walking in circles

Upon seeing Michael walking in circles behind Calvin—harness in hand—in the small, beige waiting room, a man seated next to his daughter says, (referring to Calvin), "He must do twenty miles a day ... I'm breaking a sweat just watching him!"

"He gets it," I whispered to Michael who nodded in agreement. The room lit up with laughter. My nose stung and I'm sure I wasn't imagining Michael's moistening eyes.

Calvin doing his rounds at home

wishing on stars

I don't believe in God, at least not the God of organized religion. Not the Jewish one or the Christian one or the Muslim one. And I don't believe in the widely embraced beliefs of heaven, hell or Satan. What I do believe in is the beautiful interconnectedness of everything in the universe—the planets and stars, the rocks, the animals—and how we are all a part of it and will rejoin it in an elemental way when we die, when we become, again, stardust. These feelings I have for the sun and the moon and the far off galaxies and the pull they have on me, this wishing on stars I sometimes do, is powerful spirituality. My energy will not be lost when I die. It will live on in the memory of those whom I have touched and in the soil and sea where my ashes will scatter. I will become earth and sky and wind and river and sea and universe all at once.

But when a friend tells me that they pray for me, I understand. And when someone whom I've never met offers me this kind of solace on a difficult day, in a manner in which I feel deep within my bones, I melt into her words and heal just a little bit. In reading this you can see why:

each day when I light my candles I say the names of your family aloud, with the others I choose to remember in this daily way, and I pray for peace and healing and love for you all and I carry a ruby for grief and an obsidian for comfort and a tiny icon of mother and child and a small wooden angel and some other things which i carry in my pockets and find in my hands several times a day and though it is the way of a child to hold to such talismans i allow myself this touching home, these miracles of the universe, and i reach for my mother and father, and my grandparents, and dear friends i have lost and for my own lost self and for all those who struggle and all those in pain and like a child i wish on stars and hold my stones which once were stars and i feel the love of the universe and send some to you and to your small miracle and trust it reaches your family in some way, like sunlight on a cheek, like sea mist, like hope, like yes, like moonlight, like a small bird shaking her feathers, like a shadow of a tree bending just slightly in morning air, like bending on one knee, on both knees, like bending the head with hands forward pointing from my heart to yours

I, too, send my deepest gratitude and love to you, Elizabeth, and to the rest of you, brilliant stars, who have lifted me up—and continue to do so—and fill my heart, dry my tears, touch my spirit and who send your love. You make my world, my universe, a better place to be, a place where I can believe in the power of wishing on stars.

photo by Michael Kolster

once an athlete

Cyclers in their bright regalia whiz past us. I spot them out of the corner of my eye as Calvin stumbles around trees, careens into bushes, stares up at the sun, teeters and tips. When we are on the grass I let him fall with minimal support since it is soft and he needs to learn, though he may never, that when he looks at the sun he’ll tumble. His balance is for shit to begin with—you know, the seizure drugs and all—and the sun adds another vexing element to his complicated equation.

I think to myself, I’d be kicking some ass out there, as scores of toned athletes hunched over their bikes take me back to my days as an athlete. As a collegiate swimmer, in some circles I was pretty good while in others, like the PAC-10 conference, I was mediocre at best. Regardless, I’d have the advantage as a triathlete, something I’ve toyed with doing over the years since I’m also a decent runner and I know I’d do well at cycling if I had the right bike. But the four hours of training every day for years on end has soured me on the idea and has curbed my desire for getting back into the pool on a regular basis. And though my body has softened and my brain could use the regular dose of endorphins that swimming offers and, despite my age, I know my muscle memory will help get me back into shape quickly, I still find myself in a prolonged rut, making all sorts of excuses not to get back into the pool:

it’s too cold it’s too sunny i don’t feel good i’m too tired i have a headache i want to lose five pounds before i get into a swimsuit i think i'm coming down with something i want to garden instead i want to write instead i don’t feel like it i have too much to do today

And so it has been the same for nine years ... since Calvin was born. And I try to motivate myself by thinking of my glory days, of my once svelte body, of the ribbons and medals and trophies I’ve won and since given away, of the Most Inspirational and Team Captain honors which my teammates lovingly bestowed upon me in summer league and high school and AAU and college, of my All-American state championship relay in high school, of our men’s and women’s NAIA National Championship titles. Still, none of it rouses my desire.

So for now, instead of athlete, I’ll be coach and captain to my son Calvin. I’ll commit to his development and praise his triumphs and guide his progress and critique his mistakes and inspire his perseverance and set his goals and celebrate his victories and tend to his bumps and bruises, even as the colorful blur of athletes unknowingly speed past us and until one day I try again for myself.

circa 1971 when I was a couple of years younger than Calvin is today

no stopping

It does not matter how slowly you go as long as you do not stop. 

― Confucius

photo by Michael Kolster

friday faves - melancholia

It’s been haunting me for days, this Melancholia. I can’t seem to get it out of my head—not that I want to.

In the opening sequence, the film’s orchestral score sweeps me up then drags me under. Kirsten Dunst’s pained expression—eyes half-mast as if dead, hair dripping—ropes me in with the birds and dark matter falling from the sky. A Hitchcockian moment, the scene morphs into a series of super-slow-mo canvases—rich, surreal, botanical, like oil paintings—mingling with celestial panoramas. I feel gravity's pull, the essence of depression tugging at me like the grimy swathes shown entangling the bride’s wrists and ankles, and the weighty steps of a desperate mother hugging her boy across her chest. Just like I sometimes carry Calvin, I think, especially when he is having a seizure, trying to find some safe haven.

I sensed that the world might end—planet Melancholia perhaps slamming into the earth—and I understood the bride’s despair that dampened and soiled her billowy white chiffon. But what I hadn’t understood was exactly why I couldn’t stop thinking about the film—its images, its characters, its music, its ending—kept rolling them over in my mind like a handful of stones.

A few mornings later, over a cinnamon roll and a perfectly round coconut cream moon, Michael and I revisited the film. We sat across from each other in a booth near the window of the little storefront donut shop. I told him that Melancholia had stayed with me ever since we’d seen it several nights before. I explained how I related to the character, Claire, as she carried her son alone across a field, each step sinking knee-high into soggy turf, trying in vain to escape obliteration. I wondered how I’d feel if I knew that doom was approaching with the ferocity of a hurtling mass, wondered what I’d do.

“But wouldn’t we know years in advance if a planet was headed toward the earth?” I asked.
“Yes, Michael replied, then reminded me, “but Melancholia had been hiding behind the sun.”

He explained that Melancholia was allegorical, and as he did I realized I’d foolishly missed it—its painfully obvious metaphor for despair, grief and loss that seem to come out of nowhere. “Just like Calvin,” I remarked, tears welling up in my eyes as I licked coconut glaze from my lips. I reached across the table to hold Michael’s hand whose clear blue eyes appeared moist and edged pink. “Yep, just like Calvin,” he added, and I cried for our boy—and for us—hit so hard with illness, suffering, debilitating conditions, epilepsy and its heinous treatments.

We went on to talk about how everyone has their own Melancholia that suddenly appears, bringing us to our knees. For some—like us—it comes in the form of an ill child. For others, it’s the loss of a job, the passing of a parent, sibling, spouse or partner, a terminal disease, a chronic condition, an abusive relationship, a divorce, the death of a child. We cannot escape, none of us.

And so I ate my last piece of donut in relative silence, then tasting nothing but a thin, greasy film on the roof of my mouth, thinking about Calvin's clear blue eyes, like two celestial orbs reflecting all of my grief, loss and fear, but also my salvation. We're two planets colliding, I lovingly thought, Calvin: my own little Melancholia, my moon, my star.

Originally published 04-30.12.

from Melancholia, directed by Lars von Trier

whole lotta trouble

At first, even before Calvin was born, the trouble was two enlarged ventricles in his brain and the absence of much of its white matter. Then it was his premature birth, his trouble breathing, his dangerously rapid heartbeat and respiration, his inability to keep his body temperature up and the absence of his suck-swallow reflex resulting in his struggle to nurse and relative failure to thrive.

Then, the trouble was his vision: 20/1000—five times worse than what is considered legally blind—along with his penchant for staring at the sun. From there we mourned his countless missed milestones, pretty much all of them. He was colicky and refluxy and irritable and floppy. Then, when he was eighteen months old, we had the scare of Calvin’s first seizure, but the real trouble came after his epilepsy diagnosis when he was just two, because that’s when he started having to take serious drugs.

He’s had eye-surgery and a painful late-stage circumcision and two nuclear medicine tests where he swallowed barium to check his bowel and urinary motility. He’s had blood draws and intubations and sonograms and MRIs and CT scans and X-rays and multiple EEGs and one sleep study. He’s been taken away by ambulance and been hospitalized more than I care to remember. During one forty-five minute seizure we thought he was going to die. I know I've said this all before. I lament it every day.

He’s knocked out a tooth and whacked his face on the side of the tub even while wearing a padded helmet. He’s bloodied his nose and bashed the hell out of his cheekbone and gotten strangled in the safety net of his crib and choked on food. He’s cracked a tooth in half and fell off of our bed and out of his crib, both once. It’s a minor miracle that he hasn’t sustained a major head injury since his balance is so godawful bad due to the dizzying drugs.

He's tried umpteen antiepileptic drugs and drugs for reflux and drugs for slow motility and  supplements for sleep and seizures and mood. We’ve tried troublesome dietary therapies and dubious cranial sacral manipulations and homeopathic tinctures and alternative functional medicine to eradicate yeast in his bowel.

He’s had trouble with sleep and pneumonia and urinary tract infections and ear infections and bronchitis and hypercalcification in his kidneys. His bowels have been impacted and recently we’ve begun to investigate more urgently the theory that perhaps he has been suffering from reflux, so he’s starting another drug for that tonight, and you can be sure I’ve researched its laundry list of side effects which about kill me to read. If that drug doesn’t work we’ll have to put Calvin under general anesthesia—again—to examine his esophagus for strictures and/or ulcers and then do a 24-hour nasogastric pH probe to test for the reflux once and for all.

And through all of this Calvin has to endure seizures despite taking powerful drugs and not be able to tell us how he is feeling or why, beyond simply coughing and screeching and whining. But he handles it amazingly well, far better even than I.

Yep, my son is a whole lotta trouble. But when it all seems more than I can bear I have to remember—besides never taking my health for granted—he’s a whole lotta love, too.

our little trooper

works of art

These are Calvin's recent works of art—which I think are beautiful—no doubt achieved with much help from his amazing one-on-one, Mary. What a joy it is to see him make a happy mess like I did as a child, though I'll always wonder if he has any appreciation for the venture or its result.