And I’m spent!


I last blogged just before we headed up North for Erika’s Dream. It was an amazing weekend. I wore what will most likely be the most fabulous shoes of my life (after wearing them once I’m good for another 30 years). We saw many of our Rett family and were joined by our friends Rick and Rachelle. For the first time in four and a half years I was confident that the girls were fine and I was able to really exhale. I woke Sunday morning at about 4:30 so excited that I couldn’t go back to sleep. I just kept thinking about what Dr. Jones (one of my favorite people on the planet) said in her speech the night before, “Rett Syndrome is no longer considered a degenerative condition.” Those words carry so much weight in my heart, in Oct. 2007 when we got our diagnosis it was thought to be degenerative. In 2008 I was told by the school that having Rett meant that you were mentally retarded (they used nicer words, but that is what they meant). On Wed. msnbc.com had an ad for IRSF on their homepage, that night Charlie Rose had Dr. Huda Zoghbi, one of the researches who found the MECP2 gene in 1999 on a panel that discussed early brain development and the role that Rett Syndrome is playing in how scientist understand it all, really amazing. The next day Dr. Bird (rett expert that reversed it in mice) released a paper that redefined what was thought to be understood about how the Rett Syndrome protein worked. So it has been a pretty exciting and emotionally exhausting few weeks for me in Rettland. While all this was swirling around in my head we went to Disneyland for Claire’s big trip, Chloe figured out how to crawl, pull to stand and is nearly climbing. All in all I do think that Feb. 2010 was one of the greatest months of my life. As intense as all of it has been, I hope to just remember it as the month that I wore the most fantastic shoes ever!

One thought on “And I’m spent!

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