Thursday, June 14, 2012
A weekend ago I walked into my regular Starbucks. A customer was talking to the barista and gestured to me. I couldn't figure out why. Had I done something odd? Did she know me?
Imagine my surprise when the barista said this woman, named Michelle, was paying for my coffee! She had attended our BLOOM speaker evening with author Amy Julia Becker and wanted to thank me.
We got to talking and Michelle told me about her awesome son Emerson, 4, above, who has a rare genetic deletion on chromosome 18. My son Ben has a genetic deletion on chromosome 8.
That Monday Michelle e-mailed me, identifying herself as the "Michelle from Starbucks."
This is a story about a trail of connections that never would have occurred without the Internet.
Michelle met me because she came to hear A Good and Perfect Gift author Amy Julia Becker at Holland Bloorview.
I connected with Amy Julia in 2010 by chance when I read an online comment she made on a New York Times blog about whether we should research a "cure" for Down syndrome. She wrote, in part, about her daughter Penny:
"It's hard to believe that she won't be able to solve problems or read literature. And yet it's easy to believe that she will rush to a friend, or even a stranger in need. Easy to believe she will bring joy and light and life. Can she live a full life without ever solving a quadratic equation? I'm pretty sure she can. Can I live a full life without learning to cherish and welcome those in this world who are different from me? I'm pretty sure I can't."
That comment resonated with me, and imagine my surprise when a few months later Amy Julia, who lives in New Jersey, posted a comment on BLOOM and I recognized her name.
Since then Amy Julia has written for BLOOM -- and written a book! -- and we've had a number of fascinating conversations about human value and what it means to live a good life.
Last month she was flying in to Toronto to do an interview about her book and came directly from the airport to speak to parents at Holland Bloorview -- including Michelle, who was able to speak one-on-one during the break.
Meanwhile, a couple of weeks ago, The Four Walls of My Freedom author Donna Thomson (also a recent BLOOM speaker!) posted about Positive Exposure, an amazing New York organization that promotes the beauty of children living with genetic differences. Donna linked to this Ted Talk by Rick Guidotti, the former fashion photographer who founded Positive Exposure and travels the world taking pictures of children with genetic syndromes.
I spoke to Liz Grossman, the group's program director. Liz's initial link to Positive Exposure was her 12-year-old daughter Talia, who has a syndrome called 18q-. Talia is now an avid blogger with an education program called PEARLS run by Positive Exposure. Youth with genetic anomalies blog about their lives and students in high school read their stories as part of a curriculum about genetic diversity.
My student Megan interviewed Liz and Rick for our upcoming BLOOM magazine.
When my Starbucks' friend Michelle mentioned that her son had a condition involving chromosome 18, it rang a bell. I remembered what Liz had told me about her daughter. In fact, it sounded like the same diagnosis.
So I asked Liz, who lives in New York, if Michelle could contact her. "Yes, please give her my email," she messaged back.
I passed Liz's contact information to Michelle and she wrote back: "Wow, I hope you enjoyed your coffee last week because it's clearly the best coffee I've ever purchased!"
The special-needs world is a small one, thanks to the Internet.