12.31.2012

hopes and regrets

regrets:

Selfishness. Impatience. Inattentiveness. Disorganization. Neglect. Churlishness. Negativity. Gossip. Procrastination. Criticism. Worry.

hopes:

Patience. Productivity. Focus. Seizure free, drug free Calvin. Wiggle room. Repose. Travel. Exercise. Adventure. Hug Mom. Read. Read. Read. Tranquil child. Long walks. Sound sleep. Write book.

photo by Michael Kolster

12.30.2012

other

Everywhere I go I am reminded of how much Calvin is—of how we are—different, “other.” In the cafe or grocer little children peel off of their mothers’ sides to come and stare—front and center, bug-eyed, sometimes sullenly—at my boy. As a kid I would’ve responded sarcastically saying, take a picture, it lasts longer. But now, I simply gawk back at them just as curiously as their little, serious faces peer at Calvin. They’re probably thinking, what’s his problem? A kid once asked me that in the neurologist’s waiting room.

At twilight several weeks ago I stopped at the main intersection in the middle of town. Calvin was in the back seat pulling his usual shenanigans; biting his shoe, poking his eyes, happily flopping his arms to the music like a chicken. I noticed a driver idled in the SUV next to us ogling Calvin and looking vaguely repulsed. I gazed back at her for what seemed like five minutes before she noticed me and then, when I caught her glimpse, I smiled. She didn’t. Just stared back at me seemingly locked inside some paralytic, perplexed state of shock or disgust. Her handsome, oblivious teenage boy sat in the passenger seat with headphones stuck into his ears. Somehow, I felt sorry for her as she drove off.

Then there are those who see us and smile. Some watch us fondly from inside the grocery store, Michael pushing a cart while I do damage control holding Calvin’s hand or harness as he teeters drunkenly around displays of fruit and bottles of wine. They watch us bring our booty to the register where the clerk asks if Calvin might like a sticker and I graciously decline knowing he’d just try to eat it. They watch us move hand-in-hand through the wide automatic doors cheering Calvin along as he pigeon-toes across the parking lot cawing like some bird. They watch us load his screeching-drooly-spastic-sac-of-potatoes body into the car, buckle him up and kiss him. These precious few know something. I can see it in their compassionate eyes, hear it in their kind words. They’re the type of people you just want to embrace, or adopt and bring home, set them up in their own room with a warm blanket and a cup of tea. Often they’re old with leathery wrinkles and moist, red eyes. Some are young and vibrant, oozing sparkling energy like a dewy chrysanthemum or a sunbeam. All of them touch me with their kind gestures that often bring a familiar sting to my eyes and a thickening in my throat. I see the same in Michael’s teary eyes sometimes, and it makes me love him that much more.

I’ve always felt different from the rest of my own family in most ways. Michael is too. You know, the black sheep, the weirdos. I guess I’d say we dance to the beat of a different drum, and we like it that way. It feels good to see the world in somewhat unconventional ways, to see life through a sort of prism with all its refractory qualities, angles of light and color, shimmering, bending, dark at times. And now, with Calvin, life appears remarkably unlike anything we’ve experienced before. We’ve gone through another metamorphosis, see life through yet another filter that—if our child were healthy, normal—we might never have known. Each year living with Calvin strips back another layer, like some withered bark or faded, brittle skin, of what we thought we knew but didn’t. Though life is hard it’s always new and changing—we are changing—and it feels good, right. And in great part due to Calvin, we know and live “other” and embrace it.

There is a beautiful scene in the film Tree of Life, set in 1950s Texas, where a mother takes her two young sons to town. Crossing the street behind her the boys pass a swaggering drunken man who tips his hat to them. Laughing, the brothers mimic him cutting zigzags and bumping into each other. Another stumbling man approaches, his body queerly arched to one side, his arms drawn up to his chest like a squirrel. He drags one foot nearly on its ankle. The boys stare but do nothing, noting the peculiar but sad circumstance of his disability and perchance, in their minds, noting the sorrowful state of the drunken man. Lastly, the brothers skirt past a dirty, disheveled man in shackles. Their mother lifts a drink from her thermos to another's lips. One son asks in a whisper, perhaps to himself, can it happen to anyone?

Yes, it can. I know. It can happen to good people and bad people, to adults and children, to saints and heathens. We can all end up living the life of “other,” and at times we’ll be singled out, gawked at, mimicked and shamed, but by those who sadly, and for whatever reason, don’t have the sublime ability to look through life’s beautiful prism and see—embrace—the poignant beauty that is “other.”

Version originally published 01.25.12.

photo by Michael Kolster

12.29.2012

in conversation with mom

Talking with my mom on the phone the other day ...

Mom:
Where are you and when am I gonna see you?
Me:
I'm in Maine and I'm coming to visit in a few months, Mom.
Mom:
Oh, I can hardly ... uh ... do what people do around that.
Me:
Do you mean you can hardly wait?
Mom:
I can't quite hear you.
Me:
Put the phone closer to your ear, Mom. Now can you hear me?
Mom:
I can hear you but I’m not really ... getting anything.
Me:
Is it because you can’t hear me, or that you can’t understand what I'm saying?
Mom:
Probably a little of both. (she laughs)
Me: 
You’re crazy, Mom. (chuckling)
Mom:
Well, then that makes two of us! (we both laugh)
Me:
So how are you feeling lately?
Mom:
Oh, still loving life.
Me:
You’re doing pretty great for being eighty-three years old, Mom.
Mom:
Really? I’m that old? That can’t be!
Me:
Yep, I'll be fifty next year and you are eighty-three.
Mom:
Well, then we better start living it up! (we both crack up)

I couldn’t agree more, Mom. Missing you. I'll be back again to see you in the spring.

Mom and Me 2006

12.28.2012

friday faves - man on the moon

It was as though the sky
had silently kissed the earth,
so that it now had to dream of sky
in shimmers of flowers.

The air went through the fields,
the corn-ears leaned heavy down
the woods swished softly—
so clear with stars was the night

And my soul stretched
its wings out wide,
flew through the silent lands
as though it were flying home.


—Night Of The Moon, by Joseph Freiherr Von Eichendorff

Awake in the middle of last night the full moon appeared as three, each disk diminishing slightly in size and brightness, tripled in the storm window’s glaze like a row of silvery coins. Looking up, my breath fogged the glass, but I could still make out the shadowy areas on the moon's seemingly flat plate surface. There’s the man on the moon, I thought. A few weeks before I’d seen a partial moon with two brilliant stars and thought to myself, Mama moon and baby stars. But truly, the full moon has always reminded me of Calvin, or rather, he of it.

The first time I saw Calvin was from the opposite side of a thick clear plastic box—an isolette. His head was round, topped with downy fuzz, his ears—lacking cartilage—laid flat against his head. He had no eyelashes and his glowing skin was marked, wrinkled and red where tape had been peeled off having earlier secured the tube that snaked down his throat to help him breath. His tiny bird arm was splinted and bound where the IV needle had been threaded. With eyes closed, he appeared so peaceful if not for little worry lines already formed on his brow. “He looks like the man on the moon,” I said to Michael, and began to cry.

“Hi Calvin,” I said to my wee being, smaller than a sack of sugar and stuck with leads and monitors and wearing only a diaper—so exposed, so vulnerable. At the sound of my voice Calvin opened his eyes for the first time, and I felt my heart free-fall, like a shooting star across a moonlit sky.

Originally published 01.10.12.

photo by Michael Kolster

12.27.2012

white out

There’s a white out beyond the cool glass panes that sets the house aglow. Relentless. Quivering. Frozen. Michael, in his disdain for it, refers to the snow as radioactive fallout. Sometimes I can see why. The way the flakes fall so fast and swirling feels impossibly treacherous, oppressive. I hear a faint ringing in my ears as I sometimes do and I wonder if it’s simply a matter of being human or if it’s just me. Inside I’m somewhere between violet and smoke, a low rumble travels through my bones, my aching head. A string of negativity runs taut from head to toe, its threads seeping out of my pores like garlic. Everything seems to deserve a scowl, and the world, with all of its sounds and words and sights, comes to me in complaints. What am I doing wrong?

Some early morning skiers in bright regalia slide their way down the unplowed road past our windows. We can’t get out into it, I think to myself. Can’t feel the sting of a bitter wind that makes noses drip and cheeks flush like berries—a wind I'd happily welcome abrading my face if it meant playing outside with my son. Can’t catch snowflakes on our tongues or form balls of the stuff to toss at each other, can’t create a snowlady with sticks for arms and a pine cone nose. And those beautiful bell-shaped angels made in the shape of a child—don’t even go there.

So we stay inside—sequestered—as snow gathers like lichen on cedar shingles and burdens green bows. From somewhere down the street the meaty drone of a snow blower competes with the grinding of Calvin’s teeth and if I close my eyes I can hear myself breathing. And I know on days like today I must take one deep breath at a time.

12.26.2012

paraphernalia

I sit motionless in a gray steel and vinyl chair before a grid of full-spectrum compact florescent lights, eyes closed, a double-sided dark cloth draped over my shoulders. For ten minutes I hold this pose as Michael looks into the ground glass focusing the image of my face onto it, adjusting the camera’s fully extended bellows. He vanishes into his darkroom where he pours the emulsion onto the glass plate and dunks it into a silver bath before emerging and snapping it onto the back of the camera. He counts down, “four, three, two,” and on the count of one I take a deep breath and hold it for the forty-second exposure. In my stillness I realize how calm I feel—warm, silent—and I remark about it later, about how I rarely, if ever, relax like that and just ... do ... nothing.

My husband’s studio is packed to the brim with his photographic paraphernalia: chemicals, cameras, flasks, clamps, plastic trays, cloth and latex gloves. And then there are the photographs themselves; large black and white riverscapes; hand-tinted prints of old mill town structures; expansive cityscape triptychs, curled satiny silver gelatin prints; an oversized cyan sky reflected in a muddled green river reminiscent of an oil painting; and translucent glass-plate ambrotypes resting against a black velvet backdrop that magically reveals the rugged beauty of the images. To my delight, in nearly every section of the large space he’s hung photographs of me.

Stacked on end against the walls lean huge framed photos wrapped in smooth brown paper and masking tape. Some prints are pinned up, others hang framed on screws or nails. Gunmetal gray file cabinets bulge with 4 x 6 glossy prints inside waxy paper sheaths, countless yellow boxes boasting thousands of photographs buttress towers of flimsy negative sleeves from recent years past.

Michael is the most prolific artist I know, tirelessly laboring, inventing, creating—dreaming. His bodies of work are vast, deep and varied. His fearlessness of new territory, different methods, themes and subject matter reminds me of the innovation of Miles Davis or Beck—constantly evolving, experimenting—yet the familiar thread of genius throughout the work remains. He’ll blush at reading these words, dampen them down in his own modest way, but I know, his work is gorgeous, provocative, impeccable and timeless.

A few nights after modeling, I return to his studio to see the day’s work. Scattered across the tabletop are countless orange bottles with childproof caps sporting printed white labels with Calvin’s name. In large bold letters one reads MAY CAUSE DIZZINESS. Many are empty, others still contain the sinister little capsules stamped in a tiny font: ZONEGRAN. We’ve saved most of the empty or discontinued drug canisters and their contents over the past six years for Michael to photograph. Along with the amber bottles are translucent ruby vessels with traces of syrupy liquid beading their insides, paper-backed foil blister packs—the kind that are oh-so satisfying to pop—bundles of striped urine test strips and multiple dozens of crinkled, stained, handwritten medication logs with rows of penned in Xs and administration times.

“Makes me sick to look at them,” I say to Michael, regarding the piles and piles of foil and plastic casings strewn on surfaces or spilling like guts from every possible nook and orifice in the large, cluttered space. I imagine Calvin’s pristine little body, his smooth belly and flawless skin, and think of all the wicked chemicals we’ve spooned into him over the course of nearly seven years. Frigging seizures, I think, effing drugs. And yet this paraphernalia proves so ironically beautiful to behold, like precious metal, little gems or handfuls of pearls. At the same time they remind me of the acrid metal of war, of steely prison walls, padded white cells, of the numb brain and bleak future of my precious, innocent little boy who, every morning and night, we woefully coax to open his mouth and choke down this string of endless, chalky, bitter pills.

photos by Michael Kolster

12.25.2012

ghosts of christmas

Christmastime: a bittersweet mix of joy and sorrow, memories of the past, disappointments of the present and hopes for the future. A window into time. I find myself missing my dad, imagining him chopping down and hoisting up our huge fir tree, clowning around while opening presents, getting a little tipsy on extra wine my sister and I sneak into his glass, making funny faces as he carves the Christmas bird.

This year I did not decorate, let the ornaments sit in boxes in the basement, didn’t string any lights, only lit candles that flickered in our drafty house dripping waxy manes. After waffles we opened the presents that Michael’s parents always send to us, all wrapped up and tagged. There were a few colorful plastic infant toys for Calvin which, after a period warming to them, he’ll love mouthing. As I read the greeting card to Calvin my eyes filled with tears:

Grandson

Thinking of you at the holidays and wishing you all the joys of the season ... Thinking of you with love all year, because you’re so very special.

We love you sooooooo much! Hope you like your toys and that this contribution will help find a cure for you!

Love always,
Gma and Gpa


As we opened the remainder of the gifts, Calvin proved completely oblivious that this day might be different than any other, that this might be a day when Mommy and Daddy drink eggnog with bourbon at 10 o’clock in the morning. Still crying, I said to Michael, “I wish Calvin knew what was going on ... we’d be such good parents to a normal boy ... have so much fun.” I imaged Calvin asking us about Santa, hoping for snow, ripping open presents, joyfully bounding around the house. Instead, Calvin slumped in his johnny-jump-up, rubbing his eyes with unexplained red hands.

As I write this, snow begins softly falling onto grass and copper leaves. It feels soothing, meditative. The wood stove, with its roaring fire, expands and creaks. Albert Finney sings songs from the musical movie Scrooge and Michael putters in the kitchen making a pumpkin pie. And while it is a very special day for so many, in this household it is just like yesterday and the day before that. But we are together, which in the scheme of things is all that really counts.

Ghosts of Christmas Past:

photos by Christy Shake and Michael Kolster

12.24.2012

merry winter's morn

The restaurant was packed. We waited single file in the foyer, frigid air channeling in through an open door. Michael held Calvin captive as he fidgeted and fought while some diners cast their warm smiles upon us, others averting their gaze in a manner that appeared very deliberate and which, sadly, I’ve become accustomed to.

After ten minutes or so we were seated at the end of a large table near the windows. I helped Michael slip Calvin’s long body into an infant high chair, carefully navigating his feet through the small spaces so as not to bump and bruise his shins on the way through. Immediately, Calvin began banging his palms on the table, accosting the paper place mats and snatching the utensils and laminated menus. I rummaged through my bag searching for a distraction, perhaps his sippy cup or a crunchy snack. I unearthed his rubber giraffe first, which he mouthed and slimed then ripped from his teeth launching globules of drool into the air.

Despite all of Calvin’s racket we somehow managed to scan the menu. Michael ordered the hungry man skillet with coffee and I settled on an egg 'n' cheese sandwich, crispy hash browns and grapefruit juice. Just before our meals arrived, the server seated a group of three elderly men at the opposite end of our table. Two were white-haired, one bald, and all were missing most of their teeth. It took no time to discern that the three of them were deaf. The man seated nearest us, the bald one with big ears, took particular interest in Calvin, smiling broadly with a certain twinkle in his eye. I envisioned his cheerful, expressive face painted up like a clown, all white and black with a big red rubber nose and laugh lines at his eyes making merry for children.

I looked at the man and pointed to Calvin, then spelled out Calvin’s name using sign language, something I’d learned as a child because of my deaf uncle. The man began signing quickly, so I grabbed a pen and wrote on the back of my place mat: “I don’t know much sign language,” and I went on to write that, along with his neurological deficits, Calvin also has epilepsy. As the man read, Calvin squirmed in his chair, pitched sideways to stare at the sun, banged on the table some more and shrieked. I rolled my eyes with a half-smile and spelled out, “T-R-O-U-B-L-E.” The three of us giggled as the man’s companions looked on with kind smiles.

There was something about being at a table with our wordless, disabled eight-year-old child sitting next to a bunch of old deaf men; something akin to solidarity, a particular knowingness. Our exchange was so delightful, the man’s kindness and sense of humor so touching, that it made both Michael and I tear up. I gestured to the man that Michael was crying. In return he thumbed at Michael and pantomimed spanking a child over his knee and suckling an imaginary bottle like an infant. Smiling, I told Michael that the man thought he was a big baby. Our hearts swelled with laughter.

Having employed some spatial tactics—sliding our plates just out of reach of Calvin's flailing hands—we were able to finish our meals together, when in the past we’ve had to tag team; one of us eating while the other walks around with Calvin. We waved and signed goodbye to our new friends and snuck out the side door just in time to avoid filling the restaurant with the stench of Calvin’s poopy diaper. We walked Calvin hand in hand to the car, opened the back and proceeded to change his diaper. It must have been below freezing, steam rising off of Calvin’s wet-wiped butt to prove it. Instead of being perturbed at the task, Michael and I chuckled, a sure sign that it had been a very merry winter's morn.

Rolly's Diner, Amber Waterman/Sun Journal

12.23.2012

tree of life

The nuns taught us there are two ways through life—
the way of nature ...
and the way of grace.
You have to choose which one you’ll follow.
Grace doesn’t try to please itself.
Accepts being slighted, forgotten, disliked.
Accepts insults and injuries.
Nature only wants to please itself.
Get others to please it too.
Likes to lord it over them.
To have its own way.
It finds reasons to be unhappy ...
when all the world is shining around it ...
when love is smiling through all things.
They taught us that no one who loves the way of grace ...
ever comes to a bad end.


—Spoken by a mother grieving the death of her son, from the film The Tree of Life, by Terrence Malick

To me, grace and nature are one in the same—no way to separate them. Nature’s universe encompasses all—the rocks, the rivers, the forests and deserts, birds, animals, fish, earthquakes, tsunamis, tempests, light, energy, the clouds, stars, planets, galaxies, black holes and supernovas. Nature does not discriminate between the healthy and the sick, the good and the bad, the wealthy and the poor, the devout and the secular.

In that way, I can accept my precious boy who, through nature, became less of what he could have been yet more of what he is—loving, incongnizant of much, living in the moment, wordless, wanting only of essentials, simple, pure, changing with the passing of time—some from the storms inside his brain—yet not changing at all. Like a tree whose limbs are beautifully twisted and gnarled by ages of drought, freezing temperatures and the wake of storms, covered in soft lichen as if jade lace stitched onto a taffeta gown—Calvin’s beauty is touching, timeless, makes me tremble.

And if I must one day send him first, if his time here will be only fleeting, I can feel at peace knowing he’s returned to that from which he came—the earth, the sky, the moon—and I’ll carry him around as I had once before, as if he is my heart's inner star and my soul's universe, and just as much as he is now, he’ll continue to grow inside me like a little tree of life.

Originally published 01.03.12

photo by Michael Kolster

12.22.2012

beautiful day

On a beautiful day that I dream about
In a world I would love to see
Is a beautiful place where the sun comes out
And it shines in the sky for me
On this beautiful winter's morning
If my wish could come true somehow
Then the beautiful day that I dream about
Would be here and now


—Sung by Bob Cratchit’s Tiny Tim, in the musical "Scrooge"

Christmastime seems an odd time of year, so much emphasis on the material and yet as much on the giving as in the getting. I remember the sweet anticipation I had on Christmas mornings, as a kid, sprinting down our long hallway into the living room wondering what Santa had brought and hoping, at the very least, he’d left me candy and stuffed animals.

Our son Calvin knows nothing of Christmas, Santa, Jesus, Hanukkah or Kwanzaa or why some people celebrate them. He’s oblivious to the rush of the holidays, the traffic and long lines, the ridiculous reflexive press—as if it were stamped into our DNA—to turn out umpteen-hundred greeting cards without stopping to sign much less include a personal message to some all-but-lost correspondences (though I must admit I love getting them.) In many ways I think Calvin is lucky not to have to worry about such things, not to have to experience the painful disappointment in receiving the wrong gifts, not to have to go to school after winter break and ashamedly compare his modest holiday loot with his peers only to trudge home thoroughly dejected.

And—mostly—I feel lucky, too, for my circumstances don’t warrant getting caught up in too much of the rigmarole that consumes much of the holiday season. But I also feel sad.

Though Michael and I aren't Christians celebrating the birth of Jesus the way we'd been brought up to do, we still mildly indulge in some secular aspects of the holiday. I’d love to wake up Christmas morning to Calvin jumping into bed with us before scurrying downstairs to unwrap presents. I’d love to see him rip apart the colorful printed paper, peeling it down to its surprise center. I’d love to lavish him with peppermint candies and homemade eggnog. I’d love to teach him how to make an orange and clove pomander, cut snowflakes out of folded paper and tape them to the windows, decorate gingerbread cookies, build a snowman, watch him sled down a hill with his daddy and decorate a tree with me. Instead, we buy few—if any—presents. Calvin doesn’t open them and we don’t make holiday crafts together—he can’t. We don’t much go out in the snow since walking in it is impossible for him. And we don’t decorate a tree anymore because—since Calvin was born—those ragged cardboard boxes filled with glinting glass ornaments wrapped in crumpled newspaper and nestled in egg cartons, feel empty—soulless—and it's just no fun to decorate, particularly because in a perfect world my sweet little boy would be helping me. Instead, I sit here wishing I could just kick those boxes off to the Island of Misfit Toys. But I keep them and they're gathering dust in the basement, while I continue hoping—perhaps in vain—that one day things might be different.

Then something reminds me of Dickens’ sweet little golden-haired boy, Tiny Tim, perched on his father’s weary shoulder, an iron brace supporting his leg and a worn wooden crutch tucked under his arm. The image of Tiny Tim conjures feelings of joy and sorrow as twisted as the crippled boy’s frame. In front of a huge hearth he sings a song to his family with the face and voice of an angel—a song about what really makes him happy: here and now. Just like Calvin, I think. Just what Calvin has taught me to do: to love and cherish life and home and family, all things that can’t be purchased, boxed up, wrapped with ribbon or set under a gleaming tree.

And, in the back of my mind, is this lonely black and white image of that little wooden chair snuggled up to a huge fireplace, a wee crutch absent an owner, leaning coldly against its back. And I think to myself—hope to myself—that this beautiful day, this here and now with my husband and our sweet boy Calvin will last a good part of forever.

Version originally published 12.25.11.
 

12.21.2012

twenty-six

Stepping
into a seaside childhood morning
—only colder—
Wind whipping,
Moist and grey and brisk,
Rudy by my side.

Muddy
gravel underfoot,
Bits of sandy ice, a soggy cigarette butt.
The chapel bell begins to ring,
I stop to listen,
and count.

Twenty-six.
My head hangs low
and sorry,
Straining to hear each faint toll
amid the hiss of traffic
rushing by.

The fields,
A semi-frozen marshland.
My ribs lace up,
Wind whisks away each breath,
I begin to sob into shallow
glass puddles.

A sudden squall
evokes a school of hushing voices.
The tops of watchful trees
Standing tall and firm,
yet swaying
Nonetheless.

Silent forest,
distant barking dogs,
A murder of crows looks on.
Thwap, thwap, these rubber boots against
Bare calves
Sting.

The skies
are silver, lead and low.
Shivering limbs set free cool droplets
like tears upon my face,
One for each child lost we must remember.
 Twenty-six.

photo by Michael Kolster

12.20.2012

the moon and the twinkling stars

In bed alone last night I hugged my knees to my chest in an effort to keep warm. I gazed sideways out the western window at a web of black branches and a scant mist suspending the moon, which appeared as a stemless goblet half full of shining silver. I thought about the twenty Newtown, Connecticut first-graders and it occurred to me that the moon might be holding all of their brightness for the rest of us to see.

I’m having a hard time not thinking about those children, but perhaps I shouldn’t be trying to avert my thoughts, shouldn’t attempt to move on so quickly, or forget. As I sat in the doctor’s office eyeing glossy magazines with names like, Parenting, Family and People, I thought of them again. I picked one up and thumbed through its pages, which were plastered with images of happy families, proud parents with their beautiful kids reading, snuggling, smiling. I usually avoid looking at these kinds of periodicals since they underscore so many things I am already painfully aware that I am missing out on, being the mother of a severely disabled child. I wonder how the Newtown parents might react when they see this kind of stuff or watch television with its stacked nanoseconds of happy, healthy, glowing, well adjusted, perfectly complexioned children saturating the airwaves. It must burn, stab, strangle, eviscerate—perhaps even kill.

Their days must be long, if that word can even come close to describing the protracted misery of a minute’s passing in the absence of one so innocent and adored. My own days drag on caring for a child who we feed, bathe, hug, kiss, keep warm and dry and safe, though little more. It’s monotony at times, and yet completely incomparable to the plodding torment of these parents and families who’ve been robbed blind of their most prized possession.

But then my mind wanders back to the moon, that brilliant cup reflecting the suns rays so brightly that, even half full, it illuminates all that would be black in its absence. I think of those children who are gone from this world but not from this universe, and I see them too as tiny points of light, a twinkling star in the sky reserved for each one of them, and for us to delight in, rely on and wish.

http://www.trekworld.com/2012/11/23/mount-baker-moon-and-northern-lights/

12.19.2012

on bruises and black ink

Between the hours of 6:00 and 8:00 a.m. he pulled my hair, pushed off of my throat with the heel of his hand—his upper body weight behind it—and bit my ear. None of this Calvin does with malicious intent, it’s just the way he rolls. He’ll chomp on pretty much anything if it is in front of his mouth, and I’m waiting for the day when he starts to bite himself. I’ve heard stories of neurologically compromised children who engage in self-abuse; they punch themselves in the chest or the head, bite and scratch their arms, nick their corneas, but for us—for now—the only casualties appear to be Calvin’s caregivers.

In the therapist’s chair I lamented my bumps and bruises—both to my body and to my psyche—but my thoughts kept returning to the children of Sandy Hook. We talked about the twenty joyous little lives that had been snuffed out by scores of searing bullets. I hope it had happened quickly enough so that none of them had to suffer or witness their friends’ suffering, but in my mind I couldn’t see how. In a selfish stream of consciousness I spoke of my own joy and how little of it raising Calvin brings me, of how the scales of pleasure and hardship—worry, frustration, anger—are weighted like a stone compared to a feather. I told her, though, that joy isn’t the only redeeming quality in raising Calvin, but that having him has opened up realms to me that I might otherwise never have experienced—my writing, first and foremost. “I’ve always loved words,” I told her, remembering that my favorite book as a child was a thesaurus. I went on to consider that perhaps, in the past, I didn’t think that I had anything important to say with them. So I had stuck with what I was good at, the visual arts, my drawing, photography, designing and quilting, which I loved but that had never fed my soul.

In speaking with my therapist I discovered that my writing is much more than simply cathartic. “I think I help people,” I told her. I went on to describe what a beautiful art form writing is to me, how in my mind it’s another sort of visual expression. “I think of it like sculpting,” I said, and went on to explain that I build a framework, like an architect, then edit and shape the work, carving into it, adding on bits then smoothing them as a sculptor might with clay. As I fashion the piece I paint it with descriptive images, which perhaps transport the reader into my space, my head. I hope one day my writing will take the form of a book with delicately fibrous pages, jet black ink and a hard cover.

After a day of errands and walking Rudy the Dog, seeing my therapist and, most of all, writing, I am recharged, at least enough to endure an evening of possible frustration, hair pulling, shrieking and biting, but no doubt a smattering of smiles, joyous hugs and self-discovery along the way.

12.18.2012

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

12.17.2012

fear, dread and loathing

My son’s epilepsy has changed me, made me worrisome and fearful. In many ways it has shrunken me like a wool sweater in boiling water, shriveled my nerves into a tangled, crumpled mass of fibers. I sense that fear and dread in my posture, feel my shoulders cinch up around my neck as if I were pressing into a gale force wind. I feel my nerves bunch and knot around my bones. There’s a constant low drone in my head, my blood, like the nearly imperceptible but real buzz of a solitary bulb glaring in its socket.

I don’t remember being afraid much as a child, only at night on lonely walks down our unlit gravel lane headed home from Monica’s house. Fear quickened my steps and, as adrenaline fed fear, I’d launch into a full-out sprint round the bend in my driveway as if demons were swiping at my heels.

But I wasn’t afraid of scary movies, Hell or the end of the world. I wasn't afraid to sing solo in front of the entire school, wasn’t afraid to talk to strangers, go to the dentist, catch snakes and frogs, break up with boys, jump off of cliffs, swim past the breakers, sneak out of the house, drive ninety miles an hour, admit fault, endure pain, drop out of college, cold call, tell the truth, ask for help, backpack alone, explore foreign countries, converse with people whose language I didn’t speak, talk to the homeless, reveal my weaknesses, trust strangers, challenge authority, quit jobs, face adversity, eat food I didn't recognize, go to parties alone, move to new places or make new friends. I wasn’t afraid of any of it.

But epilepsy scares me. I’m in constant dread of my son’s next loathsome seizure, looking over my shoulder as if half expecting a lurking thug to whack me over the head. I jump at loud noises, cringe at Calvin’s odd behavior, flounder in angst and thrash in the obscure waters of antiepileptic drugs and their side effects that render my son a zombie-lunatic much of the time.

Because of epilepsy I never truly relax, and the fear, dread and loathing has, in some ways, become etched into my being, perhaps changed me forever. Though regrettable, I imagine this kind of fear and dread to be no less than a thousand-fold for the parents and families of the Sandy Hook Elementary School victims. And so I make my best effort to put things into perspective and to understand that my former state of total calm is little to have given up, at least for now; I still have my child and my child still has me, and for that I am eternally grateful, even if it's sometimes scary.

photo by Michael Kolster

12.16.2012

unfathomable

I sat down for coffee and tried to feed my son while reading the news ... the miserable, dreaded news. After breakfast we put Calvin into his bed, raised its safety panel and secured the netted canopy so Michael and I could take our showers. In the bathroom we turned up the baby monitor so we could hear him as we soaked our tired selves under hot water.

When Michael finished up he went to check on Calvin. Over the monitor I heard his happy greeting to our boy who, I assume, was kneeling in bed, his head pushing up into the netting. “Heeeeeeyyyyy, Kid!” Michael exclaimed in his usual playful way, “why don’t you lay down and take your finger out of your eye?” I imagined my little goofball poking his eye in its corner as he often does when he gets tired or when the antiepileptic drugs cause him headaches, visual disturbances or both. “Where’s your football?” Michael asked him, then likely fished out Calvin’s orange plastic toy from somewhere under the covers. All the while, as I expanded and unwound under steaming liquid, I heard the happy rise and fall of Calvin’s coos, giggles and excited hyperventilation.

I hung my head and regarded my veiny feet, my toes, and the rivulets running between them; imaged the water as blood. As I listened to Calvin play, my thoughts and smile turned south, drifting to the parents and families of the children who’d been so senselessly gunned down—at point blank range—by a troubled young man in Friday’s Newton, Connecticut massacre. With all the shit we have to deal with, I thought—Calvin’s seizures, the drugs, the sleepless nights, his painfully protracted progression—it’s nothing compared to the vortex of grief these families must be facing. These families are living a brutal silence, void of the buoyant patter of feet scampering around the kitchen, void of the cheerful din of forks poking through stacks of steaming pancakes, void of the sweet small voices emerging from excited little beings. These parents’ eyes will no longer feast on yawning imps rubbing sleepy eyes, their hands will never again tussle small heads, they’ll never feel the sublime weight of tired bodies in their arms, never feel smooth, warm bellies, kiss supple cheeks, pat the pajama’d bottoms of their innocents.

I say no piercing arrow, no knife, no stone thrown hard and fast could have caused such bloodshed—only guns. No weapon could have so easily inflicted such nonsensical pain and suffering on a child, a parent, a school, a community, a world—only guns—guns that shoot rapid-fire and rip through a crowd in minutes leaving no time to breathe and ask why?

The dreaded news was smothering, punched the breath right out of my lungs like a bullet to the chest. I want to take away their pain. I want to take away those minutes, that grief, that news. I want to take away those guns ... those miserable, wretched, needless, dreaded guns that—unfathomable to me—certain, perhaps impotent, individuals insist on making available to feel as though they are somehow free.

Flowers and stuffed animals of a makeshift memorial for school shooting victims encircle the flagpole at the town center Saturday in Newtown, Conn. Most of the shooting victims were very young. (Associated Press)

12.15.2012

wanderer's nightsong

Over all the peaks it is peaceful,
in all the treetops you feel
hardly a breath of wind;
the little birds are silent in the forest ...
only wait—soon you will rest as well.

Schubert, Wanderer's Nightsong, (text by Goethe)
English translation by Emily Ezust

photo by Michael Kolster

12.14.2012

darkness and silence

Everything has its wonders, even darkness and silence, and I learn, whatever state I may be in, therein to be content.

—Helen Keller 

photo by Michael Kolster

12.13.2012

past the breakers

Summers in the Seattle suburb where I grew up were gloriously warm and dry, contrary to what some might tell you. I’d cast a towel over the brittle yellow grass in my back yard, slather myself in oil and set my transistor radio close to my head. But when my family took trips to the coast, about three hours from our home, I’d leave the oil behind and bring an empty medicine bottle full of dimes for the showers, knowing how sandy I’d be getting.

On these trips my dad woke us early to go digging for razor clams. My brother Matt crawled out of his mummy bag and jumped down from the little shallow loft at the end of our trailer. I’d follow eagerly, shaking off the night’s claustrophobia having been hemmed in by my brother with only a few inches of headroom and a tiny window that barely opened. We donned cutoffs, sweatshirts, canvas sneakers and an occasional poncho, toted buckets and dragged our shovels carving swerving ruts into the beach. We trudged after my dad’s tall, thin figure—stepping into his footprints—and waded out to the sandbar, a long slice of beige a billion grains strong molded into wavy ripples like sub-Saharan dunes. In the frigid water our feet went numb and sand chafed our ankles raw. Our hard-heeled strides sent the clams asunder, one short squirt from their bivalves giving them away. Then we’d dig.

In the afternoons some of us flew kites and jumped off grassy bluffs into the dunes, others collected sand dollars and squashed bronze kelp heads. One time my brothers and sister flew a kite 1,500 feet into the sky, its heavy line sagging in a deep crescent, the kite a mere dot floating in the blue expanse. We listened to it hum in the wind, holding the whining string up to our ears. I was excited, but afraid to take hold of the kite for fear it would carry me away.

All excellent swimmers, we dared to stroke out past the magnificent breakers, then we'd body surf into shore and bury each other in the damp sand. The first time my brothers buried me I remember being surprised at the weight of it, of the pressure on my chest and the way I could barely move my limbs under its mass.

I had long dreamed of reliving some of these fond childhood moments with my own husband and child. In a blink, however, that all changed when Calvin was born with significant neurological problems, and more so when he started having seizures. And though my life is rich and wonderful, full of love and happiness, we’ve had to do everything very differently than we had hoped, had to relearn how to live our lives in the face of the grief, loss and hardship of a having a disabled child, like someone who must relearn how to speak after suffering a stroke, how to trust after being jilted by a lover, or how to walk after loosing a limb.

Two summers after my dad died I made a dear friend while living in San Francisco. We spent nearly every weekend together that summer, and into the fall, taking photos for his book on the environmental history of the Bay Area. He shared with me all sorts of stories about his native home, showed me hidden waterfalls and ponds with rope swings and wildflowers on mountainsides. On one of our hikes he told me about a day at the beach when he was just four. His father, who must have been a young man then, had ventured to carve a tunnel through the sand, not unlike the igloo my brother Matt and I dug out of a gigantic snowball once. My friend was watching his father burrow his way through to the other side of a moist sandy hill when it collapsed. His father was entombed, no way to get to him, and he died.

My friend’s life—his mother’s life—would never be the same again, like some train that’s been derailed, cars careening to one side, perhaps skidding off the edge of a trestle spanning a deep gorge, or slamming head on into the side of a mountain. It’s hard to say how a person perseveres through such adversity, except that we, as humans, are adept at relearning, at exploring uncharted territory, at daring to navigating foreign waters and at swimming strong out past the breakers where the waves are smooth and rolling and one can clearly see the horizon again.

Version originally published 12.13.11.

12.12.2012

far from the tree (video)

I've got this book on order: Far From the Tree by Andrew Solomon. At nearly 1000 pages, including notes, it delves into the lives of parents with extraordinary children. I have no doubt that I'll lose myself in it, and hopefully drown in the simple bliss of knowing that I'm not alone.


12.11.2012

bird by bird

For my friend Eee:

A few years ago my sister gave me a beautiful strand of cloth birds she’d brought back from Asia. The dozen or so resemble hummingbirds and are hand sewn, cut from colorful felt. Tufts of yarn serve as wings and tails—beads for eyes—and each is wrapped in a metallic gold ribbon harness. The cord itself is adorned with various beads and shells and a tiny brass bell tied at the bottom tinkles happily when disturbed. The string hangs from a tack beside Calvin’s bed just to the right of the light switch. When I turn the light on I sometimes jingle the bell—inadvertently or not—and it makes me smile.

When she gave it to me I pondered its symbolic meaning. At first I imagined it like a calendar, similar to the bird-themed oblong felt ones that my deaf, autistic uncle embellished with sequins then sent to us every Christmas when I was a kid. And then I thought of the book Bird by Bird, by Anne Lamott, that I’d read several years ago and from which this passage comes:

Thirty years ago my older brother, who was ten years old at the time, was trying to get a report on birds written that he'd had three months to write. It was due the next day. We were out at our family cabin in Bolinas, and he was at the kitchen table close to tears, surrounded by binder paper and pencils and unopened books on birds, immobilized by the hugeness of the task ahead. Then my father sat down beside him, put his arm around my brother's shoulder, and said, "Bird by bird, buddy. Just take it bird by bird."

We have to think of our life with Calvin in much the same way, taking each day, each challenge, each disappointment, each monotonous, worrisome, fearful minute one by one. To do it any differently would be too great a task, too daunting.

Sometimes I look back at past calendars. In any given month a dozen or more days are blocked with fading orange highlighter—like a quilt—noting Calvin’s seizures, marked with large black dots flagging tonic-clonic ones or strings of heavy “Os” for partial complex ones. Following are smeared inky descriptions of each; how long, how violent, if he stopped breathing, if we had to give him the emergency rectal Valium, if we called 911, if we went to the ER, if he was transported to the pediatric intensive care unit in Portland. Each month is stained with bright green or yellow swathes and scarred in sharp black letters tagging changes in Calvin’s multiple medications, doctor’s appointments, blood draws, illnesses, therapies and nurses’ visits.

And when the enormity of our situation becomes too much to bear—when I don’t know if I can change another dirty diaper, hear another manic scream, struggle to give another medicine, agonize over another seizure, endure another sleepless night—I run my hands down that colorful strand of plump cottony birds and think to myself, bird by bird, Christy, bird by bird.

Originally published 01.23.12.

12.10.2012

back in time

Every weekday morning, after I put Calvin on the bus and slug down my cold coffee, I take our dog Rudy for a walk. Often, we head into the stand of trees that borders the vast athletic fields near our home. We amble along a wide path now muddy and strewn with autumn leaves, listening to the din of a lone woodpecker high in a long-dead tree. A loose chain of houses lines the path, their back yards spilling into the clearing, some fenced, others not. As we approach, one house in particular begs me to pause. The structure, a brick ranch style home with a dark shingle roof, reminds me of the house I grew up in, lived in from the age of two until I turned twenty. As I gaze at the house my emotions become visceral, as if I might witness my father walking right out the sliding glass doors onto the sloping lawn, or perhaps my mother, wearing her patchwork apron, ringing the patio dinner bell. I see this house and I become a kid again, a tomboy clad in dirty hand-me-down Levi’s, rubber-toed sneakers, a t-shirt and a worn out hoodie.

Living on a secluded lot with few neighbors, I considered my house and the rocks and trees surrounding it as my friends. I had named the twin fir trees flanking our gravel drive Huey and Louie. A born tree climber, I’d squirrel my way up through the spokes of their sappy branches and straddle myself far above the roof gazing at the Seattle skyline and, on clear days, the Olympic range beyond. On summer days I’d mow the lawn and feed handfuls of clippings and wormy apples to the neighbors' horses. I’d lay for hours on a threadbare towel worshiping the sun and surveying images in the clouds that passed overhead. I’d nap in the supple shade of a plum-colored Japanese maple as cherry blossoms floated across my face. In the remnants of a rotted-out old cabin in the adjacent wooded lot I’d dig for old bottles and other treasures. What really captivated my attention was studying ladybugs, dragonflies, slugs and bumblebees. I’d fashion daisy chains with dandelions and buttercups or make a blade of grass sing between my thumbs. In the still of afternoon I’d braid my hair in pigtails, weave colored plastic strips into a square-ish lanyard, plait a bracelet of white string like I learned at camp, one I’d wear on my brown wrist for the entire summer and well into the school year until I had to cut it off it got so dirty. When it rained I made mud pies, stomped in puddles, hid in the hollow arch of trees, watched earthworms emerge from the grass only to be gobbled up by quick, red-breasted robins.

Somehow, standing there on the wooded path facing some stranger’s brick ranch, I yearn to step foot into the yard and go back in time, to a time when I hadn’t a care in the world save the burden of simple chores, back to a time when I didn’t fret constantly over a wordless, disabled child with a rampant seizure disorder. I want to bring Calvin back with me and introduce him to my father, my mother. With net in hand, I want him to chase butterflies with me—catch and release—and frogs just the same. I want to lay with Calvin on a ratty towel sinking into the grass and just be—stillnot chasing around a boy on the end of a harness who never stops moving, not long enough anyway to gaze at the sky, not long enough to regard a bird or smell a flower or pause simply to soak it all in, a boy who I’ll never be sure can use his imagination at all much less consider the rocks and trees or the faces sculpted in clouds.

12.09.2012

intellectually disabled

She told me that in order to perform the test my child would need to be able to point to an object and move it, under direction, from one location to another.

“Calvin can’t point, at least not without hand-over-hand assistance,” I told her, knowing full well that pointing is a foundation of language, “but he gestures for his sippy cup.” I went on to explain that Calvin isn’t capable of carrying an object under direction, only carries something if it's also in his mouth, like his sippy cup or a favorite toy that he likes to chew on. I told her that Calvin, who is eight, can’t speak, has little receptive communication and almost no expressive communication. He knows sign language for one single word—hug—though only signs it from his highchair. He utters “uh-uh,” which I think means “mama,” but only says that from his bed.

The psychologist said something like, “Well, then we will not be able to give Calvin the test since he is so significantly delayed.” Said test was to determine if Calvin is “intellectually disabled,” a new, apparently more politically correct term for “mentally retarded.” But even without the test, it's the undeniable, sorry truth that he is.

When Calvin was an infant-toddler, friends and family used to send or bring him toys. He received books and plush animals, puzzles, choo-choo trains, fire engines with bells, stacking blocks of all kinds, wind-up cars and bathtub toys. Upon receipt of these kind gifts I’d glance at Michael and half smile, though my heart winced. Calvin wasn’t interested in—or capable of—playing with any of them. Once our loved ones had a chance to spend some time with Calvin and witness his severe deficits they ultimately visited bearing toys such as rattles and knobby balls, light-up music-makers and the like. They watch my eyes water as I tear the pretty paper off of their gifts (Calvin can’t unwrap things either) and can clearly see my deep appreciation of their thoughtful choices.

Calvin still cannot drink from an open cup by himself or place his sippy cup right-side-up on the table. He can’t eat with a spoon or tie his shoes or put on his socks or button his shirt or pull up and zip his pants or use the toilet or walk without falling or ask for a snack or tell us he’s cold or hungry or carry a lunch box or put on his coat or brush his teeth or push a toy car or stack a few blocks or point at a doggy or run and play with a child. I don’t think I need a test to tell me that my son is intellectually disabled. What's more, no test can ever establish what is inside that sweet little auburn head of his that endlessly asks us for hugs.

photo by Michael Kolster

12.08.2012

brain surgery

One of my regular readers who has epilepsy, a college student, wrote in kind agreement with me recently about the things people say—seemingly innocuous remarks—that cause us to pause and consider how strange our lives are in the face of living with epilepsy. She said:

During my freshman year when I was deciding whether to have half of my right temporal lobe removed, two different people asked me if I was all right (maybe my once-a-week trips to Boston, bloodshot eyes, or piles of make-up work in the 24-hour room at the library were giveaways.) On both of these occasions I didn't really want to go into it and responded that I was just kind of stressed out about this or that paper. "You'll be fine, it's not brain surgery," they responded.

Sadly, for some people with epilepsy, brain surgery is a serious, risky reality—often a last resort—and even then, sometimes it doesn't pay off.

Little Bennett's brain surgery

12.07.2012

slash the 'stache (video)

This, in honor of David Axelrod's epic sacrifice in his effort to raise one million dollars—within one month—for CURE epilepsy research. They made their goal and his 'stache was slashed today on MSNBC's Morning Joe. As I watched a shining straight razor devour his forty-year-old lip rug I found myself curling my own upper lip down, I suppose in some act of solidarity.

In case David and Susan are mourning the loss of his moustache, I have included this humorous video. We can all learn something. There's still hope, David. Godspeed.

12.06.2012

beautiful despite all the rest

Sometime within this last year while I was surfing Facebook I came across a sepia-toned portrait of a young woman, her downcast eyes highlighting thick, dark lashes, her forehead taped with EEG leads. Scripted across the top of the photo were the words, “My epilepsy makes me beautiful.” As I read the line my heart sunk and a storm of a thousand thoughts whirled in front of my eyes:

No it doesn’t! You are beautiful without epilepsy! Epilepsy messes you up! Epilepsy robs your health, drugs you out, fries your brain, risks your life, steals your memory, makes you fall, drags you down, limits your abilities, hurts your family, costs you money, deprives you freedoms!

And although I don’t have epilepsy—my eight-year-old son does—at the same time I tried to understand what she was saying. Perhaps she was trying to take back what epilepsy had stolen from her, trying to say that living with epilepsy had made her a stronger person. I have no doubt that it has. But to give epilepsy kudos, to somehow exalt it, to place it on a pedestal and praise it as some sort of positive entity, some beautiful characteristic, literally made me feel ill.

I immediately jumped on the phone and called my friend Susan. We exchanged horror stories of our drugged-up children going haywire because of the anticonvulsant medications—my son, at times, a spinning, flailing maniac; her daughter an enraged teenager tearing at her mother’s clothes—and we grieved. I mentioned my son had also been a zombie and how, if it weren't for all of the drugs, perhaps he'd be walking by himself, maybe even speaking. We talked about all of the “what ifs” and how things might've turned out differently if only for the epilepsy. I told her about the photo I’d seen online and how it made me angry and sad at the same time. I told her how I thought it might've been a teenager’s effort to be seen as “same” instead of “other,” to not be society’s outcast, to not be feared, marginalized, shamed. It was her effort perhaps, as it is for so many, to diffuse the power of epilepsy, to show that people with epilepsy can lead normal lives just like the rest of us.

But for so many millions worldwide, whose seizures are not controlled with medications—like my Calvin—or whose seizures are controlled but only with use of a debilitating amount of medication, life is anything but normal. It is painful and blurry and stifling and controlling and nauseating and chronic and scary and limiting and hopeless and sickening and hurtful and consuming and nagging and dreadful and unpredictable and worrisome and lonely and ... incurable. One thing epilepsy is not is beautiful, nor does it make one beautiful. Epilepsy is nothing but vile.

Instead, I would argue that the ones with epilepsy are already beautiful, that the souls who suffer epilepsy make themselves beautiful despite all the rest.

12.05.2012

two ships passing

It has become clear to me during the last few conversations with my mother that she no longer understands what a telephone is used for (we have to explain it to her) and, though she is familiar with dogs, she doesn’t know what a cat is. Words continue to escape her and yet—thankfully—she doesn't appear to be too bothered and, for now, maintains the capacity to understand quips and jokes.

I imagine Mom and Calvin like two ships passing in the night, trading places, though Calvin will never have the intellect that his grandmother once enjoyed. At this point—my mom eighty-three, my son eight—they both need assistance walking, they both wear diapers, they both need supervision while eating and bathing, they both require spotting while going up and down stairs and, though Calvin has yet to utter his first word, my mother is losing her vocabulary daily.

I am reminded of Martin Amis’ novel, Times Arrow, in which the main character's life goes backwards. Like Benjamin Button, he gets younger and younger with time until becoming a mere infant, his life eventually snuffed out in his mother's womb. Just like Mom, I think. Some day, likely in the not-too-distant future, like a baby she will no longer have a memory, then she will simply disappear into the womb of mother earth.

But fortunately, my mom will live on in me and in Calvin. We take her with us—put her in our pocket, to use a friend’s phrase—in the things that come to us naturally by way of our shared biology: vivaciousness, lightheartedness, sense of humor, optimism, kindness, affection, sprightliness and warmth. I clearly see all of these qualities in my boy, though he has no spoken language, and I am amazed and delighted at how much he takes after my mother. I’ll be forever graced with these two lovely ships passing in the night, even when they disappear into the fog.

Mom and Calvin, 2006

12.04.2012

cyanosis

Cyanosis: a blueish discoloration of the skin (here, the fingers, toes and lips) resulting from poor circulation or inadequate oxygenation of the blood.

Cyanosis: what happens when my son Calvin doesn't breathe for over a minute during grand mal convulsive seizures that last upwards of three minutes.

cyanosis

12.03.2012

sonogram

The technician squirted a blob of warm ice-blue gel on the end of her wand, which, like most of the equipment and furniture in the room, glared a sickly grey. She wore thin sterile gloves that swooshed and crackled like powdery plastic as she navigated the wand over my belly, grasping it as awkwardly as a kid wielding a gigantic marker. Michael held my hand.

The fuzzy black and white images on the monitor looked surreal: a ghost-baby appearing inside some magic mirror illuminating the darkened room. There he was, our son, a seemingly fully formed, 32-week skeleton-of-a-baby cradled in my 40-year old womb, a tiny diver in mid-tuck. The grainy window-wiper swath morphed amoeba-esque into a dark glittering mass like a moonless night sky. Then, my child reappeared, his limbs connecting points of light like stars in some strange constellation. I thought back to his eighteen-week sonogram, the one where his limbs moved like little waterlogged sticks in a pond. One leg kicked out then drifted back down to rest on the soft oyster of my uterus. There's my little pearl, I’d thought. Though Calvin moved very little during that sonogram, when he did his gestures had the eerie quality of a marionette. I remember thinking how odd he looked—practically fake—like one of those lazy cutout cardboard puppets fixed with loose grommet joints dancing on the end of a thin dowel.

I recall being mesmerized by my pregnant friends’ bellies, their babies visibly shifting under tight sweaters like aliens, little feet skating around, sometimes kicking with such vigor I feared they’d punch right through. Perhaps it’s just too early, I’d think, trying to justify why my baby didn’t do those things. My husband never once felt Calvin moving inside me; his subtle rolling always abated before Michael had time to lay his palm on my belly. At five months I was barely showing, could still wear my jeans, just unsnapped at the waist. I tried my best to deflect my friends’ comments about how small I was, though I couldn’t conceal my nervous blush. Did they know something I didn’t know? A few remarked as though they were somehow jealous of my small baby bump, which I thought was strange and perhaps some perverse product of society’s distorted image of beauty. I wondered if others were worried for me.

As the sonogram progressed I kept my eyes fixed on the peppery screen in a state of trance as though I were watching a poltergeist. Little did I know that Michael was eyeing the technician’s sober, wide-eyed gaze. She remained unusually silent throughout the entire exam, then quietly exited the room to show the films to the doctor.

A few minutes later in walked a somber form. She was tall and dressed in a full-length black knit dress and high-heeled boots with a stethoscope slung around her neck. Her hair stood short, gelled and spiky, thick black mascara caked her baggy eyes. She looked to me as if she’d stepped right out of a Tim Burton film. With no show of empathy, like some steely robot, she shared with us the grim news in a low, monotone voice, “Your baby’s brain’s lateral ventricles are enlarged. This is something you need to worry about. It could affect I.Q. Come back in four weeks.” I wanted to punch her, take her down and knock the wind out of her, make her struggle to breathe like she’d just done to me. But, frozen by the news, I couldn’t move, couldn’t conjure any words to pass my thickening throat. My heart imploded, went up in a puff of smoke. The fumes stung my sinuses and reddened my eyes, tears spilled into my lap as I hugged my gut with one hand, the other in Michael’s tight grasp. What now? I thought, what now?

12.02.2012

unchanged

My hours blend into days, the days into weeks, weeks into years, and though the time passes, little changes for our eight-year-old boy. It’s as if he were standing alone—if he could—in the center of a time-lapse landscape video, clouds streaking by like ghosts, days and nights flickering past in blinks of time as the sun and moon see-saw in the sky, as long shadows creep across the landscape before receding into the night. The seasons pass; autumn leaves die and fall to the ground, snow smothers everything then spring begins to emerge in a thickening of green and bloom. But amongst all this evolution our Calvin remains mostly unchanged, like a static pillar of rock in the center of the beautiful scene, time flitting busily by him as he stands fast, the world seemingly unaware of his presence if not for his shivering form.

But I am aware ... I know. My boy is changing. The top of his auburn head reaches just about to my solar plexis. His face thins out, his teeth grow in, his limbs lengthen into smooth slender straps of muscle and skin, not much fat save tiny morsels smaller than a mandarin orange slice just at the back of his knees. Sadly, Calvin’s physical changes underscore his lack of cognitive and developmental changes. He still cannot walk without assist. He cannot utter words. His expressive and receptive communication abilities are practically non-existent. He can reach for us if we are near, he can try for his sippy cup if it is next to him on a table, he can sit up and kneel in his bed and pound the safety panel to beckon us, he can kiss our faces if our heads are touching.

But Calvin still crawls around the house like a little baby—coos like one too—drools as much if not more than a teething infant. He plays with his toes on the changing table, he puts everything into his mouth, he still struggles against gravity in negotiating the stairs, but he’s getting better. And although we have seen some progress I can count the times that the tulips have come up then withered—come up again then withered—yet Calvin is still doing some of the same things he’s done since he was two, with little to no improvement.

And I know deep down in my gut, where it's dark—sometimes heavy, sometimes hollow—that this virtual plateau in Calvin’s development, the one that keeps him at some twisted place between infant and toddler, is primarily—if not entirely—because of the seizures, the drugs and their side effects.

But just as the Grand Canyon’s impressive erosion secretly continues on for millenniums, just as its river snakes and meanders, slowly carving its own story into the stony facade while the clouds gather and shower infinite rains that sculpt and smooth the plateau—the sun and moon rising and setting over its face—just as these changes are imperceptible to the naked eye, so remains Calvin; mostly unchanged, though changing.

But our boy is enduringly beautiful with a capacity for love bigger than the broadest canyon, the widest river, the deepest, black-green sea or the expanse of cloudless sky that holds forever in its infinite palm.

Version originally published 12.29.11.
photo by Michael Kolster

12.01.2012

what if

What if religion was each other?
If our practice was our life?
If prayer was our words?
What if the temple was the earth?
If forests were our church?
If holy water—the rivers, lakes and oceans?
What if meditation was our relationships?
If the teacher was life?
If wisdom was self knowledge?
If love was the center of our being

—Ganga White, founder of the White Lotus Foundation

photo by Michael Kolster