Loving Andrew: A Fifty-Two-Year Story of Down Syndrome
“To know Andrew was to love him.” This is a poignant story of a family who chose to bring up their son with Down syndrome as a fully involved member. They overcame other tragedies to help Andrew be the best he could be, being what he was with the gifts that he was given.
In spite of being told that their firstborn son would have many limitations in life, his parents were amazed at what Andrew achieved. He learned to read and write, ride a bicycle – sometimes too far from home – play the piano, swim almost as well as his siblings, ride horseback and perform dressage, graduate in special education from high school, take classes at a community college, travel alone on Chicago’s public transportation system, hold a job in a regular supermarket for 25 years, win ribbons and medals in Special Olympics events, and serve as the lead acolyte in his church. Andrew’s ability to describe the demons of his paranoid schizophrenia that plagued his later years provides a picture of a little-known ailment among the Down syndrome population.
The book is aimed at a broad audience in order to help all people understand the humanity and value of a person with a disability. This is especially important as medical technology continues to improve prenatal testing for abnormalities, and parents are faced with the heart-wrenching decision to terminate a pregnancy or risk having a less-than-perfect baby. The number of children born with Down syndrome is being drastically reduced, just as opportunities for them to be accepted into the mainstream of life have never been better, and their development has improved exponentially. No embryo selection or prenatal test can guarantee a flawless product or rule out unexpected calamities such as the death from cancer of our second baby.
Excerpt from the Foreword by Brian Chicoine, MD:
“As the medical director of the Adult Down Syndrome Center… I always appreciate any occasion to get a more in-depth look into the lives of those individuals and their families. This book is one such opportunity… It is about the hope of that journey, and is told through the life of an amazing, delightful, loving, fun, and caring man. Each person has a story. Andrew certainly had his. In this book, you will get to know Andrew, learn his story, appreciate him, and love him. Perhaps you, too, will experience the journey, the hope, and the casting aside of preconceived notions.”
When the hospital staff delayed bringing Wyllie her firstborn child after his birth in 1959, she was immediately uneasy, and rightfully so: Andrew was diagnosed as a mongoloid, or what is now known as having Down syndrome. Troubled by the doctor’s explanation that “sometimes the best policy is to inform the mother, before she even sees her baby, that the child has died and then place him immediately in an institution,” she and her husband decide to keep their son at home and raise him as normally as possible. Wyllie details the early struggles with Andrew, from difficulties nursing to apprehension over what their family, friends and neighbors might think. She recounts their lengthy search for a school program to fit Andrew’s capabilities and their great fortune in finding Lambs Farm, a still-operating facility where Andrew lived happily for most of his adult life. Wyllie’s writing is lucid and remarkably forthright. She doesn’t shy away from the negatives, such as her frustrations and mistakes as the parent of a special needs child, or her concerns that her other, “normal” children were somehow being slighted. She also conveys the grief she faced in the tragic cancer death of her 14-month-old second child. The book features Andrew’s writing and drawings, letters from his teachers and co-workers, and interviews with many of the people in his life, which provide an intimate look at his intellectual, emotional and physical development. As a comparison, Wyllie also chronicles the experiences of two younger children, one born in 1980 and one in 1994, who also suffer from Down syndrome. Her account of the history and science behind the disorder is thoroughly researched yet highly readable, and she evenhandedly discusses the possible impacts of modern prenatal genetic testing. Of her ongoing struggle for better resources, Wyllie remembers that “the most difficult task was to capture the interest of the average person who does not have a special needs child.” Transcending this aim, her book is as richly absorbing for casual readers as for caregivers and loved ones of Down syndrome children and adults.
This clear-eyed, intelligent memoir is an invaluable resource for anyone whose life is affected by a developmental disability.
Once you start Loving Andrew by Romy Wyllie, you'll have a hard time putting it down. Wyllie deftly combines her inspiring personal story of the challenges and joys of raising Andrew, her first-born son who has Down syndrome, with fascinating information about how society has progressed in the treatment and acceptance of handicapped people. This is a book for everyone.
–Fran Yariv, author of seven novels, including Last Exit and Safe Haven
This book is truly satisfying, on both emotional and informational levels. Your decision to keep Andrew set the standard in your family of love and commitment and courage. As you said at the conclusion, “Caring for him as a child taught me patience and understanding and appreciation for simple things. I learned humility and a different outlook on the measure of success.” The way you swept him into school, into travel, into tennis, riding, swimming. His letters, his jobs, his girlfriend Lael, his honesty, his humor, his caring show him to be an extraordinary and resourceful person, but how sad and bewildered he must have felt when he heard voices and became a victim of delusions, then forgetfulness.
–Jenny Lawrence, Writer
In Loving Andrew, Romy Wyllie has written a moving, unflinching disability memoir that tells a story most disability memoirs don't or can't touch. This is not a book about a cute, charming kid with Down syndrome; it's about a cute, charming kid with Down syndrome who grows up to become an independent adult with multiple challenges. It's also about what "family," "love," and "independence" can mean—for all of us. Loving Andrew tells a story that needs to be told, a story that needs to be heard.
–Michael Bérubé. Director, Institute for the Arts and Humanities, The Pennsylvania State University.