Yesterday we met Dorothy and Jon Shuler and it was so important and meaningful to us. We don't know exactly why this is or what it was, but the Shuler's were the very first SMA family we reached out to. Just after being diagnosed, given little to no hope of a treatment or cure, we went through a period of denial and wanting to shelter ourselves from the harsh reality of this disease. And, frankly, we didn't want to be part of this club; this club of infant loss, devastation, and lives torn apart. So, we didn't jump into the SMA world head first; we peered in anonymously, read the chats, looked at blogs, etc., but we were not active and weren't sure we wanted to be. But the Shuler's, and their darling, sweet little Owen drew us in…and ultimately changed our lives. And we are the better for it because the families impacted by SMA and the friends who support them, are the most remarkable people I have ever known.
So yesterday, after over a year of corresponding, we finally met Dorothy, Jon, Aunt Moe, and Lauren in person. We even got to meet Lauren's charming parents and husband. We had a wonderful time, gabbing away, talking about all things SMA, and all things not. We got to hear the details of the amazing thing Dorothy did on Sunday, August 16th, the day that marked the year anniversary of losing her darling baby boy — running the San Diego half marathon! We felt as if we were with old friends… family. They are truly remarkable, fun, incredible thoughtful people. Simply extraordinary people.
And little Miss Sunshine had a grand old time, too…especially when presents were involved (she's a smart girl!). Here we are wearing our Fight For Owen and Sophia's Cure bracelets. What a memorable, wonderful day for all of us!
