Many of us can attest to the fact that WSA conventions have an effect on cities and their people in addition to our attendees. WSA staff hears hotel workers marvel at the friendliness and energy happening in the lobby (and say things such as “it’s going to be boring next week when we only have sports tournament guests"). We hear that the captain of the pirate ship for one of our adult outings in the harbor in Baltimore was really touched by the joy he witnessed. People who had never heard of Williams syndrome, like the many staff at restaurants in Little Italy in Baltimore, do now! All this spreads the awareness of Williams syndrome and highlights the influence.
We know parents learn valuable information from the educational sessions, that individuals and their siblings have a blast during the day programs/camp, and that families from across the country reconnect or connect for the first time (many of whom are “friends” via social media and are thrilled to meet for the first time). Jenna Garrett, mom to two-year-old JoLynn (pictured with her friend Maya) posted on Facebook her reflections of the reach our convention can have and it resonated (and was shared quite a bit). We loved it and thought it summed things up so well. Here’s the post:
As we left the Williams syndrome convention this morning, an employee of the convention hotel approached me in the lobby restroom. She had heard Jo from her office around the corner - saying hi to the people in the other stalls, singing happy birthday to the toilet, and asking “where are my friends?”
“I am so sad your convention is over,” she said to me, as her eyes filled with tears. “You can’t imagine the impact your kids have had on all of us.”
She went on to explain that this week has filled her bucket and given her a new perspective. For the first time in years, she looked forward to going to work every morning, and her cheeks hurt at the end of the day from smiling so much. She even noticed her coworkers being kinder and more patient to each other. “This experience is going to stick with me for a long time, and I’m gonna do my best to channel your daughter and her friends from here on out because I don’t want this good feeling to go away.”
This week was so many things to our family – beautiful, challenging, motivating, overwhelming, humbling. It was the first time we’ve felt truly safe and understood in two years since Jo’s diagnosis, and it was magical to spend some time in a bubble with our WS community. That being said – our last encounter made me realize that the difference between me and my daughter is that to her, there is no bubble. While we spent some cherished and important time looking inward, our kids with WS were busy looking out and inviting others into the fold, and lighting up our little corner of the Baltimore Inner Harbor with their smiles. I am more overwhelmed, honored, and grateful than ever for the privilege of knowing and raising JoLynn.
Have your own story about how #SetSail2018 affected you or someone you know or witnessed? We’d love to hear it! Email us at firstname.lastname@example.org.
**Lobby Photo: the crew: Maya, Coralee, Oliver, Penny (sister to Oliver), and JoLynn