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.
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6 comments:
Yes, Christmas is a tough one....and birthdays!
But we are wishing you a very Merry Christmas an hoping for a wonderful days filled with smiles and love for Caitlyn!
We love you guys!
Hugs, Rebecca! I know exactly how you feel. But like you said, you should be so proud of her for what she can do not the other way around.
XOXO from your Alabama family!
Christmas is perhaps the hardest for me too! Before diagnosis, everyone always said, "she'll be able to open presents next year" but now we know differently so i had the same discussion about wrapping paper! Hang in there and do whatever makes your sweet little family happy! Despite the pain Rett causes, it leaves us thankful for our girls' abilities and for each other. Hugs!
I keep Sarah in her bed until all the paper unwrapping is done by her brothers--the sound of the tearing paper hurts her ears.
Holidays are hard too, with all the noise of the relatives-also too much for Sarah. She spends a lot of time in the bedroom watching her music dvds. She is happy with these solutions. It is hard, for sure.
Wow! I couldn't have stated it better. I feel exactly the same way you do. My little one never made it to any stage; we are still waiting. That would be the absolute most wonderful Christmas gift of all - for her to do something other than sit in her chair all day looking blank...:( However, I cherish each day she is with us and draw so much strength from her. A very special Merry Christmas to you and your family and especially to Caitlyn!
A search OT recommended chewlry brought me to your blog. I read the entry at the top of the page thinking I was being connected to your entry for chewlry, but instead I find my self leaving you with what I hope will be encouragement. My most cherished Christmas morning was when I was five. Sitting beneath the twinkling lights was an unwrapped doll. She didn't need paper or bows to make her special. Just because she was there she was special. Don't give into the world of marketing that brain washes society into thinking you have to wrap, you have to make your gift "presentable". We've been told to care about the paper. Our girls don't care about the paper. And last... it's not about the presents, it's about God's presence. Well I'm off to find chewlry for an unwrapped stocking stuffer :) I hope you find peace with Caitlyn's Christmas and not what society tells you Christmas should be.
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