If you’ve been around my blog for a while, you’ve heard me mention Amy Julia Becker. This past fall, her book A Good and Perfect Gift — about how her experience with disappointment turned into overwhelming blessing — sat on my bedside table for a few weeks because I just didn’t want to finish it. I didn’t want my experience with her book to be over; it was that good. Her words, which you’ll hear a snippet of below, stretched both my mind and my heart. Amy Julia and I were, first, friends by default, as our husbands lived together in college. But since, we have formed a sweet (and separate) friendship. She has become a steady encourager to me as I write. I’m excited to “share” her with you today!
For the month of May and a week into June, I will be pressing pause on my online writing and this space will become a series of testimonies of what He births in the midst of delay, perplexity and pain. Author friends from around the world, who love words on a page (and Him even more), will share, here, how they have seen Him make the bitter, sweet.
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.
Amy Julia Becker is the author of A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny and writes daily at Thin Places. She lives with her husband and three children in Lawrenceville, NJ.