When our daughter Penny was diagnosed with Down syndrome shortly after birth, I discovered that I had unwittingly believed two lies. One, that our identity arises from our abilities, or, put another way, that who we are is determined by what we can do. And two, that if we fall into the category “disabled,” we don’t have much to offer.
Penny’s diagnosis came with two guarantees, according to the doctors: she would have low muscle tone and mental retardation. She was? would be? disabled. And since I had always believed (even though I wouldn’t have said I believed it) that identity comes from ability, I thought I no longer knew who my daughter was. And because I had also assumed my identity as her mother arose from her abilities, I also thought I no longer knew who I was. And so I lay in a hospital bed holding my daughter, my beautiful daughter with long eyelashes and pouty lips and a full head of dark hair, and I felt as though I had been set adrift in open water.
And yet I did know who she was. I knew she was ours—that her cheeks came from me and her lips from her dad. I knew she was named for her grandmother. I was scared my love for her might fade away, that her disability would somehow make it seep out of me over time. But I also knew, as my body began to wake up to the reality of becoming a mother, that for the time being my heart was full with fierce and protective love. She belonged to us. And I knew that she didn’t really belong to us because she belonged to God.
In time, I came to understand that Penny’s identity is rooted in her belovedness. The belovedness, first and foremost, that comes from her heavenly Father, that was bestowed upon her regardless of ability or aptitude. The belovedness that extends to me and frees me from thinking that I have to prove myself or work harder to discover who I am or what I am worth. The belovedness that offers us all an opportunity to discover not our identity but our giftedness, the particular ways God has fashioned each and every one of us for service and blessing and joy within the church and the world.
I suppose I could say that Penny is my daughter with a disability, Penny is my daughter with Down syndrome. But I am far more likely to say that Penny is my daughter with the gift of compassion for others, my daughter who makes her brother and sister giggle, my daughter who loves to read and sing and write letters to her friends. I could say she wears glasses and braces on her ankles and has trouble controlling her hands. But I am far more likely to say that Penny is the beloved one of God.
Amy Julia Becker is the author of A Good and Perfect Gift: Faith, Expectations and a Little Girl Named Penny (Bethany House), named one of the Top Books of 2011 by Publisher’s Weekly. Amy Julia lives with her husband Peter and three children, Penny, William, and Marilee, in Connecticut.