The International Rett Syndrome Foundation has a family support program made up of volunteers in each state that reach out to newly diagnosed families to offer support, information, and just a listening ear. It is called the Regional Representative program and a few weeks ago I became the central Pennsylvania regional representative. The rep that helped us through in the beginning, also named Julie, was and is so amazing, and I told her last year that I thought I too would like to be a rep, but I wasn't ready then. A year has passed and I feel like we have gained a significant amount of knowledge and confidence in that time, and I want to be able to do for others what Julie did for us. I want to help educate families in the correct information about Rett Syndrome and reassure any families that may have received outdated and incorrect information from their doctor. And i want to help families that just might feel so overwhelmed, and unsure, and devastated to know that while its not going to be easy, it's going to be better than they might think and it CAN be more amazing than they could ever imagine.
Over this past year I have often thought about the two reactions families could have when given the news that we were given last year: 1.) Denial, rage, defeat. 2.) Rage, acquire knowledge, accept it as best you can, kick Rett Syndrome's ass daily...we chose route two. I want desperately to help as many other families as possible be able to also choose option 2. Not only because it will just make their lives easier and more pleasant, but it is what their daughters deserve!
So, I have decided to change my direction slightly for this blog and begin to focus a little more on what we do each day to help Lu succeed. I know I do talk about some things, but there is so much more that we do all the time, and new things daily, that I want to share how great each girl's quality of life can be with other parents and our family and friends. Giving Lucy and her Rett sisters the life they deserve is all about adapting, thinking outside of the box and trying to not long for the inside of the box because it is simply not part of your lives anymore. It is all about a "can-do attitude"! I know that sounds corny, but it really is. However, it is also a difficult balancing act to also remain realistic (not pessimistic). Every day I say, "Lucy can do it!", but there really are things that she just can't do. Families have to learn what just isn't going to happen and what can happen with some creativity!
Yesterday Lu said with her PODD, "I want to, play, dolls, go to bed, sleep, wake up. I like this, fun, lucky." And so then when we were playing dolls she said, "More." with her PODD. And she also said, yesterday, "Let's go, library." So I used her PODD to ask her what kinds of books she wanted to get at the library. I asked her if she wanted a book about a particular animal and she said yes and then found "tiger" and said yes to that which was funny because I didn't know she likes tigers! It was totally awesome! I get excited to imagine when she's older and she can tell me what she wants to learn about (even more so than she does now!) and how she wants to learn it, and more of what she thinks and feels and likes, and I just feel so proud of her for how determined and positive she is. Here's a picture of Lu with her dollies after we wrapped them up and put them to bed, and also a picture of her "shopping list" for our library trip tomorrow!