Over the course of the last several months, several friends from various church groups have suggested I order Good and Perfect Gift, by Amy Julia Becker. "Okay," I thought, "I will eventually." I noticed that the Down syndrome community was falling in love with the book, too. When my bloggy friend Meriah hosted a giveaway, offering one lucky reader her own copy of the book (which she was replacing with an electronic version) I decided that if I didn't win, I'd go buy my own.
I won, and a week or so later, my book arrived, as Meriah had promised, tear-stained and well-loved, the way I like my books. Once I picked it up, I couldn't set it back down.
If you have a child with Down syndrome, you'll probably recognize the story. You know how it goes: You get a diagnosis, you cry, you fight through pain, you watch your child develop a personality, and sometimes Down syndrome makes you sad, and mostly, you are okay, your family is okay. If you have a child with Down syndrome, you want to read this book for the articulation of the questions of value, intelligence, and the role of God. Even if you don't share Becker's faith, trust me, the questions she asks are familiar. (Yes, I know I do share Becker's faith. But I've heard that the book is great from women who are not part of the Christian church, and I think you will agree.)
If you don't have a child with Down syndrome, please read this book. Amy Julia Becker pulls from her journal at the time of her daughter Penny's birth. The outward story isn't surprising if you read this blog, or if you know us. Penny's diagnosis was a surprise, and Becker writes about the feelings I experienced with Ellie's prenatal diagnosis more eloquently than I ever will. I want to go back and edit my "Faith and Down Syndrome" post, and simply leave a link to this book. You will understand more of our family, more of the hope, more of the pain, more of the love. But that's not why you should read this book. You should read it because Becker addresses pain, surprise, love, redemption, and the general hurts and victories of our shared human condition. You should read it because "this could never happen to me" happens, whatever "this" may be.
Becker explores her own theology and determines that Penny has value, regardless of her IQ or the age at which she meets milestones. Becker also questions her own values, admitting with raw honesty her faith in academics, athletics, and hard work. She articulates her changing perceptions and arrives at a beautiful place of hope, high expectations, love, and acceptance.
When I was pregnant with Ellie, one of our pastors preached on the story from the bible of a man born blind. The disciples ask Jesus, "Who sinned, this man or his parents, that this man was born blind?" Jesus responds, "Neither, this man was born blind that the glory of God might be revealed." I remember tearing up in church that day, praying that this would be the case with our little girl with an extra chromosome and a heart defect. Becker relates the same story from Scripture in her book, and I was again moved to tears. As I read, Ellie napped beside me and I reached over to hold her tight.
Becker goes beyond the platitudes of "special kids for special parents" and discusses Penny's diagnosis with a rawness and a depth that speaks to any shocking situation, not just having a child with special needs.
Go read it. And check out Amy Julia Becker's blog, too.
And now, we all know a post wouldn't be complete without some Ellie photo love.
|(After a long day of shopping, the pigtails came out and looked... like this.)|
|(Love my car. Love it.)|
Today we are also sharing some new friend love. The other day, Ellie got to meet a new friend who also has Down syndrome, along with her big brother. Thanks to Baby D and her mom and brother for letting us hang out, and for letting me use the photos!
|(Try to resist pinching those cheeks. Just try.)|
|(Playing at the park.)|
PS. This week is Down Syndrome Awareness Week in Canada. We love you, Canadians! Here's an article from Canada this week.
PS#2. Check out I Heart Faces photo inspiration for Halloween. You might recognize some pudgy little hands.