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.
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