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.
Colleen English 
Colleen, I truly hope it gets easier for you– I really do!– But I have to admit, I’ve been playing “catch up” for about 14 years…. I was ok til Abby was about 3! Since then, I’ve just watched it all get away from me. (But you are much younger and stronger than I was! And hope is so much greater now than it was 14 years ago! You will do better than I did…). Just a little unasked for advice ;0). Be careful with exhaustion. It really takes a toll. I was just always tired til Abs was 12. Then her surgery, a long hospital stay, and a two year bout of anxiety induced screaming just about killed me. I never slept. (Those all happened to her– I just dealt with them!) I haven’t bounced back. Looking back– hindsight is great, isn’t it? I see now that I should have taken a little better care if myself. I needed to go away, get some help, use more meds– something! Because I didn’t bounce back after I fell over the edge of exhaustion, and I’m not as good a mom as I could have been as a result. So take good care of yourself– by doing so, you will actually be taking care of your two little beauties!
And keep the music cranked up!
Thank you Donna! Sounds like you got a lot to deal with over and over, that is part of what makes this life so hard, the constant levels of stress. I did go get a massage last weekend and today the girls are going to respit so Jared and I can go to lunch and come home and pack. I have Chrons disease and that adds a lot to my fatigue so I have to build in support, I am painfully aware that I can’t physically do it on my own. I have such deep respect for those like yourself that were paving the road years before us, when there was less research, less support. Please know that as we travel and soar on the high of participating in research, it is truly because we are standing on the shoulders of giants. I am so grateful for the hard work of the families that came before us and thank you for sharing your wisdom.
Colleen, I used to be a case-manager for families with children under the age of 3 that needed; speech, occupational, physical, developmental therapy…and I watched a lot of families as they tried to process and ‘make it OK’ that their life had become hard, but after awhile of ‘making it OK’ I could see them get tired…
It is ok to be tired, it is ok to not want this to be the way things are, and it is ok not to have to fight ALL THE TIME…
Hugs to you!