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.