Welcome to the Family

This is Caitlyn, just a few months before diagnosis

Three years ago today, we had an unexpected and uninvited visitor come to our home. We tried so hard to run it out, but it kept taking over our lives. It brought with it things that I never knew about, and didn't really want to learn. It took things away from Caitlyn that weren't fair, and told us it wasn't giving them back. It made the doctors think that Caitlyn was going to mentally be a 2 1/2 yr old for the rest of her life. (ok, that doctor hadn't met IT) When we learned it's name and found out where it came from, we hated it even more. Here was this thing that we didn't want in our lives, and it was taking over! It took my daughters love of coloring...It took her ability to speak, it made her hold her breath and hyperventilate...It brought with it seizures, reflux, stereotypical hand movements, irregular breathing, stares from strangers and a whole lot of other things I'm sure we haven't found yet. It let little surprises for us all over the place! For the first year it was with us, on the the good days I could forget it was here. On the bad days I hated it! I hated what it was doing to my family. It changed our lives forever.

On the first anniversary of it's arrival I cried and cried and cried. I asked it when it planned on leaving us alone! Last year as we came to realize it had been with us for two years, I didn't let it effect my emotions...But I still wanted it to leave us alone!

Today, I can say "Welcome to the family, Rett Syndrome." Although there are still moments that are difficult, I can say with a smile on my face that it didn't just bring bad! When Rett Syndrome came into our lives, so did our ability to adapt. It brought with it an amazing appreciation for all things God creates. Rett Syndrome introduced me to some amazing people. I met people that knew Rett Syndrome before me. There were special people (thanks Rose Marie!) who made me realize that Rett Syndrome didn't have to be all bad. I learned to take my life slower, and not take anything for granted.

Yes, I still want Rett Syndrome to leave us alone. And I hope and pray that one day it will decide it is done visiting us (and all of the other children it lives with) and leave. There are still days that I strongly dislike the fact that it chose to be in our family. But, just like anything else it is still part of our family.

Acceptance is huge. I don't know that I am 100% there, but I am so much further than I was 3 years ago.

Rett Syndrome introduced me to some wonderful women through the Snohomish County ARC who made me realize I had what it took to fight, and be an advocate for my daughter and others. The ladies there have been amazing sources of information and support. I love you guys!

One day in July, shortly after our diagnosis, there was a comment on my blog. It was from a mom living in Singapore at the time, that had just received news that Rett Syndrome had also joined their family. My heart broke for them. For some reason this was the first time I realized we weren't going to be the last ones on earth to learn about Rett Syndrome.

Another mom came along (and she wasn't the only, but was the first) that told me I was an inspiration. I guess somehow through my blog writings I was helping other mom's (and dad's) realize that they could live with Rett Syndrome. She is now my inspiration in everything that I do. (Thank you Kelly B. for inspiring me) Why should I sit back and live with Rett Syndrome, when I can help other families see that they too can live with it.

As mad as I was the day Rett Syndrome joined our family, I can only thank it for the things it has changed. I have made amazing friends because of something so horrible.

Rett Syndrome, welcome to the family. But don't get too comfortable, because there are some pretty cool people out there that are fighting like crazy to find a way to make you leave!!

Caitlyn now