Choosing Ourselves

“This intimate account of a mother, a son, and the birth defect that defined their lives is about guilt, fear, bravery, and love; about questions asked and questions unanswerable. It is about wounds and healing—not so much of the palate or the lip, but of the heart.”

—Lauren Kessler, award-winning author of Free: Two Years, Six Lives, and the Long Journey Home

“Choosing Ourselves is a must-read true story of the challenges, commitments, and unwavering love of parenthood. A compelling story of a parent and adult child exploring their past together—each person speaking their truth to better understand the other’s experience—led to deeper understanding and love.”

— Nancy Golden, Ph.D., MS, Special Education, Ph.D, Curriculum and Instruction, Leader of the Oregon Schools Research Network, former chief education officer for the State of Oregon

“An extremely rare and valuable contribution to the literature on the experience of disability and family life. The dialogue is deeply humanizing and will be a source of encouragement and also serve as a mirror for many parents and adults with disabilities.”

— George H.S. Singer, Professor Emeritus, Ph.D, Department of Education, Gevirtz School, UC/Santa Barbara

"Choosing Ourselves is the saga of navigating a health system often lacking in compassion, understanding, and psychosocial skills and the wounds that an insensitive approach to medical care inflicts on the family. Through its stark and moving recitation of the facts, this book serves as a vivid example of how patients and their families may encounter a lifetime of frustration and dashed expectations despite their efforts to achieve some kind of normalcy amidst the challenges of a life-changing condition."

—Catherine Musemeche, M.D., board-certified pediatric surgeon; Fellow, American College of Surgeons; and author of Small: Life and Death on the Front Lines of Pediatric Surgery

“Dr. Walker’s wish that doctors were interested in knowing her son as a person rather than a ‘case,’ points to a more truly holistic and inclusive approach to caring for children. Choosing Ourselves is an important contribution to the literature of helping families find their own unique voices as they advocate for their children.”

— Norman Scott, M.D., retired pediatrician affiliated with Kaiser Permanente, Denver, CO, and with Operation Smile

“This story of a mother’s and son’s angst around whether she had done something to cause her son’s cleft palate condition reveals an issue that has never come to the attention of society or to the field of Special Education—the impact on families of a bilateral cleft palate. I am mesmerized by Barbara and Jim’s depth of honesty and emotion, as well as their ultimate resilience to not just survive but prevail.”

—Ann Turnbull, Ed.D., Distinguished Professor Emerita, University of Kansas

“Choosing Ourselves uncovers cracks in the healthcare system when serving a child or person with a disability. Yet, it also credits the caregivers who know their limits and, nevertheless pursue the best care they can honestly and openly. This courageous book is a wakeup call for professionals. It will hit you right between your eyes, and you will be better for it!”

— Jane Eyre McDonald, CCC-(Certified of Clinical Competence) speech-language pathologist; former executive director of Eugene Hearing and Speech Center; University of Oregon Communication Disorders and Sciences Program faculty member.

“Barbara and her son build a tapestry of inspiration, will, defiance, and tenacity that will inspire generations of families who are faced with the challenges of dealing with birth anomalies.”

—William Sarnoff, teacher, chronicler, and author of Around the Samovar and This is What I Remember

“Choosing Ourselves is a compelling account of a determined mother’s fight not only to guide her son through the multi-tiered trials and traumas of the care required to address repair of his cleft palate but to educate medical professionals about the healing properties of holistic care and patient compassion. Barbara’s beautiful, honest prose and Jim’s poetic accounts of his own memories of the same time, as well as his changing feelings over time, dovetail perfectly. This is a book for all combinations of parents and children.”

— Spike Gillespie, journalist and award-winning writer of books, magazine articles, blog posts, and poetry

“When a mother learns she can’t breastfeed her newborn because her baby has a severe cleft lip and palate, her idea of motherhood is abruptly rerouted as she navigates her son’s surgeries and the psychological and social challenges stemming from his disability. But everything changes when her son asks her—for the first time at age 44—how it felt to be his mother. The result is a stunning co-authored memoir written by mother and son—a unique telling of one disability from two perspectives and ultimately a universal story punctuated with eyes-wide-open memories and a self-help feel for all parents who have ever experienced raising a child with a difference.”

—Sarah Barnes, award-winning author of Meredith & Me: a mother and daughter on a profoundly different journey