Our Good and Perfect Gift

When Penny was first born, when the doctors shocked us with the news that she appeared to have Down syndrome, the presence of a third copy of her 21st chromosome, I was hit hard with doubts. I doubted my abilities as a mother. I doubted my capacity to love a child who was different than I expected. And I doubted God’s intentions in creating her.

I thought there was a little girl hiding behind the extra chromosome, and I thought somehow we could peel back the genetic abnormality and discover my “real” daughter. Eventually I came to realize that there had never been any child other than the infant in my arms, other than the toddler learning sign language, other than the kindergartner giving me kisses and dancing with her father and asking to cuddle with her mom as she starts her school day.  With time I could see that the “real” Penny was right in front of me, filled with sweetness and joy and an ability to love without a filter, and I started to be grateful for the gift of her life.

But then I wondered whether that gift to us came at her expense. She was the one who had to wear braces on her ankles. She was the one with the risk of childhood leukemia. She was the one to endure a heart procedure and tubes in her ears and glasses. She was the one who couldn’t run as fast as the other kids, for whom learning took longer and required her to work harder. She was the one who struggled to make friends in school, who pulled hair or scribbled on a friend’s paper, who sat in the “thinking chair” at various points throughout the day.

I can’t say that I’ve received specific answers from God about why Penny has Down syndrome or why she struggles in her particular ways. But I’ve started to see that her life is much like mine, filled with contradictions, filled with brokenness and filled with beauty.

Penny is a gift to us, in all the ways her life brings us joy and slows us down and gives us eyes to see a richer experience of the world. She’s a gift to her community as she models love and compassion and perseverance. But her life is also a gift in and of itself, a gift that she too experiences in the giggles of snuggling under the covers with her little brother William, in the delight of walking home from school hand in hand with her friend Lily, in the wonder of receiving praise for good choices.

Countless other parents of children with Down syndrome tell a similar story. Ours is not a narrative of, “I once was really sad about it and now we’re okay.” It’s not, “I once experienced this as darkness and now my life is simply gray.” It’s not, “We’ve gone from negative to neutral.” But rather, from darkness to light, from sorrow to joy, from fear to wonder, from doubt to faith, from bitter to sweet.

I wrote this post for my friend Sara Hagerty, who blogs at Every Bitter Thing is Sweet. Those of you who’ve read this blog for a while will remember Sara and her family, as she and her husband Nate have adopted four children–two from Ethiopia and two from Uganda. Sara is running a series of posts right now in which she invites people to tell their stories of transformation, from bitter to sweet. I highly recommend taking a few minutes to visit Sara’s blog and to be challenged and encouraged by their story.

About Amy Julia Becker

Amy Julia Becker writes and speaks about family, faith, disability, and culture. A graduate of Princeton University and Princeton Theological Seminary, she is the author of Penelope Ayers: A Memoir, A Good and Perfect Gift (Bethany House), and Why I Am Both Spiritual and Religious (Patheos Press).

Comments

  1. Lisa says:

    Thank you for your life-giving posts.

  2. Tim says:

    With time I could see that the “real” Penny was right in front of me … That happens in so many relationships, doesn’t it Amy Julia? It can take me a long time to get past my preconceived notions of who someone is and get to know the real person. Thanks for giving us this glimpse into your family.

    I also loved this conclusion: Ours is not a narrative of, “I once was really sad about it and now we’re okay.” It’s not, “I once experienced this as darkness and now my life is simply gray.” It’s not, “We’ve gone from negative to neutral.” But rather, from darkness to light, from sorrow to joy, from fear to wonder, from doubt to faith, from bitter to sweet. It’s a perfect description of finding life in Jesus too, joining John Newton in saying “I once was lost but now am found, was blind but now I see.”

    Tim

    P.S. Awesome pic of the kids cuddling in bed!

    • Amy Julia Becker says:

      Thank you for such an encouraging comment–it was helpful for me to be able to articulate how much things have changed with time (and growth…).