I think I have posted here once before how much I enjoy Thanksgiving. The reason I enjoy Thanksgiving is because it is the one holiday when Caitlyn's limitations don't stand out. Sure, we have to feed her every bite, but she loves to eat!
Christmas is hard. The month of December is really hard. First off, it was December of 2005 when we first learned of what Rett Syndrome was. 6 weeks later we sat crying in the doctors office getting the results that would forever change our life. I am to the point where it pains me to even wrap Caitlyn's presents. I think to myself "why am I wrapping these, when I'm the one that has to open them?" We just wait until Christmas morning, then put everything under the tree unwrapped. It is really hard to shop for her too. I spend hours walking up and down the rows and rows of toys at Toys R Us looking for a toy that is both age appropriate, and safe. I just can't bring myself to purchase a '6-12 month' toy for my 5 yr old.
I really hate Rett Syndrome some days. I hate what it has taken from my daughter, but I hate even more what it takes from other kids. I can't believe that the thing that is responsible for Caitlyn's challenges can look so much more evil to another family. Caitlyn lost her words and her ability to use her hands in most ways, but she can still feed herself if she really tries, and she still holds her own cups. And she can walk. Don't get me wrong, I am thankful for what she does have. But I hate that there are other families that have lost so much more because of Rett Syndrome. Families who's daughters could once crawl, or walk. Families who have had to learn to use a feeding pump because Rett Syndrome has left their daughter so thin. Families who's daughters have lost all use of their hands. Rett Syndrome is such a difficult thing to face, I can only hope that despite the differences in our girls, we'll all come together and not let Rett Syndrome run our lives.
This year we will fight to make the most of the Holidays, and not let Rett Syndrome decide how we feel. I always loved Christmas growing up. I guess we just need to find our way...If our way means not using wrapping paper, then so be it. We need to make the season enjoyable for Caitlyn, some how some way our family will figure a way to make it through the Holidays.