homeI was asked if I wanted to review the book The Shape of the Eye by George Estreich. It is a memoir on "Down Syndrome, Family, and the Stories We Inherit." I had seen this mentioned on FB and a few blogs and put it on my "to-one-day-read" list. The review came at a great time - just in time for National Down Syndrome Awareness Month.
I enjoy reading other books of other parents' experience with raising a child with Down syndrome (and obviously one reason why I follow so many blogs!) It's nice to find out that you're not 'the only one' who felt a certain way, or dealt with things a certain way. Sometimes you feel like it's just you until you read someone else's story and it helps to validate your own feelings.
Sometimes other people can sum up your own complicated thoughts in a couple of sentences. When I read this in his book, "If Down syndrome were ordinary in the world, if a commonsense view of dignity and personhood and capability prevailed, then perhaps our early days would have been easier. But Down syndrome is not ordinary in the world." it reminded me of my post on Hope and Normalcy and in the end saying that maybe if Down syndrome happens so often, it must be a 'normal' part of the genetic make-up, and how different the delivery of the diagnosis would be if the world looked at it this way. "If Down syndrome was ordinary in the world." Yes, indeed. If only the world did look at it that way.
As in every personal story there are differences too; George's story of raising his daughter differs from mine in that his mother is Japanese. When Laura was born and the doctor mention Down syndrome and a few of the characteristics she had - such as the upward, almond-shaped eyes - George was able to explain that away as inheritance since his mother is Japanese. For me, the first time I looked at Kayla's eyes I knew she had Down syndrome because of those almond-shaped eyes.
I like his take on 2 of the most common stereotypes: that children with Ds are sweet, and that they are stubborn. He asks, "How can both be possible? If they are stubborn most of the time, or half the time, can they still be counted as sweet?"
While this memoir does describe Laura's birth, diagnosis, the aftermath, how they felt, how they came to accept it, how it became part of their lives ... it also goes deeper and beyond their own story of raising Laura. He explores how our attitudes about Down syndrome have come to be shaped by the descriptions and writings of John Langdon Down.
I enjoyed the personal family aspects of the memoir, but for me the most interesting chapter was the one on John Langdon Down. Mr. Estreich did a lot of research for his own knowledge after Laura was diagnosed, and for his book. I admit to not having done much research on the man. The only thing I really knew about him was he was the first person to describe individuals with Down syndrome and their characteristics ... and that is how it came to be named after him.
I knew that Dr Down described these individuals as "Mongolian" because the upward slant of the eye, but I didn't realize the history behind that. The whole chapter is very fascinating ... how Down tried to classify the people with Ds into a race category; that he couldn't comprehend how they were born to Caucasian families yet had "Mongolian" features - so he thought it had to be a degeneration in the womb. Initially he speculated it to be the cause of tuberculosis.
I know that people with Down syndrome existed long before it was described; and this fact is written so eloquently in the book, "...the children existed before they were discovered; what changed, after Down, was the way they were known....even though we have rejected the name he chose, the terms of his description are still with us."
One of the biggest revelations in this chapter, for me, was the fact that John Langdon Down had a grandson, also named John Langdon Down. This grandson was born after the elder John Down had passed away. This grandson was born with ... Down syndrome. I find that so ironic and fascinating. I keep thinking about that fact and wondering if anything would've changed with his view and descriptions of Ds if he had been alive to know his grandson. (Also, how have I been in the Ds 'world' for 8 years and never heard this tidbit before? I can't believe I haven't come across that until now!)
The Shape of the Eye is a poignant and wonderfully-written story. It is a book that I think should be included on the list of books for new parents to read. I'd like to give my copy away to a reader ... just leave a comment on this post and mak sure I have a way to contact you if you're a winner.
*This isn't a requirement to enter ... but since it is DS Awareness Month and I've been blogging for 5 years now... I'd love it if you left a comment letting me know something you've learned about Down syndrome just from me sharing about my life with Kayla.
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