It has been Rett Syndrome awareness month and I’m pooped. We went to three events within a three-week period and I’m emotionally exhausted from all this fundraising and general aware-ness raising. I do the fundraising because I love Edda. However, I’m a cynic and general pessimist and I no longer believe that a cure is around the corner. It is too difficult for me to keep on hoping that Edda might someday be miraculously be able to talk, feed herself, go to college, get married. These dreams for Edda are no longer part of my world. My dreams for Edda are simpler these days – is she loved by friends and family? is she exposed to new experiences? is she making the most of what she is able to do? how am I going to get her into those fashionable skinny jeans? The stroll-a-thon (which was the last of the three events) happened yesterday and I’m glad that the stroll slid into the hours of Sunday night dinner. I’m glad I got to go from being surrounded by my Rett Syndrome family to my own family. I’m so glad that Edda got to enjoy the new Ben and Jerry’s flavor, Schweddy Balls.
It was a nice quiet evening (except when everyone started dancing!). Now if only Jeremy had shaken his booty…
