Sunday, October 03, 2010

October is Rett Syndrome Awareness Month

Sometimes along the journey we call life, we are hit with unexpected bumps in the road. Bumps in the road can test us to our limits, and sometimes leave us wondering "Why me?" When I gave birth to a baby girl in August of 2003, I was a new mom expecting smooth sailing. Caitlyn Theresa, we called her. She was the perfect baby. She never cried, she slept through the night by 6 weeks, she never had any kind of separating anxiety..did I say she never cried? She was everything I had expected motherhood to be!
Nothing changed over night. I wonder how that would have changed how I felt about it all. In Rett Syndrome, there is a period of typical development for the first 6-18 months. Then things start to change. Caitlyn followed that pattern. She developed at the later end of typical for her large motors, sitting at 8 months, crawling at 10 months, and walking at 18 months. At one year old, she was curious. She said a few words, and was beginning to develop an absolute love for coloring! She would hold the markers and get right down by the paper, and color these beautiful age appropriate lines.
Around 15 months, stuff started to change. Looking back, I remember how quiet she got. No
words, not even babbling! She also got pretty sick, so we weren't too worried about the lack of language development. At about 20 months, she started Early Intervention services at the Birth-3 center. She had wonderful loving therapists on her team. She wasn't making any progress in speech therapy and she had started to "tremor". We took her to see a neurologist. They wanted to first test her for Rett Syndrome and Fragile X to rule them out before going further in the journey to find what was wrong.
One of the hallmark characteristics of Rett Syndrome is the involuntary hand movements. So I figured we didn't have to worry. I read everything I could about Rett Syndrome, and knew it wasn't my daughter...Two weeks later, I had read everything about Rett Syndrome, and knew it WAS my daughter! Within two weeks she started tapping her hands together, and tapping her chest. On January 27, we found out what we already knew. Caitlyn had Rett Syndrome.
You can read back here about the bumps Rett Syndrome has brought to our lives. Times have been down right difficult, and times have been exciting and happy! The more we live our journey with Rett Syndrome, the more we come to really realize that Rett Syndrome is just a small part of who Caitlyn is. Today she is a happy 7 yr old full of energy! She loves hanging out with friends during lunch and recess. She gets excited to try new things, and go places with mom or dad. (even more so when she has mom/dad all to herself!)
Through the journey of a bump in the road, you learn to deal...I once heard it said "If you can't get out of it, get into it." Two years ago I hit a high point in our journey. I realized although Rett Syndrome sucks, it has touched my life in amazing ways. Here I talked about the ways Rett has touched my life. Today I learn Rett Syndrome has also prepared me for being the mother of a typical child. I cherish every little thing my son does. Things that many parents may take for granted, or even be bugged by. I love the messy meal times...I love the crying when hungry.
I have dived head first into the world of disability. I come from a political family, and was so sure while growing up that I would never enter into that life. I didn't like being in the spot light, and I still don't. I have realized that my role as an advocate is pretty political. I took on the role as Regional Rep in Washington for IRSF, then I took a position on the Board of Directors for the Arc of Washington. I can't get out of the world of disability, so I jump in feet first and change the things I can. I fight every day to make the life Caitlyn leads the best it can be!
Wondering about what Rett Syndrome is? Read my Rett Syndrome awareness post from 2008. For more information, or to donate to Rett Syndrome research, visit