I wish this was a post about the freight train of awesome barreling through Rettland and all the progress that is happening, but it is not. While that is happening, that is another post. I am weary and worn out as living with Rett syndrome has been relentless lately.

We are having to move because it has gotten too difficult for me to get Claire up and down the 7 stairs that lead to our front door. When Claire is well she walks in with assistance but when she isn’t I have to carry her and I can’t much longer. I am heartbroken to have to move. I am angry that we have to leave the place where we lived the happiest years of our life. I don’t want to look for a home with ramps for my daughters wheel chair.

It’s also allergy season and this is taking a toll on Claire. Her brain hasn’t been well. She’s a shadow of herself and I miss her. Chloe calmly helps in the car as Claire convulses and my heart breaks as our 5-year-old has to deal with this level of care for her sister.

Today was the pinnacle. It was the worst of the brainstorms for Claire and my back completely locked up carrying her. I cried my eyes out in exhaustion as I struggled to keep things together until Jared got home. Just as I regained my composer a seizure came out of nowhere, taking both Jared and I back down before we had a chance to recover from the last hour, day, week, month.

Rett syndrome doesn’t wait for you to rest. The good days and weeks are still hard enough that you can’t get caught up. It is relentless. It takes your friends in the middle of the night. It hits you with grief on the most joyous of days. It knows no limits on what it can take. I am tired today and stepping back to be in that. I doubt I will return rested but as soon as I can see through the tears I am jumping back on that train. This story isn’t over yet.

5 thoughts on “Relentless

  1. I’m telling you: six months in and I don’t miss the old house. It’s a no brainer for the quality of life. But I’m sad for you. And sad that you were in that place. I don’t count the days or hours anymore since I’ve been there. I can’t keep track. I can tell you that yesterday she sat for five minutes with her legs dangling and her hands still at therapy. That my other two are happier at the new house too, the oldest said “yes ma’am” five times in a row to requests and immediately acquiesced to my request (let’s face it: demands) and the middle child and I had a rousing game of yahtzee on this -10 degree day. I’m tallying up the good times and letting the bad things roll by like waves. They ebb and flow, and can’t be fixed usually. My thoughts are with you.

    1. Thank you JBS! I know the new place will be better and the world will keep spinning. Claire’s didn’t stop breathing for 2 days after this post and the tape that my pt put on my back did wonders. It’s a lot easier to get a little perspective when with those two major changes 😉 xx

  2. Zenaida says:

    Relentless is the monster we fight. When we tell ourselves we absolutely cannot take another blow. Hits even harder. I have heard some people say that the stress of having a child with special needs is the equivalent of the stress of being at war. I always wondered if that was true. My sister and I went to see the movie American snipper and she was at the end of her chair, she said she felt really anxious and she couldn’t grasp how he could handle all that stress. As for me I felt I could relate to his stress. I understood where he was coming from and how he felt isolated from everyone with his feelings. Stress and fear are an individual fight. We conquer some days and some days we just feel we are losing ground.

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