Noonan Syndrome Support Group
Conference 2007: Zero Gravity
     by Kim Puchir

 

Sarah

People were not merely surviving, they were thriving. There were kids running wild. Several of us at dinner were transfixed by Sarah smearing chocolate over her face in an excess of vitality. This vision had to be stronger than any teasing the kids would experience in the coming year; it had to be stronger than any perception of these kids as anything other than beautiful. The group picture had been such a joyful chaos because everyone was rushing to document freedom with photographs. Throughout the weekend you could hear Rick’s voice calling out a name (“You’re amazing!”) and everyone would smile, knowing someone was getting their time in zero gravity.  It was important the way children see play as important: having fun was an integral part of the process.


I had so much fun that I gave up on taking notes and just enjoyed getting to know a wonderful community. Positive Exposure manages to do something very difficult: it captures a state of mind. Now I can look at the photos from the conference and see again the beauty I discovered that weekend. Thank you to everyone for sharing your stories with me. And thank you for laughing more than I’ve heard anyone laugh in a long time.