Linda K Sienkiewicz

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Every Least Sparrow: Special Needs Parenting

March 20, 2017 By Linda K Sienkiewicz

Every Least Sparrow, memoir about parenting a special needs child, by Carolyn Walker

A Parent’s Expectations:

Looking back, Carolyn Walker writes that it was good that she and her husband didn’t know what to expect when their daughter Jennifer was diagnosed with Rubinstein-Taybi syndrome shortly after her first birthday. They believed she would be “delayed,” and they nurtured her as such. Soon, it became apparent that she would be far from “normal.”

In Every Least Sparrow, Walker ushers us into the baffling, confusing, and yet rewarding world of parenting such a child. HowCarolyn Walker writes about parenting a special needs child
irresistible Jennifer’s laughter is, and how utterly remarkable when she first says “I love you” (more like I uv oo) at age four. How astonishing it is that, as a doctor savagely slices into her infected toe, she blots her mother’s eyes with a tissue and asks her “Why are you crying?” How she shops for eyeglasses, touching and sniffing and tasting them, “as if she were expecting a hint of peppermint or lemon.”

As she grows, Jennifer undergoes dehumanizing examinations and photographic sessions, countless surgeries, and falls head over heels in love with a disabled man-child she meets at camp. She attends public school until she’s 26, and works sorting silverware at a cafeteria. All the while, of course, her mother diligently “brushed two sets of teeth every day, managed two menstrual cycles each month, dressed two bodies, tied two sets of shoes, combed two heads of hair, ran two baths….”

Ladybug Mixed Media Art

In care-taking that would be a parenting burden to someone else, Walker finds moments that delight her while leading her to wonder about the inner workings of Jennifer’s mind. Most memorable is her astonishing discovery that, during a spring infestation of ladybugs, Jennifer Scotch-taped dozens of ladybugs in place where they landed on her bedroom window and wall, posed in all directions, their glossy, polka-dotted shells closed.

Walker’s response is what I love best about this memoir. Instead of being angry or frustrated, she is moved by the sight, as if she were “pondering a Van Gogh or a Rembrandt.” She wonders if Jennifer simply may have wanted to preserve their beauty. Walker imagines her as she must have looked creating her masterpiece:

I imagined her thus passing the time on a boring Sunday, her plump little hands with their square-tipped fingers and jointless thumbs grappling with the tape dispenser. I saw her working hard, concentrating, tugging off pieces suitable in size for ladybugs. She waddled the length of her bedroom wall, from left to right, lurching on one long leg, and one short one, happily engrossed in the task of sticking this bug first, and that bug next. I pictured the bugs too surprised to flee or fight, going calmly and with resignation to their deaths.

Jennifer has no explanation as to why she taped them, saying, simply, playfully, “I ‘unno,” when Walker casually asks.

The ladybugs remain in place until it’s time to repaint the room, as if Walker cannot bear to disturb her daughter’s mixed media art.

Measures of Joy

Most profound is the family’s realization that Jennifer’s life might be something to envy rather than pity as they witness the wholesomeness with which she sees the world around her, and how she unabashedly embraces it: “Another person’s color, nationality, religion, sexuality, age, gender or station in life, was of no consequence to her. There was no place on earth that didn’t have its merits, there was no task that wasn’t worth trying, there was no person who couldn’t be friended, and there was no fraction of time that didn’t contain some measure of joy.”

Every Least Sparrow has, among moments of trepidation and anguish, incredible moments of exuberance and brilliance. It’s an account of parenting with love and amazement. It reminds me that, as parents, we wish the best for our children, and hope they will grow to be wise and loving adults, but their existence and purpose in life is all their own, and the way they view the world is independent from us. The most we can do is nurture and love them with all our hearts, and then let them fly.

Every Least Sparrow is available in hardcover, paperback and Kindle from Amazon and Barnes and Noble. ISBN-13: 978-1942146506. Published by Garn Press.

About Carolyn Walker

Carolyn Walker is a memoirist, essayist, poet, and creative writing instructor. After working twenty-five years as a journalist, she returned to graduate school and earned her MFA in Writing degree from Vermont College of Fine Arts in 2004. Her work has appeared in The Southern Review, Crazyhorse, Hunger Mountain, The Writer’s Chronicle, the anthology, Gravity Pulls You In: Parenting Children on the Autism Spectrum, and many other publications. Her essay “Christian Become a Blur” was nominated for a Pushcart Prize and reprinted in the 50th anniversary edition of Crazyhorse. In 2013, she was made a Kresge Fellow in the Literary Arts by the Kresge Foundation. She teaches for Writer’s Digest, All Writers Workplace & Workshop, and Springfed Arts. You can connect with Carolyn on Facebook, Amazon and Instagram.



 

Linda K. Sienkiewicz is the author of the award-winning novel In the Context of Love, a story about one woman’s need to tell the truth without shame.

2016 Sarton Women’s Fiction Finalist
2016 Eric Hoffer Book Award Finalist
2016 Readers’ Favorite Finalist
2016 USA Book News Best Book Finalist
2015 Great Midwest Book Fest Honorable Mention.

“…at once a love story, a cautionary tale, and an inspirational journey.” ~ Bonnie Jo Campbell, author of National Book Award Finalist, American Salvage, and critically acclaimed Once Upon a River,and Mothers, Tell Your Daughters

“With tenderness, but without blinking, Linda K. Sienkiewicz turns her eye on the predator-prey savannah of the young and still somehow hopeful.” ~ Jacquelyn Mitchard, author of the #1 NY Times Bestseller, Deep End of the Ocean

Buy now: Amazon | Barnes & Noble | IndieBound

Filed Under: Books Tagged With: disability, family, memoir, parenting, Rubinstein-Taybi, special needs

About Linda

Award- winning writer, poet & artist. Cynical optimist. Super klutz. Corgi fan. Author of two novels, a picture book which she wrote and illustrated, and five poetry chapbooks. More here.

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