Missing Out on Beautiful: Growing Up With a Child With Down Syndrome

by Amy Julia Becker

Our daughter Penny was born on December 30, 2005. She was diagnosed with Down syndrome a few hours later. It’s almost hard to remember what it felt like to hold her as a new baby—in all her beauty and vulnerability—and to hold the grief and fear that came alongside the love. As I write in one of the essays compiled in this book, one of the great gifts Penny has offered me is the gift of trusting that love is stronger than fear.

Penny has helped me believe that when we surrender to love and give love space to grow, it will overpower and overturn fear. Fear shrivels us up into ourselves. Love expands us.

I’ve written tens of thousands of words about our experience as parents of a child with Down syndrome over the years. The first, and longest, came in A Good and Perfect Gift, my memoir which describes the first few years of Penny’s life and how we came to receive her as a gift. A Good and Perfect Gift was published in 2011, but Penny continued to grow up, and I continued to write. So in 2017, I compiled six essays I had written—as well as an interview with 11-year old Penny—in an e-book called Missing Out on Beautiful.

Then, in the fall of 2020, as we celebrated Down Syndrome Awareness Month, I put together another e-book that offers what I consider the “best” of the dozens of essays, blog posts, and reflections I’ve written in recent years. These essays reflect our family’s experiences while Penny was in middle school, and you’ll hear from me but also from Penny and from her siblings about the challenges and gifts of our life together.

Those two e-books are now compiled into this book of essays. What strikes me as I look at these essays and reflections side by side is how much we’ve moved from the realm of our personal space and into the public space. This collection of thoughts speaks to the significance of community—dance teachers, schoolteachers, churches, friends, and even acquaintances—who help to create a space not just of inclusion but of belonging for Penny and for our family. That’s my hope, for Penny and for all the kids and adults who have been pushed to the margins of our society—that we would learn to become interdependent communities that welcome the beauty and gifts we have to offer one another, communities where everyone belongs.

78 pages, Paperback

Published November 9, 2021

About the author

Amy Julia Becker is the author of To Be Made Well: An Invitation to Wholeness, Healing, and Hope, which releases in March 2022. She is also the author of White Picket Fences: Turning toward Love in a World Divided by Privilege (2018), Small Talk: Learning From My Children About What Matters Most (2014), and A Good and Perfect Gift: Faith, Expectations and a Little Girl Named Penny (2011). A graduate of Princeton University and Princeton Theological Seminary, her essays about personal, social, and spiritual healing have appeared in the New York Times, the Washington Post, Christianity Today, and more. She is a big fan of frozen yogurt, her Ember mug, and hiking in the nearby woods with her family. Amy Julia lives with her husband and three children in western Connecticut.