While I can't say going to The Today Show at 6 a.m. in the midst of a huge monsoon was on my bucket list, I knew I'd completely regret it if I didn't go! I heard through the Rett-vine that some Rett parents were planning on going on Oct. 1, to kickoff Rett Syndrome Awareness Month for October. It was also the morning that it was officially announced that IRSF won the Pepsi Refresh contest, giving $250,000 to the foundation that was also matched by The Pioneer Fund, totaling $500,000 that is going toward research.
I stepped out on the stoop in my big rain boots, a rain coat, an umbrella and my IRSF hat, with my Girl Power 2 Cure "flower power" pin. I couldn't go without it! One of the mom's handed out purple CURE RETT SYNDROME t-shirts and we all huddled under umbrellas as the rains came down. I met some beautiful women and a few of their beautiful daughters were there. Everyone was so excited and enthusiastic. I can't help but look up to every Rett mom I meet as a hero, a pioneer, a warrior.
Lately, we've been receiving little packaged moments of joy, when Anna smiles to say "yes" or gives "the mean eyebrows" to say "no" or commiserates with Gabe when he is sad or upset or laughs out loud when he is happy. While Rett totally sucks, it doesn't take away everything. And, in this case, look at what it takes me to task to do... And who to meet.
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