From where we sat in our lawn chairs, we could look over the water past a pavilion where volunteers had set up the registration tables, and towards Snowstorm City, where church spires rose gracefully above the trees. Behind us, a group of volunteers were grilling hotdogs and hamburgers. For the hour before the fund-raising walk began, the little park was filled with people, many of them chatting, greeting each other with hugs, and calling out to each other across the lawn. Retired Principal and I were working the table that held the bowl of candy, so we had a chance to say hello to almost every child at the event. In fact, one little boy with dimples came over so many times that we ended up meeting his big sister, who had been assigned to drag him away from the candy bowl.
As the walkers began to arrive, I kept seeing people wearing red t-shirts imprinted with the name and picture of the same child. Then blue t-shirts with a photo of a different child. Then I noticed clumps of people everywhere with matching shirts. “Team Tessa” or “Team Michael,” the shirts would announce. As I began talking to people, I heard the stories behind the shirts. Cystic fibrosis is a disease that affects not just a child, but that child’s family and community, and behind every t-shirt, there seemed to be a network of support and caring.
One woman had a six-month old baby, who had been diagnosed at birth. “But she’s being treated already, and she’s the picture of health.” An older woman said she had a 29-year-old son with cystic fibrosis. The energetic woman who was serving everyone coffee had lost a daughter to the disease, but was determined to keep raising money to help other people’s kids. One man brought his year-old son over to say hello. He’d been diagnosed through newborn screening and was doing fine so far. “The new drugs are doing wonders,” one parent kept saying.
The event organizer grabbed the microphone and herded everyone down to the waterfront for the beginning of the walk. From our table, we watched them: Some parents would be walking with strollers; one young man did the walk in a wheelchair. I could see the woman I’d talked to earlier, the mother of the six-month old baby with cystic fibrosis. Here she was, at the inner harbor on a lovely May morning, surrounded by about forty people who had arrived wearing a t-shirt that bore the name of her daughter. They stood around her, joking about who would carry the water bottles. At a signal from the event organizer, they all started forward, kids and parents and grandparents, coworkers and neighbors and friends, people of all ages, walking together.