October is Rett Syndrome Awareness Month

It is Rett Syndrome Awareness Month and this holds a very special place in my heart. Last October I received a call from one of Claire's
doctors, the test for Rett Syndrome came back positive. That call did not change Claire, who she was or what she would be. It gave us an answer as to why. Why had she stopped feeding herself and crawling. Where had our sweet girl gone? We learned that she was in the "rapid destructive stage" and that was the cause of her frustration. Today I am proud to report that she has returned and is in the next stage. Daily she is making progress and surpassing any and all expectations. She is able to use her walker with assiastance and has been challenging herself while standing. Claire has made incredible strides in her oral motor skills and recently told her speech therapist that she was "done" once annoyed with the activity, a word that we have been hearing a lot more of. It is amazing to see Clarie do things that we never knew she would do. I love how she is contributing to our lives and the lives of everyone around her. If you would like to make a contribution to the International Rett Syndrome Foundation on her behalf we would be grateful. You can click here and visit the Care and Cure Cafe to see Claire's biography and make a toast to her. Thank you very much to all of the people that have supported us and prayed for us along the way. Thank you also to Mr. Mueller, who was able to capture an amazing picture of Claire, a little girl who doesn't really sit still.

Split between two worlds

When I woke this morning I knew it was going to be a good day. Claire was asleep and I was able to spend a few extra minutes in bed listening to the rain as it clinked in the gutters. Once we got up we were off to the Abbey to have tea with friends, the perfect drippy morning activity. As we walked in Jeff Buckley was belting out "Hallelujah" through the speakers and I smiled as I thought about what a perfect song that was for that moment. The rest of the day went well. Claire napped and had a great PT session, I got lots of calls made and bills paid. Since I had a babysitter for the late part of the afternoon I thought that I would go to the nail place and get shined up for our trip back to Arizona. It has been a year and a half since I have embarked on an adventure like this. It was surreal. I decided that since I was there and this doesn't happen often I would get both a manicure and a pedicure. I was a little surprised that I was able to accomplish both tasks at once, something that I never would have dreamed of. It made me start thinking about the whole interaction. It seems that there is a large demand for people to be rushed through their relaxation. I thought that maybe the girls were just trying to get me done so that they could be ready for the next person. Then I listened to the people around me. One lady said to make sure to put the rhinestones on her toes and three minutes later told the man to never mind, she didn't have time for it. Another lady sat and chatted on her phone bragging about how she was leisurely enjoying her time at the salon, although she had just rushed in and told the people that she needed everything done quickly because she was already running late. How sad that our culture is such that people want their nails painted but can't wait for it to dry. I think that in the future I will stick to tea at the Abbey and steer clear of the salon. Now I have to go get this stuff off my fingers, it's creepy looking.