You might think that a book about raising a child with Down Syndrome is not really relevant to your life. You would be wrong. This book is about that, and much, much more.
Amy Julia Becker is a blogger and writer (and former seminary classmate of mine) who has written a number of thoughtful reflections on disability, faith, and parenting. A Good and Perfect Gift is her admirably honest memoir about the surprise and challenge of discovering that her first child, Penny, had Down Syndrome. Becker does not pull punches about her initial disappointment that her hopes and dreams for her child (and herself) needed to be adjusted, perhaps dramatically.
Educated at an elite boarding school and then in the Ivy League, Amy Julia brought Penny into the unusual world of the Lawrenceville School, another elite institution just south of Princeton, where her husband was a teacher. Not everyone will relate with this pedigree and upbringing, but this “perfection” is precisely the backdrop that makes her reflections all the more poignant, throwing into high relief the issues, obsessions, and idols that are ubiquitous in our culture of raising perfect children.
After all, in a world where intellectual ability is all-important, where do the intellectually disabled fit in? At first, Amy Julia is not so sure: “Will I be able to be proud of her? Will I be able to love her?” (pg. 25) As uncomfortable as these questions are, Becker gently leads the reader to the awareness that these are not questions unique to intellectuals who have disabled children. Rather, the challenges present when a Princetonian gives birth to a girl like Penny may be nothing more than magnifications of the dynamics that are present to all parents: will we love our children for who they are, will we receive them as the gifts they are, or will we only be able to feel love and pride for them if they fulfill our expectations and criteria for a “meaningful life”? By examining her assumptions about “perfection,” Becker invites us to think of our own.
This book has some incredibly profound theological reflections on disability, which I found myself reading out loud to my wife: how does Down Syndrome reflect the brokenness of a fallen world, if it does at all? Will Penny have Down Syndrome in heaven? And the question that permeates and develops through the book: Is there anything “wrong” with a person with Down Syndrome, or is the problem really with “the rest of us” who struggle to welcome them? It is in wrestling with this question herself that Becker shines:
“After weeks of thinking about Penny and about what was not good in her, I finally realized that there was just as much--no, there was more--that was not good in me. All the pettiness, all the judgment, all the bias. Over and over again, I had thought about who she might have been if that extra chromosome hadn’t gotten stuck in that first moment of conception. I couldn’t escape wondering about the “real” Penny, my daughter who seemed hidden behind her diagnosis. I had wanted to be able to change her instead of receiving change myself.” (pg. 99)
Surely this is not just instructive for parents of children with special needs, but a word of challenge and truth to every parent who brings home from the hospital a little person with unique strengths and weaknesses, and an amazing ability to expose these parental attitudes of pettiness, judgment, and bias.
It is no spoiler to say that Becker comes to see and appreciate her daughter in a new way. Her fear and grief give way to joy and gratitude. However, there is nothing trite about the way this is described: the complexities and emotional ambiguities are on display and considered throughout. This book helped me toward better ways to think and speak about “Down Syndrome people,” that particular phrase being an example of the way we condescendingly stigmatize. (I bet I’ve even used that phrase, and its attending attitude, on this blog.) But along with that, she helps us think not just about children with special needs, or their parents, but about all children, all parents, and the warped culture we all inhabit, with its arbitrary and destructive markers of value and worth. Who loses out when gifts like Penny are refused? Becker nails the answer and summarizes the theme unpacked in the book with this journal excerpt:
“Can she live a full life without ever solving a quadratic equation? Without reading Dostoevsky? I’m pretty sure she can. Can I live a full life without learning to cherish and welcome those in this world who are different from me? I’m pretty sure I can’t.” (pg 123)
All of these questions are pursued in a very readable way as we follow the Beckers through their first years as parents. This book would be a “good and perfect gift” for Christmas, when we have the chance to prepare our hearts to welcome another surprising child--the Good and Perfect Gift of Bethlehem.
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