Monday, November 29, 2010

good read...

I am in the midst of a book title “For the Love” by Gina Favazza-Rowland (thank you Becca from the Bates Motel)…I am halfway through it and I am in a constant struggle of thought in my head…this book is the story of 2 sisters one that was born for the sole purpose of taking care of her older sister that was born with Down Syndrome…this is a very different book then I am accustom to reading about regaurding Down Syndrome…it is so NOT “Gifts”…which I am relieve because there is nothing I cannot stand more then the fairy tale ending that is not happening in my world…so far this book is not telling me how great life will be because I am that “special” parent…and how blessed I am to have Maddie in my life to show me how much I was lacking before I had her…with that said I LOVE THIS BOOK!! It is real and gritty and I have to stop myself from reading it to fast so I can internalize the message…to am trying to understand the in depth dynamic of these sisters…it has made me cry and has scared me to pieces…but it has also made me re-think and challenge myself and my views about Maddie…I am not scared of Down Syndrome…I am scared how society views Down Syndrome….how society treats my little girl…I am scared of the stares and the whispering comments…I know Maddie is cute now…but she will be 30 years old someday…and that is what scares me and keeps me up at night…I am rethinking how I use words idiot, spaz, etc…if I am not tolerant of the “r” word how are other groups of people tolerant of this language….disabilities is something she talks about in the book…she refers to her sister has having "different abilities"…I like that…I am also seeing something I have not noticed…in the book Gina the older sister does something anything…and Sarina the sister with Down Syndrome copies her…EVERYTHING she copies…and this is how she teaches her to be self reliant…the other day at he dinner table Max was drumming with his hands soon Maddie was…she was copying him…he was drawing on the dry erase board…soon she was…and today he was playing Wii and soon Maddie was…with the same exact motion and holding of the wand…it was amazing! Maddie is repeating words to us-- there, I do, bath, no….for sometime and consistency they are not complete words…but we understand them…when I think she is not doing something I want her to…she is simply observing and then she will do the task….this book is making me think and take notice….I cannot wait to finish it!

2 comments:

  1. I'm so glad you're reading this!! And yes, teaching self-reliance is sooo important. Samantha is a total mimic - she will do, or try to do, anything she observes (so we have to be uber-careful not to show her how to open the baby gate, etc., LOL). I catch myself so many times when I'm about to do something *for* her, and not only does she swat me away, telling me to "stop! I do it," but she teaches me to wait, and know that she will ask for help when she really needs it. Maddie will teach you *soooo* much, and in turn, will absorb everything you offer to her.

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  2. I want to read this book, sounds good! And you know I am not scared of Down syndrome either, its like you said, its societys views and perceptions of it I am most afraid of.

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