I think most of the problem is that she has Rett Syndrome

I sit here on yet another beautiful sunny Saturday, windows open and a gentle breeze that fills the house with the sweet smell of the forest. So why is it that we aren’t out having a ton of fun and enjoying all that is available to us? After Jared got home from his ride earlier this afternoon I had a meltdown. Neither of the girls had fallen asleep and they were both very tired. Claire had gotten so upset that she wet her pants that I had to put her arm splits on to keep her from biting herself, needless to say, I was at a low. I was ready to move our bed into the living room so that we could divide the girls into separate rooms. We live in the Santa Cruz area, people have done things more strange. Jared talked me down from moving the furniture immediately and let me cry myself to sleep, a real luxury as I typically just have to pull it together and march on. Twenty minutes later I woke to nothing but the sounds of a giggling Chloe, Claire had finally given in. Jared being the super dad that he is was just starting Chloe’s dinner so I was able to take my time rejoining the world. As I got myself together I thought of how it was when Claire was little. My mind wandered to her time as a baby and the fun we had. She would get all dressed up to go out for a walk. She loved to laugh and play and be silly, granted she does now to, but it is different, it is exhausting. I started talking to Jared about how hard the weekends are and that is when I had my epiphany “she has Rett Syndrome”, duh! I’ve been a little down and hard on myself that we have such a rigid and monotonous life. Then I remembered why, if we stray from our structure and routine it is exhausting because of all the extra stuff that Claire has from Rett. I am just amazed at what a relief this revelation was. I’ve heard the saying ‘it’s hard to see the forest from the trees’ seriously! I have been to close to Claire, trying to make it all work that I forgot why it is so hard, because her body is really fighting against us. I love her sweet smile and all that she brings to my life, I’m just tired. So we got take out tonight. Claire loves the Smart car so she went with me. On the way home her hands were really going so I rested my arm across her lap to slow them down. She then, for the first time in 3 years squeezed my finger and looked at me with the sweetest smile. I feel like it was her little way of reminding me that she is fighting the Rett Syndrome too, that we are a team working together against it.

One thought on “I think most of the problem is that she has Rett Syndrome

  1. Colleen, I understand completely everything you just said because I've had a day like that too (actually many days like that). Thank God for wonderful husbands and dads that will allow us to have that time we so desperatly need to rest. I dream of the day that we can all just hop in the car as a family and do something fun, but you're right, right now its totally exhausting to try to do anything even as simple as taking a walk. I pray our cure comes soon so our daughters can feel that freedom and we can finally rest. Huge hugs from me and Annie!!

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