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Down syndrome and Community

I have a new post on Bloom–Parenting Kids with Disabilities, "Friends in Need, Friends Indeed."

It begins:

I have 300 new friends. Well, not really. But last week, a woman who knows I write about having a child with Down syndrome sent me a Facebook message and a friend request. I responded. She then "suggested" approximately 300 new friends, all men and women (but mostly women) with children with Down syndrome.

On one level, these are artificial friendships. I've never met these people. Perhaps one day when I get my act together and attend an NDSS Convention, I'll get to shake their hands (or, more likely, give them a hug). For now, they are just names and faces on a social media network. But if there's one thing I've learned these past five years of having a child with Down syndrome, it's that the connections with other parents are real and lasting and sometimes hard to put into words. I think it might be akin to serving in the military—a common experience of hardship and friendship and transformation that is difficult to explain to those who've never been through basic training.

Last December, I finished writing A Good and Perfect Gift, a memoir about the early years of our daughter Penny's life. Penny (above centre with brother William and sister Marilee) was diagnosed with Down syndrome two hours after she was born, and perhaps the more accurate way to describe the book is as a memoir about how I came to realize that although Penny was not the child I had expected, she was exactly the child I wanted. I used journal entries and photographs and notes from meetings with Penny's various doctors and therapists to construct a narrative of those first few years, and when I handed over the final draft to my agent, I thought the story was complete.

About a week later, she wrote back. "Do you have any friends who have children with Down syndrome? Anyone who supports you? If you do, it seems like you should mention them in the book."

To read more, click here.

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