Ezra: A Mother's Portrait

By Stella Elliston

Penned by his courageous mother, this is the portrait of a boy as gifted as he was challenged, and of the family that loved him. Born two months premature, Ezra suffered permanent brain damage at six days old. His parents ignored the forewarnings of doctors and welcomed their son openheartedlv into their lives, undaunted by his ongoing health issues and prepared for the fight and persistence it would take to obtain the resources his special condition depended upon during his all-too-short life.
To his family and surrounding community, Ezra was an infinite treasure, a child full of wonder who demonstrated how to find joy in every moment—in Elliston's words. "For someone who could not talk or see or walk, he made a big splash."
In reading Ezra's story comes the discovery of a parallel portrait, one of incredible hope and sadness, one of fierce endurance and the struggle to heal, one of beautiful motherly love. Ezra is just as much about its narrator as it is about its subject—their stories inextricably dependent upon each other. As Elliston explains, "Ezra and I are inevitably intermingled. Our boundaries blur."
Lyrical prose and an ability to communicate profound emotion with vivid clarity allow this book to captivate any reader. Beyond ensuring that the memory of her beautiful son will continue to glow, Elliston's book is ultimately a reminder of the unparalleled love that exists between a parent and her child.

• Language: English
• Publisher: BookBaby
• Release date: Dec 3, 2013
• ISBN: 9780989493888

Book preview

2003

author’s introduction

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.

That’s all. Just that.

we will all go to the river

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.

waiting for the news

Iam 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