Let me just share our day today as an example of life for a family with a child with Down syndrome. I awoke to all three kids at 7:30 (we’re on vacation). Penny stood at the side of the bed, glasses askew, hair poking up, lips puckered for a kiss. She spent the following hour coloring while I made gazpacho. She helped her dad produce a schedule for the day to tape to the refrigerator. She and William tried to share the space on the sofa, lying side by side. They fought. She said, “I just can’t handle it, Mom.” She and her siblings spent the morning at the beach. After lunch, they went to the pool. She and William are now at a tennis lesson.
That’s one of the most boring paragraphs I’ve ever written because it describes such a typical day in the summer for a seven-year old kid. But Penny’s life can only be like this because of the beginnings of a cultural shift in attitudes towards children with Down syndrome. That cultural shift is happening–in education, in medicine, in families, and it begins with the information that women receive from doctors and genetic counselors after a prenatal diagnosis of Down syndrome.
This week, a purchase from Sevenly, a leading organization in social entrepreneurship, will provide funding for a book that gives critical information to expectant parents who have recently learned about a prenatal diagnosis of Down syndrome. With your support, parents will receive tools and support that will help them prepare for the challenges and rewards in store for them. Lettercase provides information and support right away for expectant parents at that overwhelming moment when they first receive a prenatal diagnosis of Down syndrome. Their books include balanced, accurate and up-to-date information in English and Spanish about common medical conditions for people with Down syndrome, available health and education services, resources, and authentic photos of people with Down syndrome in ballet class, on the playground, in school, and at work.
Seven years ago, our daughter Penny was an infant, and I wish that Lettercase had been available then. I knew from my experience of our daughter that she was beautiful and bright and fun and delightful. But most of my reading about Down syndrome led me to continue to fear for her future. Lettercase’s booklet provides a realistic portrait (through photographs and words) of life with Down syndrome, a portrait that has played out in our life. So please add your support to the Lettercase effort by purchasing something from Sevenly this week. You might just help another family have a boring-to-write-about-but-delightful-to-experience day in the future.
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).
About the Blog
This blog is about discovering and remembering thin places, places where heaven and earth touch, where God seems more readily present, more easily accessed. It is meant to uncover ideas, relationships, points of connection, and moments of deep beauty that draw us towards one another and towards the Holy One.