Today kicks off National Down Syndrome Awareness Month—a topic that is incredibly close to my heart and a topic that was the impetus behind starting “Cowgirl Up”.
To try and spread awareness, discuss resources and highlight inspirational stories I have committed to blogging every single day during the month of October on some topic related to Down syndrome. When we first learned about Joey’s diagnosis it was something I mourned on a daily basis. It is amazing how quickly that changes. I would not change a single thing about Joey. His life and his diagnosis have made our lives so much richer on a daily basis. We don’t take good health for granted. We don’t take being able to eat or breathe for granted. We now know that there are no guarantees with any child. Any person. We know that we’ve got this one shot to enjoy every day of life as much as possible.
To start the month, today I am highlighting a book called The Shape of the Eye: Down Syndrome, Family, and the Stories We Inherit,by George Estreich. It is a new book that just came out and that I have not been able to put down since it arrived from amazon.com last week.
The inside cover summary reads:
When Laura Estreich is born, her appearance presents a puzzle: does the shape of her eyes indicate Down syndrome, or the fact that she has a Japanese grandmother? In this powerful memoir, George Estreich, a poet and stay-at-home dad, tells his daughter's story, reflecting on her inheritance—from the literal legacy of her genes, to the family history that precedes her, to the Victorian physician John Langdon Down’s diagnostic error of “Mongolian idiocy.” Against this backdrop, Laura takes her place in the Estreich family as a unique child, quirky and real, loved for everything ordinary and extraordinary about her.
What is so unique about The Shape of the Eye is that it is told from the point of view of a father who stays at home and takes care of his children while also trying to work on his writing. Any parent who has ever stayed at home to raise children will greatly appreciate his accounts of day to day life. Mr. Estreich also provides a very realistic, yet uplifting account of some of the struggles families who have a child with Down syndrome face. To read about his daughter, Laura’s open heart surgery and hospital stays tugs at your heart as well as the challenges they face in trying to re-teach her to eat. He examines the paradox of separating the unique individual from the diagnosis.
As I have been reading this book (I’m now much too close to the end so I have purposefully slowed down because I don’t want it to end) I feel like I am reading what is partly Joey’s story. What is partially my own story on a daily basis. The low lows and the exhilarating highs of milestones and accomplishments that you may think your child will never reach. Like Mr. Estreich, I too wanted to know what exactly Down syndrome is. I thought that somehow by reading everything I could get my hands on I would be able to understand what Joey’s life would be like. Instead, the more I read, the less I know. What I really need to know, Joey teaches me every day. Mr. Estreich delves into the depths of John Langdon Down’s research and process by which he classified persons who have Down syndrome and it is incredibly interesting to learn the historical shaping of the term that “defines” our children. He delves into the prejudices, half-truths, and mis-characterizations the diagnosis of Down syndrome has historically become. He helps explain what it is like to have a child who much of society deems as “defective” all because of an extra chromosome.
We sometimes hear people say that our child “suffers” from Down syndrome. As Mr. Estreich covers in his book and as I can assure you is that none of our children “suffer” from having Down syndrome. They just have it. His text is witty, engaging and humorous. He puts into words what so many parents who have a child with Down syndrome go through and what they feel in the face of a society that puts a great amount of value on perfection.
If you ever feel the desire to understand more about what a parent of a child who has some differences and special needs feels like and goes through, The Shape of the Eye: Down Syndrome,Family, and the Stories We Inherit is the book to read. It is insightful, but unsentimental. You never feel sorry for him, his daughter or his family, you just walk away feeling a bit more empathy for what life is like for a family who has a child with Down syndrome.
Happy October and happy reading!