Special Needs Mom: Why I let my daughter splash in the rain

By Suzanne Perryman

For Special Needs Mom

Published: Monday, Oct. 7 2013 8:50 p.m. MDT

Editor's note: This post by Suzanne Perryman originally appeared on her blog, Special Needs Mom. It has been shared here with permission. Follow her on Facebook and Twitter.

It is bedtime, and my daughter Zoe, fresh from her bath, is heading to the kitchen table for her nightly medicine and dessert. She is tired, I can tell, by the slow way her legs come together, causing a clumsy and uneven gait. Step by step, she makes her way pulling her walker behind her. She moves forward to the promise of cookies and milk, humming her way down the hall.

Maybe it is the break in the hot Arizona weather, the cool breeze or the beauty of our backyard desert sky, but something is calling to me. So I go to Zoe and take her by the hand, carefully leaning into her, as my body adds balance and prevents her from falling. She is shaky and tired, and she takes tiny steps now, in tandem with mine as I lead her. “Uhh, Mom?“ she says, questioning the departure from our reliable nightly routine. “Dessert on the patio tonight,” I answer.

I grab her covered cup of milk and small bowl of cookies with my other hand, and we make our way out the back door and to our bench on the patio. We sit facing the natural desert and just watch ... above the shrubs the quail visit, the baby birds circling and tiptoeing down the line of a nearby fence. The sky is a darkened, shadowed canvas with fading streaks of color left behind from the setting sun. I look up at my tiny twinkling white lights hanging above us. I strung them here recently, determined to take a moment in simple celebration each night, a reminder, to sit and breathe deeply, to just be.

Zoe’s bowl of cookies rest in my lap while she drinks her milk and she leans against me. I am thankful that I remembered to steal this moment that is not so ordinary — with the breeze, the beauty of the night sky, and the unexpected relief from the recent hundred-degree heat. Zoe is chattering contentedly, as she talks of school, her classmates, her big sister ... but I have lost my place in the steady stream of her words. I am thinking again about the beauty of this moment and how lucky we are that Zoe can see this fading painted sky, even the small birds that slow their flight near the edge of our yard. Zoe has not lost her ability to see these things as the doctors once predicted she would.

Six years have passed since that diagnosis. Six years of Zoe learning and reading braille and six years of functional vision. Her retina diagnosis still present, yet hasn’t worsened, and, instead, her vision has stabilized. In agreement, my own view has stayed constant and committed; see and celebrate the simple things each day.

The other day, I found myself within earshot of a mom with a young child. Near a field of grass, the child took off running. The mom tagged behind on the sidewalk along the field and after a moment yelled to the child, “ Stop running. Stop. Running,” she yelled again, and then, I wanted to yell, too. To this mom ... I wanted to yell ... let him run.

Let him run for my little girl, who never has. Let him run, and smile, and run faster and then fall and roll in the soft green mounds, until he is covered with grass, and sweat and laughter, because there are little girls like mine who will never run, who will never know what that feels like.

This perspective, this point of view, is a gift that mothers like me live with. We mother each day with our eyes wide open, not just marking the fatigue and the fevers and the falls that happen without warning, not just for these things, no. Our wide, open eyes also savor the sweetness in a smile and the simple joy that comes with laughter, that simple actions and movement can take great effort, and, therefore, are a gift.

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