A New Story for Down Syndrome"I wonder if there's any hope of entering an age with a new story, a story that isn't as dramatic as Heath White's or Chloe Ashton's, a story that doesn't rely upon an entry point of grief, a story that doesn't need the tension of transformation."Amy Julia Becker
There's a video making the Internet rounds. It introduces us to Heath White, a father who didn't always love his daughter Paisley. Heath reads a letter in which he confesses that before Paisley was born, he urged his wife to have an abortion. Paisley was prenatally diagnosed with Down syndrome, and Heath was devastated by the news. As Heath tells it, he wasn't really worried about Paisley. He was worried about himself, and about how a daughter with Down syndrome would shatter the image he had of himself, an air force pilot, a marathon runner, a perfect student with a perfect family. His wife refused an abortion, however, and a few years later, Heath describes the way he came not only to accept his daughter but to take great delight in her and to count her as his pride and joy. Heath White's story is unusual only in that it has been viewed by nearly one million people.
Plenty of memoirs, including my own, relate a similar set of emotions, from grief and despair to acceptance to wonder and joy. On countless blogs and in articles and interviews, I have told the story of our daughter Penny, who was diagnosed with Down syndrome a few hours after her birth. I have described the initial sense that I was drowning and might never come up for air. I have written about the early months of wondering if it might be OK after all. And I have told story after story about the delightful ordinary life of our daughter. She rides the bus to school in the morning. She has play dates and goes to ballet class and started piano lessons last week. She adores the Clementine books and isn't a big fan of animated movies. She fights with her brother and sister and whines to her mom and dad. And we can't imagine our life without her in it. It's a story worth telling, because our culture still believes what we once did – that Down syndrome is cause for grief. Many of us who have children with Down syndrome want the rest of the world to know that we were mistaken in our initial assumptions and emotions. We want the world to know how much we celebrate our children's lives. And so we tell the story, from grief to hope, again and again.