Naturally, I'm up to my ears in books and articles about Down syndrome, and I've also discovered a delightful cornucopia of resources and blogs online. The way the information is presented is all across the board, and since Mirabel was born I just haven't been able to be terribly traumatized by the diagnosis, so I'm tending toward the more positive vibes out there. One of the first books we bought at the bookstore is called Babies With Down Syndrome. I tried to wrap my brain around the science of the first chapter, which was full of explanations and the words chromosomes, cells, genes, and the like. Um, yeah, I tried to understand that part. But as we all know my brain tends to start fluffing when it tries to comprehend anything on the math or science side of the spectrum. (I saw this great tee shirt on Mental Floss recently: "I'm an English major (You do the math).")
The second chapter of that book was full of words like anger, regret, denial, and rejection. I put the book down mid-chapter and haven't picked it up since. I know there is some good stuff in later pages, but for now I'm reading one called Gifts, which is a beautiful montage of stories written by parents about how children with Down syndrome enhance their lives. Then Libby, the woman behind Blessings and Glory, sent me - for free - another wonderful tome called Roadmap to Holland, which is a mother's first-hand account of raising her son. Both of these books are touching in their simple truth: having a child with Down syndrome can actually be a pretty amazing thing.
I thought this article on Baby Center was a wonderful overall description of DS, and I particularly liked the positive vibe and descriptions throughout: "beautiful almond shaped eyes," and "exceptional social intelligence."
And then, there's this. Yesssss. There's this.
Happy 8-week birthday, Mirabel! I am so excited for our journey together.
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I liked the Gifts book, too. And Martha Beck's book Expecting Adam is excellent. Your daughters are beautiful.
ReplyDeleteI think Babies With Down Syndrome is one of the worst books for new parents. It was the first book I picked up and started reading after we got Finn's diagnosis, and it just left me feeling so raw and sad. I don't recommend it at all - and I know a lot of other parents of children with Ds share similar feelings. Gifts is great. Road Map to Holland was my life line while Finn was in the NICU. I even made everyone in my book club read it and I hosted the discussion! Anyway, seems like you're doing beautifully. Congratulations on your beautiful little girl. I look forward to following your journey.
ReplyDeleteAnd thank you for the comment on my blog :) You are welcome to link to that post!
great video! the sky is the limit for both of your sweet beautiful girls. . . we can't wait to grow up together. . but not tooo fast. xoxo
ReplyDeleteYou are doing such a terrific job! Unfortunately, I read Babies with Down Syndrome front to back the first night I was in the hospital with Lillian. Needless to say, I didn't get ANY sleep and my eyes were puffy from tears! In fact, it was the Genetic Counselor who gave it to me, but did warn me not to read it right away and take my time with it. The book is very "as is". What I did like were the stories from parents in them...they helped. Gifts, also made me cry with every story and Road Map to Holland was just wonderful.
ReplyDeleteBut my greatest resource was finding my group at babycenter and the blogging world!