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!
What a great post Jen. You've made me want to get on Amazon and order that book too!
ReplyDeleteI agree with Leah ... I'm off to find the book too. :)
ReplyDelete