When I met Mark, however, the first thing he did was tell me about his motorcycle, showing me a picture of it on his phone. We talked at length about helmet laws and riding motorcycles in the rain, and then in the course of conversation he happened to mention his daughter’s lung transplant. It made me realize how much the conference had changed me. I heard him say, “My daughter had surgery,” where before I would have heard, “my daughter had SURGERY.” Just two days ago I would have felt sad, thinking of how difficult it would be to have a sick child. In Mark’s voice, however, I could hear that “my daughter” was the subject of every sentence, whether he was talking about her illness or her horseback riding. We didn’t just talk about the hard things—we talked about how great it feels to ride a motorcycle down a country road. Mark wasn’t a parent with a problem, he was a biker guy who loved his daughter. It was as though a sense of proportion was being imparted to me by all my conversations over the weekend. The talk was a mixture of high notes and low notes, not all of it about Noonan Syndrome, and there was room for all of life’s experiences, room for me, in this symphony.

Listening to the notes struck by different families, I began to understand exactly what I had been so afraid of before the conference. I had been afraid of meeting heroes. I knew there would be people facing enormous challenges and was afraid that my life would seem so small in comparison that I would have nothing to say to them. Having read about Wanda on the web, I was dreadfully intimidated to meet the person who had organized a group serving the whole country while putting her family first. Wanda turned out to be no more intimidating than anyone I met. She exuded the air of quiet preparedness that distinguished all the parents who went to workshops to accumulate information about the uncertain course of Noonan syndrome. These people were too busy appreciating their kids to be heroic; I kept imagining the many children who had had heart surgery as having delicate birds stirring in their chests, and their parents must live with the same vision motivating them to enjoy every moment. The problem with sickness is that it complicates life. Sometimes it threatens to overwhelm the person so that the complications become them. The conference was an assertion that the fabric of everyone’s life was intact. It was an antidote to the other people’s tendency to point out what might be lacking in any given moment, seeing only what was sad about a child with challenges, as I would have only two days before.