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Cover art: Detail from an oil painting by Stella Elliston “The Green Rivers”

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“Perceptions are portraits, not photographs, and their form reveals the artist’s hand every bit as much as it refects the things they portrayed.”

Nothing stays still. The seasons change, children turn into adolescents, and they keep going. The landscape I see through my window today is tranquil and comforting while all the years I was living the moments of Ezra’s birth, life and death, this landscape was red hot. Gazing out on it now, I see that the colors have become cooler. There’s less flaming orange and red, and the edges of everything have softened.

I have written from many vantage points—from the heat of the moment and from the cool distance of time. Who was I writing for? Why was I writing? When I wrote in a waiting room at a hospital while Ezra was in surgery, I wrote to calm myself. It was medicine. When I wrote during the early days after Ezra’s death, I wrote to ease my pain. Writing then was like flipping the spout of a steaming kettle when the shrieking sound lets you know that the water’s boiling inside it. I’ve been a translator, chemist, alchemist: pain into words, grief into communication. Words released the pressure inside me, and words made the searing moments something I could describe and share.

Mostly, I wrote to capture Ezra’s essence, to hold onto it forever and ever—as long as I’m here. We dug and planted a tree for his ashes and now I dig and plant with my words – to give him his place. Gazing out at the landscape, I look over all of my words. This story lets me share that view. Even though it is heartbreaking I know now that it is not the kind of break that needs repair; heartbreaking, like nut cracking...to be opened.

When Ezra was lowered into the bathtub as a baby, he kicked and sang. I swished him back and forth to his great delight then afterward, I wrapped him tightly in a big towel, like a cocoon. He loved it: movement, water.

Later, on hot summer days, we often descended down the craggy hill to the Green River. All of us: Matthias (Ty), Ezra, Zoë, and Zach (ages six, five, four, and two). A big little tribe, armed with towels, seeking the thrill of the frigid cold water of the river that laces in and around our little town in western Massachusetts. Those waters carry the living memory of the long cold winter months, even when summer comes. In early June, a stubborn will and a touch of madness urged me on. I was not to be held back. Handicapped? Phooey. We will ALL go to the river, though Ezra was an armful at this time—his long skinny limbs making an awkward fifty-pound bundle. We pulled up along the side of the road and unloaded. Yep, down we trudged, Ezra in his diapers and cotton short shorts and everyone else, including the dogs, pushing to be first, clamoring down the hillside. Ezra will experience everything the way we all do; whether he likes it or not! When we were all settled on the muddy bank of this Huck Finn rural scene, I told Ezra, “Get ready, buddy, you’re goin’ in.” Holding him in my arms, I dipped his legs in first. A sharp big in-breath followed. I was always taken aback, even though I know it’s coming. Then Ezra’s lips pursed into a tight “O,” a look of alarm and red alert in his eyes. We all knew this look well and it made everyone giggle. I knew his expression would eventually relax and give way, like an ice cube melting or a passing dark cloud that blows past to reveal the embracing sunshine. When Ezra smiled, that is precisely the feeling I got, a radiant sun, warming me from the inside.

I am sitting in the waiting room, bracing to hear how Ezra will emerge from surgery. An hour ago, I shook the hand of the surgeon, so strong and outgoing. He was all muscle, with a ruddy complexion and eyes that pierced out into the world with an alarming intensity. “What’s really the story here?” he asked me. I felt halted, wanting to say the right thing that would make him do the right thing. After stammering, I plunged in, it felt just like the second before diving into the Green River, into the numbing cold water. I explained the blockage that happened after they routinely changed the trach—ah— last Thursday—was it? They jimmied the trach to increase the airflow.

“Well,” he began, “maybe we can put a longer trach in and bypass this growth, ‘cause if you start to cut it away–it may bleed and then.” He trailed off and I quickly interjected an, “Oh, no” or a, “Yes, yes,”—something to toss us over this ditch in the conversation, and we right away returned to the idea of the longer trach that would bypass the obstruction. He outlined the steps as he foresaw them. “The procedure might be quick, or you might have some decisions to make.”

Karen, the nurse, wheeled the giant bed to the elevators and down the hallway. Turning to me she suggested I get a bite in the cafeteria. “They have good Caesar salads,” as if that would uproot me from where I stood.

This morning I told Ezra I loved him so many times. We had one of our cheek-to-cheek laughs, a couple actually. I rest my cheek on Ezra’s, and my mouth is aimed at his ear and then I let my love for him and my joy for him erupt into conspiratorial chuckles, intimate chuckles and they build. This is such a rich ritual, so often repeated, so dear and familiar. My eyes are warm with feeling as I write these words. And then I feel the muscles in Ezra’s face contract and I know we are on. I take a peek and sure enough, there is the irresistible smile and light sparkling in those eyes. When a blind person smiles with their eyes, it has the power to warm the soul, maybe because the light rays out from their whole body and not just from the eyes, rays of light beaming out in every possible direction.

Then we heave and jiggle up and down in laughter, cheek-to-cheek, passing deep, unspoken meaning between us. Understanding and intimacy. That is when I feel the most happy and at peace with my Ezra. He sometimes laughs out loud and his whole body shakes. I like to think we are laughing at the world together in these moments, laughing at being “handicapped,” laughing at the hospitals and all the surgeries and all the pain, all of it together. Then it erupts again, builds and finally quiets down until we are both ultimately satisfied and the joke has been thoroughly understood and thoroughly enjoyed. Finally all those dark brown thick curls cascading onto the pillow rest quietly.

We had a very good time this morning. I lengthened Ezra’s arms, then his legs, and we moved in rhythm, up and down, lengthening and stretching, crisscrossing arms and then legs. I accompany all of this with sounds. All of his intensity and attention shoot into each leg and they tremble with effort, wanting so badly to take hold of those limbs, control them and perhaps show me he can do it. All this fierce effort for so little movement. It could make you weep if you compared it to a young man of 17, . . . oh . . . playing basketball running gracefully down a court. But I don’t. And so it makes me ripple with joy because it is sheer heaven to Ezra.

Ezra, just being himself, gives total permission to not ever do that—compare. It’s not necessary. Some time has gone by as I write here in the waiting room of the hospital. My plan was to become so engrossed in the act of writing that I could avoid the anxious, restless fingers of the unknown and the dreaded as they slip into my thoughts. They are, however, sneaking in. The plan is not working.

Last week I said to my husband, “Pancho, the one thing that we must cultivate is equilibrium.” Since last May, we have been on a daredevil rollercoaster, each change in Ezra’s health and circumstances as unpredictable as the jolting 90º turns to the left, then the right, while careening straight down to earth. Yet, there is persistent optimism, a forever positive and hopeful outlook that is always there, waiting in the wings for the least bit of a chance to make an appearance center stage and once again, take over the whole show. So, my hope bubbles up around this little chill of anxiety. My hope is that Ezra has a well functioning trach put in and that we find a place close by that can meet all of his medical needs, and that we can get him outdoors to enjoy the elements, and that he is comfortable and can horseback ride and that he will have a full life for a boy with a trach in a wheelchair. The sky is the limit. It could happen.

But those cold thoughts of dread begin to assert themselves . . . and I write. We had a good morning. I told him carefully about Zach, Zoë and Ty, as well as Lucy and Sampson, the dogs. How they are all waiting for him. When is he going to come home and visit? The dogs want to lick his face. I see over and over again how Ezra’s nurses and caregivers adore him.

One of the nurses, said, “Oh, you can turn him on his side. He loves it. He was on his side for four hours last night, and he was cracking up. Right, buddy?” And just then he was cracking up. Ezra, when he graces you with his smile, his laugh, his interest, is anything but handicapped.

Yesterday an acquaintance said something significant to me, after I complained about my not being able to write about Ezra in spite of my longing to record his life. We sat underneath a canvas tent in a glorious Connecticut landscape at a July 4th pig roast. The beauty of the view was inspirational. Our conversation flowered into questions about writing and the creative process. I whined about not being able to “start” writing and she said, “Wait until you can’t stay in your skin without doing it, then you will start.” I am now at that point and so I begin.

I begin with an ending. Ezra died November 20th, 2003. He is all around me now as I listen to the wind. The wind was his favorite nature experience. He half closed his eyes, turned his face to the wind and smiled an open-mouthed and ecstatic smile, intoxicated by the rush of air and the possible chance of it stealing his breath away for a few seconds before he could take a gulp to breathe. That was, in fact, his body’s final failing—his lungs. They were unable to function towards the end of his time here. His scoliosis, the exaggerated curve of his spine, was crushing his lungs. The struggle to breathe belonged to both the beginning and the end of his time on earth.

When I knew that his time was limited, really knew it, I spent a long time burrowing into his hair and neck, taking in his particular smell, feeling his smooth, soft skin. Inhaling his essence, greedily holding it still in my mind’s eye, examining it with my most focused attention so that I would never, ever forget it. After taking him in with all my senses and my heart’s most awake intelligence, and drawing in his essence, as close to my own self as I could possibly get, I clicked this imprint—the smells, the touch— and blazed the moment onto the fabric of my soul, my psyche, for good. It is alive and there, in my being, and I can call it up as I like. I knew that I had to capture and hold the moment permanently. It was that “knowing” that I truly cherish. I have convinced myself that I have it “forever”— at least as long as I live. That bit of Ezra that I caught and held and still have is like a firefly in a half closed hand with the light shining out between my fingers.

Ezra intensified every pleasure in his own life and in mine. It was all the sweeter to laugh and to live fully because Ezra was there. It was all the sweeter to have three other children who were busy growing and squabbling and struggling to find themselves, because Ezra was there. He made everything vital and important. Everything that happened, good and bad. He was the anchor and the weight that held everything else.

I am sitting in my car on a summer day, parked at the track, getting ready for a run. This very spot is where Pancho and I hoisted the stroller up over the mesh fence—countless times, then we hoisted Ezra up and over the mesh fence—armful to armful—and plopped him down in the stroller on the track. We all ran around the track, Pancho doing his laps, Ezra and I and the stroller going as fast as we could manage so that Ezra would experience the speed that his legs would never provide. Rushing through space and time. And then, there was the wind. The wind. Then it began. The stiff ecstatic kicking, one leg then the other, out stretched and stiff with extreme joy, accompanied by his coos and yelps of glee. That Stevie Wonder grin, head stiffly moving from side to side, arms outstretched downward with frantic delight. Yes. It was well worth my out-of-breath heaves of recovery after each lap. Pancho was steadily doing his laps while Ezra and I raced along, rested then raced again. Our dogs barked on either side of us, adding to the excitement. I wonder if I realized in those moments that seeing Ezra kicking with joy on the track would be a time of such deep happiness that would be hard to equal anywhere else in life?

Seventeen years he lived. I have begun to write these words. Thank you to the wind that nudged me. I will run now, on this summer day, by myself and probably cry as I do, maybe see the stroller in my mind’s eye or maybe I will just feel the wind and smile.

His imprint is everywhere. For someone who could not talk or see or walk, he made a big splash.