including protections for people like Calvin who have preexisting conditions—and I wonder why anyone would vote against their own or their children's interests (or not vote at all, presenting a similar risk.) A vote for the status quo would be godawful for a majority of women, the disabled, students, People of Color, LGBTQ folks, non-Christians, immigrants. A flip of the current leadership would be a godsend.

Before Michael and I had tried falling back to sleep in different beds, he reached down and pat my head. Cradling Calvin, I looked up at my husband, my eyes tearing, and said what I so often feel, "I'm so sorry you're not the dad of a regular kid."

And as I held my bundle of burdens, his throat rattling with each breath, I wondered what I'd do without him, my little godawful godsend.

             

A typical grand mal for Calvin, 2011.

halloween past and present

On the eve of this Halloween we woke to a nightmare; Calvin had one of his night terror-pain episodes—an hour or so of screaming and writhing in what seems is excruciating pain. Not knowing the source of his misery, I first gave him an acetaminophen suppository. When that didn't work, half an hour later I gave him ten milligrams of Palmetto Harmony CBD cannabis oil rectally. I crawled in bed with him expecting him to continue writhing, but he fell right to sleep, his arms wrapped tightly around my neck.

Twelve years ago, on Calvin's second Halloween ever, he underwent a circumcision, with the hope of stopping the urinary tract infections that had triggered his first two grand mal seizures. We called that one—not endearingly—Halloweenie.

We've spent a couple-few other Halloweens in the hospital enduring 72-hour EEGs, and on others we spent upstairs nursing Calvin after seizures.

It has only been in the past three years that we've taken Calvin door to door trick-or-treating, and even then we only go to five or six nearby houses. Calvin is totally unaware of the holiday, cannot hold a bag, can't unwrap the candies, doesn't anticipate or delight in dressing up. If he is doing well enough, we take him nonetheless, just to feel some semblance of normalcy. We selfishly do it for our own benefit and because we think the neighbors enjoy seeing him.

Tonight, in light rain, we hit three homes around five o'clock; our other neighbors were still at work. Calvin rocked his manwitch (wizard) costume, on which I didn't spend a dime. He fared better, probably, than any trick-or-treat outing yet, though became weary quickly, probably from the nightmare on the eve of Halloween.

click on any image to enlarge.

weight of the world

October has been, in great part, kind of miserable for me and my son—grand mals mark up my calendar dates in orange highlighter; too many blue squares represent partial ones. My son has seized on nearly half of this October's days. He hasn't had a month this bad since January.

Again, I ask myself all of the pertinent whys. Again, I spend long, monotonous days nursing a sick kid. Again, I grieve the loss of a healthy, typical child. Still, I am grateful for our privilege and fortune, for our nation, our home, Michael's job, our food, our drink, our relative health.

Outside these four walls the world seizes. A journalist is brutally murdered in his nation's embassy abroad. Innocents are starving to death in Yemen from a famine aggravated by Saudi attacks using weapons we supply. Central American refugees are fleeing poverty, rape and homicide in search of a better life. Homemade bombs are sent to prominent democrats—People of Color, vilified women, and former presidents. Two African Americans were shot while trying to shop at a grocery store. Jewish friends are once again made into scapegoats. Tree of Life synagogue was shot up by an anti-Semite. Eleven people dead. The list of innocent men, women and children maligned and murdered for the color of their skin or their religion continues to rise. Some conservative White Christians sit back and bristle at the thought of their political leaders and pundits being confronted and harassed at restaurants, while never seeming to flinch at the oppression, abuse and murder of marginalized Americans by domestic right-wing terrorists and White supremacists.

The anti-Semitic shooter gunned down two intellectually disabled brothers—the innocent of innocents, the purest of the pure—reminding me of the first victims of the Holocaust who were people like my son Calvin: the intellectually disabled, the infirm. I hear too many Americans grouse about athletes kneeling during the so-called national anthem. I see too many efforts to suppress the votes of minorities. I watch videos of White women calling the police on Black Americans who are minding their own business mowing lawns, swimming, barbecuing, shopping, entering their own goddamn homes. It angers me, this continued harassment, abuse and disenfranchisement of my fellow Americans who work their asses off, pay their taxes, live good lives. They're far better men and women than many of these politicians are.

Sometimes I wonder if Calvin's seizures are—like the gravity of a full moon—triggered by the weight of the world. I wonder if they'll ever stop, or if they'll keep marching right through. With his and others' suffering in mind, I scour the internet for images of Yemen. I find the photo below. I think to myself what we all should be thinking—this could be my child.

Photo by Abduljabbar Zeyad/Reuters

the rest of us

Outside raking, I try to make sense of this effed-up world we're living in. In the cool glow of an overcast afternoon, I work up a sweat turning needles into piles of copper, all the while conscious that wealthy White Christian conservative men (and a smattering of their female counterparts) are brazenly cheating and lying, trying to control, disenfranchise, oppress and legislate the lives of the rest of us.

Who are the rest of us? I'll tell you: women, Black people, Latinos, Native Americans, Muslims, atheists, Jewish people, old folks and the infirm, mentally or physically disabled folks, young folks, students, union members, artists, journalists, teachers, scientists, environmentalists, public employees, poor people, gay, lesbian, bisexual and transgender people, homeless people, former inmates who have done their time and paid their debt to society or should have never been incarcerated in the first place, immigrants, pregnant women, and people who have preexisting conditions like my little boy.

My son Calvin by the way, because of his disability, cannot—nor will he ever be able to—vote; the rest of us must do it for him and for each other, or risk continued disenfranchisement by the powerful few who have nothing to do with the rest of us except to exploit. They have shown us what matters to them, which they will protect at any cost to their constituents and to the earth itself: money, power, control. They have proved incapable of walking in our shoes. Vote them out. Vote now.

glimpses

Before he came into the world, I used to have glimpses of myself with him as a baby at the beach, the two of us plopped on a blue and yellow sunflower blanket, his blond curls caught by the wind. Imagining him older, I'd see us walking silently through a pine forest, looking up through the trees, watching for woodpeckers, hearing the creak and squawk of rubbing branches in the canopy. At some point I thought perhaps we'd fly with him to New York, to France, to Italy.

Now I walk alone with my dog Nellie across a vast field, tears trickling down my cheeks. I call her and she runs to me. Half-heartedly, I play hide-and-seek. She understands and can do so much more than her human brother. I get glimpses, but mostly I feel so little semblance of what I think parenthood must be. My fitful grief gets all balled-up with loss of hope, expectation, ambition, dreams.

It was hard enough knowing much of his brain's white matter was missing. Worry. Then my planned cesarean turned into an emergency. Fear. Then he needed help breathing and eating. Anxiety. Then he failed to thrive and barely develop. Guilt. Then we learned he could hardly see. Despair. It took him years to crawl and walk, and he has spoken just a single word—Mama—once. Misery.

Then he started to seize.

We keep him alive. Keep him fed, keep him warm, dry and clean. Try to control his seizures. Like any parent, we love him immeasurably, but beyond occasional smiles and giggles, there are very few glimpses of normalcy or happiness in our infant-toddler-teen.

In my lowest moments I think of good, productive and exciting lives wasted on years of soiled bibs, dirty diapers, sopping garments, sleepless nights, hopeless futures, monotony. Had our son been born healthy, I consider the freedom we'd be moving into with a child old enough to be alone. I juxtapose that glimpse of liberty with a heavy one of wondering how long my body and spirit can withstand the burden—my child's weight, his restlessness, his seizures, his behaviors, his need. I glimpse that burden in the mirror. I feel his trouble settling inside of me.