We took a weekend trip back to Texas for a getaway to visit with the cousins. The girls always have a blast on these trips and it feels like a mini-vacation, complete with jumping on hotel beds, pizza and princess movies, an afternoon in the pool, and lots of games of chase in the hotel hallways (sorry for those trying to sleep!). And no cousin reunion is complete without matching superhero capes!
The phrase among our small Rett community today has been, "dare to dream" as exciting news on the research front has been announced by IRSF! The news came on a day when I needed a glimpse of hope, something to remind me that it is okay to dream of a cure for my girl.
I have learned that one of the many stages of grief is acceptance. It does not mean that I have to like Reagan's diagnosis, but on most days I go about our daily life and accept our new reality. It has taken about 2 years to get to this point. There were many days of crying over lost dreams for my daughter before I came to terms with her diagnosis. So it is a rare day lately that the "what if's" get me down as I try to keep those thoughts out of my head. But there are still days that it hits me out of nowhere and my heart breaks for my baby girl and last night was one of those moments. I was putting her to bed and just became incredibly sad and the tears started flowing.
Today the tears were for a different reason, they were for hope after reading this news update about the possibility of an upcoming clinical trial that will help children with Rett. Here is the link: Rett clinical trial information.
Hi and welcome to our family blog! We have a 4 year old daughter, Reagan, who has Rett Syndrome and a 2 year old daughter, Lauren. This blog is to help others understand Rett Syndrome and to share our journey.