Bridging the Gap, or Why I Feel Uneasy About Being Penny’s Mom

I sometimes feel a strange sense of guilt, or at least dis-ease, about Penny. It’s not what you might think. I’m about as comfortable as I can imagine being with a child who has Down syndrome, and I think my kids are too. (The other day, I  was explaining that some athletes from the Special Olympics practice we were about to see might have Down syndrome. Penny did a fist pump in the air and starting chanting, “I’m Down syndrome! I’m Down syndrome!” William piped in, “I’m not Down syndrome! I’m not Down syndrome!” as if they were congratulating one another, and themselves, on these basic truths about their respective identities. I didn’t have the heart to tell them that I prefer person-first language: “I’m a child with Down syndrome!” I just shook my head in wonder at the two of them.)

The reason I feel uneasy is because it’s pretty easy for us to have a child with special needs. It took some adjusting, and I still have the practical challenges of IEP’s and ENT visits and the like. But Penny is healthy, she’s happy, she reads books, she helps with her little sister, she gives me lots of hugs. William and Marilee, young as they are, love their big sister and get plenty of attention from me and other loved ones.

I feel guilty because we have a good life, and Penny’s needs don’t feel any more significant than those of our other children.

Continue reading Building Bridges at Not Alone Parents, where I contribute a monthly guest post.

About Amy Julia Becker

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).

Comments

  1. If your child with Down syndrome is talking and reading and has no major health problems, you are one of the more fortunate special needs parents. But all you do to advocate for our children more than makes up for your ‘luck’. You come out WAY ahead, Amy Julia!

  2. I can’t tell you how much I got from reading that interchange between William and Penny. It reminds me of me and my older sister when we were kids, and the things we’d say to and with each other!


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