I have officially reached delusional levels of exhaustion. This is no longer the type of adventure where you take a wrong turn and it gets a little sketchy, it’s morphed into an assault and we are going prepared with duct tape.
Both Captain Awesome and I have been very tired for a while. On top of that I have been disheartened about this upcoming trip. I don’t know what exactly happened but the switch flipped. The crazy fallout from Rett Syndrome in our life has pushed too hard and I am pushing back. We leave in three days, the fridge is empty and Claire’s wheelchair isn’t as functional as it needs to be for travel. It would be easy to curl up in a ball and cry for hours and I am sure that is in my future, but not now.
Right now I am cranking up the Beastie Boys and running through Rettland with ruthless abandon. I don’t have the energy to do what needs to be done but I have the resolve at this moment that life with Rett Syndrome has to change. We can’t wait for a more convient solution. Sure I would have prefered to rest up before the trip, organize a packing list and fill the freezer for when we get home but that wasn’t an option.
On some very crazy level, it feels good to have completely lost it. This is a big deal. We are participating in a CLINICAL TRIAL FOR RETT STYNDROME. I think doing that calm and organized would be a little crazier.