Here I am again, flying across the country but this time I am going home! Better yet, there’s 49 days before we fly back across the country to Boston. I had an amazing time at the conference. It was fairly exhausting between the red-eye to get there and maybe staying out later than I should having ridiculous amounts of fun. Yet the fatigue doesn’t compare to the overwhelming sense of community and hope that I am leaving with. I think about the “first timers” that were honored on the stage, for being at the first conference 30 years ago. I think about the doctors that spoke, people who have dedicated their lives to helping the families in Rettland. I think about Emily Perl Kingsley and her story of writing for Sesame Street and her journey as a special needs parent at the same time. I am so blessed to be walking a path paved by all these brave people.
Then I look around and I see a bunch of newer faces. Families that are just coming in and making courageous strides as they do. There was the dad who ran 150 miles in 5 days for his 5-year-old daughter with RTT. A panel full of brave young siblings, who shared about living with a sister who can’t say I love you. There were so many families with neat stories of what they are doing to continue to build on the strong foundation that was first started 30 years ago.
I was reminded that in Rettland the people laugh harder, love more and cry whenever they please. Rettland is a community of connected people all doing whatever they can, even if it is just getting by. It’s a place where sisters set up shop and make bracelets because they want to be part of a cure. I was reminded this weekend that Rettland is filled with lots of people and a beauty that can’t be captured in words.
Lillie’s big sisters set up a table to sell bracelets to raise money to cure rett. Best $2 I ever spent!