COMING SOON! Every Least Sparrow by Carolyn Walker – Available January, 2017
[UPDATED: Early release paperback available for purchase on Amazon]
Every Least Sparrow is simultaneously heartbreaking and delightful in revealing the story of Jennifer Walker, a girl born with Rubinstein-Taybi syndrome, a rare and confounding condition that affects mental and physical development. Nearly every one of Jennifer’s body functions is adversely affected by this disorder, creating enormous challenges. Rubinstein-Taybi, however, cannot lay claim to Jennifer’s spirit, or her mother’s determination that her daughter live a full and happy life.
With the support of Jennifer’s father and siblings, and devoted pediatrician, they set forth on a quest to find the “normal” that every child deserves, and every parent hopes for. Their quest takes them from fear through desperation, to true enlightenment — a profound understanding of what it means to be human. Ultimately, all involved, and especially the mother, realize the gifts of Rubinstein-Taybi: enduring love, and even envy for the accepting and joyous life that is Jennifer’s. Learn more about Every Least Sparrow.
Author: Carolyn Walker
Available: January, 2017
Ebook: $9.99 and $2.99 US for the Kindle Matchbook Program
Preface by Raoul Hennekam, Professor of Pediatrics and Translational Genetics
There you are. A doctor has just told you your child has a syndrome. A syndrome: even just that word, it sounds already ominous. In fact you know only of Down syndrome. But Rubinstein-Taybi syndrome? Never heard of it. You have all kinds of questions, but then it becomes clear your GP and your pediatrician have never seen a child with this syndrome either, so they can hardly help.
What to expect? Are there medical problems? Should a child with this syndrome be under control for these, and can you prevent anything? How about medications? Can your child go to school later on, or marry, or have children? How is it to have a child with this syndrome? Will you be able to cope with it? Can you go on having a job? Will it influence your relationship with your partner or your other children?
As always the best information can be obtained from those who are dealing with children with the syndrome most: the children themselves and their parents! The present book is written by such a parent, and offers a wealth of information. Surely about the syndrome itself. But, more importantly, how the life is of a family in which a child with Rubinstein-Taybi syndrome is born. The shock, the disbelief, the uncertainties, the anxieties. But also the unexpected joys, the warmth and care of people of whom you hadn’t expected it, the laughter, the love. The book is written in a marvelous style, and is open, in every sense of the word. The book teaches you also how to look into the world through the eyes of someone with the syndrome, and you will read it is usually a beautiful world.
The word syndrome? Please just forget it. Read this marvelous book, cry and laugh, and enjoy. – Raoul Hennekam MD PhD, Professor of Pediatrics and Translational Genetics, University of Amsterdam, Medical Advisor of Rubinstein-Taybi support groups (several countries), Amsterdam, June 2016
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, 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 is a lifelong Michigan resident and the married mother of three grown children.