I was scared when I found out our oldest daughter, Penny, had Down syndrome. My husband Peter and I were 28 years old, and we weren’t prepared to welcome a child with an intellectual disability into our lives. But the fear didn’t last forever.
Penny took longer to meet her developmental milestones, and we spent more time with specialists than most parents, but she also slept through the night and smiled her adorable smile and gazed at us with her huge blue eyes. It was easy to love her.
Early on, we all learned basic sign language until she could speak words. As she got older, we focused with her on the things she loved—reading books, ballet class, playing backgammon, Taylor Swift. We began to see that Penny could learn and grow, even if it was at her own pace.
We eventually realized that what was true about Penny was true for us, and for our other children. That we all are needy and vulnerable and dependent. That we can ask for help and build relationships of mutual care. That we all are gifted and beloved. That our identity can arise from love, not from achievement.
Now, Penny can articulate her own goals for the future, and we get to help her move towards them. We no longer feel afraid of Down syndrome. Instead, we’ve been able to reimagine a good life based on love.
Workshop: Reimagining Family Life with Disability
MORE WITH AMY JULIA:
- Book: A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny
- Free Resource: Missing Out on Beautiful: Growing Up With a Child With Down Syndrome
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