(broken) promise

Shiny, taut and round like a basketball: my pregnant belly. Old photographs of it make me sad, particularly the one taken a few days before Calvin's birth. As I regard the picture in which my hand is placed flat atop my live melon, I can imagine Calvin cradled inside: our four-and-a-half pound, 34-week old fetus that had held so much promise for us just two weeks prior.

At that point, I carried what I thought would be a healthy baby who I’d deliver naturally, who’d have near perfect Apgar scores, a robust appetite and who we’d excitedly bring home days later to a house full of sunshine, plush and joy. Our boy would be sitting up by summertime, propped in soft grass or on a sunflower blanket in warm sand at the water’s edge. Perhaps by autumn he’d be crawling and within a year he’d be getting around on foot, playing with kitchen gadgets, exploring his world, riding on his father’s shoulders and maybe even saying his first words.

Our child would go on to devour the world with a fierce curiosity inherited from his parents. We’d teach him to be humble yet assertive, gentle and kind and confident. We’d take him camping and fishing and swimming in lakes. He’d have lots of friends who I’d watch him play with as I gazed out the kitchen window. We’d teach him the joy and benefit of reading. Perhaps he’d pick up music or art or sports. He’d have sweethearts and heartaches, psych-ups and letdowns, hookups and breakups. We’d trust and empower him and teach him to be compassionate, open-minded and honest. He’d love others, even if they were different from him—perhaps more so—and he’d grow up giving back to the world, making it a better place.

All this promise was contained in the small warm globe held tightly in my body. I felt it, dreamed it.

Then, in a blink it was crushed, toppled like a house of cards, our delicate nest of dreams spirited away in a single wretched moment. Now, I see only ghosts of the dream, brief moments, often months apart, when Calvin walks requiring little assist, or when he might look into my eyes and appear to register—visually—who I am.

Yesterday, as Calvin teetered along in front of Michael, who held his harness tightly, I watched on from inside the North Creek Farm cafe waiting for our pastries. I tipped my head against the window peering out onto a frosty backyard strewn with picnic tables weathered grey from rain and winters plus a half dozen laying hens sprinting to and fro. I imagined Calvin letting out his birdie noise and I thought of how much he looked like a little chicken out there. My throat tightened when I saw a faint smile creep across his face as he navigated around tables and benches in the grass of the unfamiliar yard.

We moved on to a nearby beach where the sand was too soft for Calvin to walk in with any skill, even while holding our hands, and further hindered by his constant contortions attempting to stare at the sun. So, we quickly abandoned the venture. As we hobbled hand in hand back up the dunes to our car with as much difficulty as pushing a wheelbarrow full of rocks through deep sand, I glanced back at a family with two small children half the size of Calvin running and playing as free as birds and—again—thought of the promise that, to us, will be forever out of reach.

lose one's life

One must lose one's own life in order to find it.

—Anne Morrow Lindbergh

photo by Michael Kolster

tsunamis and tears

I see it coming for days. The inappropriate laughter. The poor balance. The extreme hyperactivity. The hair pulling, teeth grinding and head bonking. Three days before it arrives, in large caps I write my suspicions in the journal.

I feel his heart like a little fist pounding in his chest so hard it’s as if it’s strapped on the outside. I make a mental note (one of many). One moment his hands are icy cold, the next, hot and dry. I scoop him into his high chair and buckle him in ... then I see the fiend approaching like a monstrous tsunami just offshore—the calm before the storm.

His gaze drifts upward and to the right as if pulled by some impossible gravity, his mouth agape in an expression I can only describe as fear or dread. As the words, “here it comes,” spill over my lips it’s as if I’ve cast a spell on my boy, and he launches into the seizure. We go to the green couch, always the green couch with the tan pillow—the seizure couch—its pile of clean laundry swept onto the floor to clear a space for my boy. He is stiff and arched and pale and dusky and for a brief, stolen moment he desperately reaches for me as if to say, Mama, make it stop, but I cannot.

I lovingly coach my boy through the abyss, uncertain if he can hear me under the weight of the surf. Eventually, the color bleeds back into his face and he’s able to chirp, “Uh-uh”—Mama. When I cradle his head in my palm to receive his seizure meds I spot something I’ve never before seen: a tear. “We all have tears,” Michael says to me later. And I know that I have not shed my last one.

friday faves - adaptation

A good friend who I haven’t spoken with for a long time wrote to me recently. I think of him often and wonder what life is bringing his way. He mentioned how he wanted to talk with me but that, in reading my blog, he felt as if his problems were petty compared to what I was facing on a daily basis. I'm not sure.

If I’ve learned one thing since Calvin’s birth—and more so since his seizures began—it’s that we, as humans, are incredibly adaptive creatures. I remember, before Calvin was born, driving with Michael along a winding road on the Bolinas Ridge just north of San Francisco. The narrow road snaked through densely wooded glens broken by pristine, wide open seascapes and rolling, golden hills punctuated occasionally by gnarled oak trees. While listening to the radio, we were not only captivated by the scenic beauty, but by a story about happiness. The story described a study that had revealed findings about human adaptation. It explained how—even in grave circumstances such as incarceration or physical debilitation—after an initial adjustment phase, individuals ranked their level of happiness on par with a control group. It seems it’s well within our ability to adapt and be happy amidst less than ideal circumstances.

I will say that life with Calvin has been grave at times. It is true that grief has choked me, frustration has frazzled my nerves, nights are often sleepless and worry abrades my spirit. But, so has raising Calvin been the most uplifting and rewarding adventure of my life. To love this child—who rarely looks me in the face, who cannot express his feelings in words, whose dreams I’ll never know—and to have this child love me back, unconditionally, is to feel an emotion impossible to adequately describe, but one that brings me joy and happiness beyond measure. I believe that my life, especially since Calvin, is a reflection of nature in its ability to adapt and find ultimate balance—a path not unlike the meandering road with its dark, obscure hollows juxtaposed with bright expansive heights.

So, too, has the strain of raising Calvin heightened my sensitivity to the burden of others. I imagine that floating down a raging river through coarse, magnificent rapids might feel treacherous to some, while for others, the tempered water rippling at the eddy’s edge might prove terrifying. Both realities are true. Equally, no malady is petty or shameful—none to be belittled by another—and no accomplishment is unworthy of praise. As humans, we all suffer hardships and we all celebrate triumphs, both large and small alike, and through this constant ebb and flow between despair and rapture—and because of the compassion and empathy of others—we adapt, we find balance, we persevere.

Originally published 12.05.2010.

eclipse

Often, I am humbled by stories that friends and strangers share with me of their own struggles in life, of their sick children, their grief, their despair and their catharsis. Some stories are so touching that I feel I must share them, to squeeze every last drop of their sweet juice for my readers to taste.

This was something I received a few weeks ago by a woman I went to school with, a woman I hardly know and yet someone who I feel deep fondness and affinity:

I am in tears reading your post, as I often am. I cannot pretend to comprehend the difficulties you have faced and will continue to face minute by minute, day by day. But I have some understanding of being lost in the sea of despair and at least in that regard you are not alone.
 
She shared with me some dour news about her child and went on to say:

The grief has been overwhelming and consuming. It's like a sinkhole that opens up and swallows you whole when you least expect it ... I am hopeful she will continue to improve and will find the right medication that will allow her to resume her life and find some peace.
 
In the meantime I have decided to view this as an eclipse. The sun is still out there shining, what we are experiencing is a temporary loss of light. I try so very hard to hold onto that thought until the sinkhole opens up again and I descend into grief.  

Then she signed off with the most loving words—words that I want to tell everyone out there who is struggling:

Sending you love and much light.

photo by Todd Olmstead

seti and me

I see my face
in hers and sink into
her familiar form
How many years gone by
I can’t say

She naps on
warm terracotta tiles
The slim bend of her elbow
shading closed
brown eyes

Mom seems
to recall her face
even after all these years
Then, smiling, reaches up to 

pull her in

Like a dream
the hours pass
We hold hands, walk arm in arm
laugh until we cry
Embrace

Cool drinks
chase spicy wings
the sun dissolving behind
clouds and masts in a
glass pool

A steel horn
silk voices, strings and drums
feed our hungry souls
move lithe bodies
sweat and burn

Bellies up
to a granite bar
like in olden days
Hot espresso, bitter chocolate, comedy
Reminiscence

She asks
after my boy
Was she the one who told me tenderly
that he is a

gift?

In bed
our toes touch
We talk and jest about forgotten boys
then fall asleep saying
I love you

my dear friend Seti and my mom

be aware and share (video)

Sitting on the plane home from San Diego today—next to a woman with epilepsy—I am reminded that it is international epilepsy awareness day. Awareness is the first step towards funding for critical research. Epilepsy is not a benign condition where you take a pill and everything is okay. Three million Americans—many of them children like Calvin—and their families suffer from epilepsy. One in twenty-six Americans will be diagnosed with epilepsy within their lifetime. Statistics for the rest of the world vary with the most numerous and often severe cases existing in developing nations where treatment is difficult and costly to obtain.

This video may be difficult for some to watch, though important for understanding the true nature of this heinous, pervasive, misunderstood, neglected disorder.

Ask yourself, what if this were my child?

Please share.