I am a musician, and oftentimes I will use songwriting as a way to work through difficult situations in my life. On my latest album, Grown Up Love, there are two songs that emerged directly from my family’s experience with Rett syndrome. “The Diagnosis” deals with my immediate reaction to the news — the refrain includes the line “hope will light the way on the darkest of all days.” I don’t believe I could have sung that without my transformative phone conversation with Monica. “Lucky Us” is an understated anthem I wrote to remind myself to remain grateful for all the beauty in our lives, despite our burdens. Thanks to family, new friends in the Rett community, and RSRT we feel so lucky.
Another blessing of connecting to RSRT was starting our fundraising campaign, A Cure for Carmela. Tim helped us set it up, and we sent it out to all our friends and family, many of whom we hadn’t talked to or seen in years. The outpouring of support was monumental. Big help came from the most unexpected places, and we rekindled ancient relationships with long-lost friends.
Thank you, RSRT, for being a beacon of hope lighting the way through our darkest days.