Sunday, September 28, 2008

I hate Rett Syndrome--kind of deep, grab a tissue!

Let's face it, each and every one of us parents go through this from time to time. You think it's all going great, and you're dealing with stuff one day at a time...Then, all of the sudden it strikes. Something happens that digs up all of those feelings in you. All of those feelings that make you angry, that make you feel like you have failed your daughter, that make you wonder if you've done everything you can...Does it ever get easier? Sure it does! The "I hate Rett Syndrome" moments become fewer and farther between. It gets easier to pull through, but still they happen. All we can do is lean on each other and remember that we are all in this together. Although Rett Syndrome takes us all on separate journey's, it is still Rett Syndrome. It is still a change in our lives that we never expected.

Just when you think you've got it all under control, something happens and you lose it...That pretty much describes my day. Since Caitlyn is in Kindergarten now, she is bringing home the occasional homework. We had two things we had to do today. The first was decorating a box that would hold all of the books they are making at school, so that she can read them at home. This should have been a simple project, but it tore open old wounds. We have these cool pen adapters (I'll post a picture soon) that Eric made for Caitlyn so that she can't throw the markers. She has one at school, and one at home. So we went to the craft store and bought a cute box and some stickers. We sat down after a short nap to decorate our box...It ended up with her running off laughing and me crying. It was such a simple task...But sometimes it is the simplest of things that remind you of what you thought life would be like. I never in a million years thought the simple project of decorating a box would hurt so bad. I can't explain the pain...It hurts to see her not be able to do simple tasks. My logical thinking knows that it shouldn't hurt. I know she knows know different, and doesn't seem frustrated...but the pain persists. We did finish our box...I decided not to venture into the Jack and Jill assignment, thinking we would do that in the morning. (We have to count the words in each line, marking them on a little graph)

With everyone one of these feelings, questions come up in my mind. Today I find myself wondering...In those moments that the tears escape before I can be alone, what do I tell Caitlyn? How do I explain the pain I feel to her?

With every tough day, comes a good ending. On the hard days, I strive to make the ending enjoyable for both of us. Caitlyn had a very enjoyable bath, which left us both soaked. We then read the book that she brought home from the school library on Friday, by flashlight. She loved it! We curled up in her bed together, she turned the pages and I read the words. She was so excited to turn the pages and see what happened next. It is hard, but we try to find a drop of joy in everyday...

I feel like Caitlyn was just diagnosed with Rett Syndrome yesterday...


Avery said...

see that was a good ending! That is awesome that Caitlyn can turn the pages! You should be so proud of her.
I agree though, it is the most mundane, simple tasks that make me the most sad!
Today is a new day, Keep your head up! XOXOXO

Brooklyn said...

I can feel the pain and struggle in everyone of your words......yes we ALL HATE Rett SYndrome. I think that is one thing ALL of us have in common. Another amazing thing is the amount of love God gave us for our girls and the patience we are given in our tearful moments. I often wonder what I will say when Brooklyn catches me in a teary day.....I am still not sure. Up until now I have escaped that moment. There will always be those days when it seems like yesterday. There will always be boxes to decorate and graphs to chart. We do our best and know that there are other moms like me thinking abot you and praying for you and also praying for a CURE and working hard daily and raising money for that cure. I dream of a day when our girls do not have to deal with Rett Syndrome. I have to believe that day is out there.
I wish I could give you a GREAT BIG HUG....That would be one nice thing - If we all lived closer to be physical support for each other.....but since distnce is sperating us know that I am hear for you to talk, cry, yell, or laugh anytime you need. I am just a phone call away!
PS, Reading with a flashlight sounds fun!!!!

Grammy said...

Rebecca, tell Caitlyn that Brooklyn's Grammy reads in bed with a flashlight nearly every night...we never get too old. Unfortunately, the reason I do is because Pappy goes to bed before I do and is asleep. I HAVE to read a little bit to get to sleep! Keep up the fun!

Brooklyn's Grammy