We are a talkative family. Peter and I find ourselves narrating our lives with statements most people find superfluous: “I am going to get the mail,” or, “I’ll be right back. I’m going to get a glass of water,” and so forth. Our kids have taken on the same pattern. “Look, Mom, it is a beautiful day!” William might say. Or, “I am drawing a picture,” Penny might tell me, even when her actions are rather obvious.
We try to talk about the more serious stuff too. We talk with our kids, in simple terms, about the fact that Peter’s mother (Grand Penny) died. We talk about our feelings. And we talk about the fact that Penny has Down syndrome. But it was only a few weeks ago that she said it back to me.
“I have Down syndrome,” she announced on our way to school.
“Yes, you do.”
She told me that another boy in her class also has Down syndrome. “You thought it would hurt me,” she added. (She likes to hear her birth story, and I always include the diagnosis as a part of the narrative.)
“That’s right, sweetie, but then I found out that it wouldn’t, and so I wasn’t sad anymore.”
Last Saturday was the date of our local Buddy Walk. The Buddy Walk began almost 15 years ago as a way for local groups to come together for a fun day, to raise community awareness about Down syndrome, and to raise funds. So we told Penny that she would get to see lots of other people with Down syndrome at the Buddy Walk. She wasn’t very impressed:
It was cold and windy, and big crowds, in her words, “make me nervous.” With more than 2,000 people in attendance, she didn’t see any friends from school, so it was a family day more than anything else:
But I hope it was also a day where Penny and William began to see themselves as a part of a community that goes beyond our family. And I hope it was a day where we participated in telling a story that goes beyond the car ride to school. A story that began with sadness and fear. And that has resulted in promise and joy.
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