We are still waiting on more information regarding the new information about our daughter, and what that means for the pending surgery date. Living in a constant state of flux, surrounding by looming unknowns is starting to take a toll on us. However, we perceiver. Making plans with the idea that they could all shift with a phone call has been our way of life since Craniosynostosis invited itself into our lives.
I am feeling better. Hovering around 80% and accepting the exhaustion as a temporary state of everyday. I do not feel like I am getting enough sleep, and that I could sleep for 14 hours. Not at ALL how I have been for my entire life. I have reached out for some additional testing based on the advice from MANY of you (thank you all, who know who you are).
I have been able to make it to the office, more than not, over the last two weeks (even if it has pushed me a bit to far a few times). I have also been able to get back to streaming (nightly). The upside is that it is forcing me to do more. The down side is that I am getting ideas of things that I want to try to do, but not having the energy to do them. Perhaps the latter of those two is a bit of a blessing in disguise. I am constantly trying to do as much normal as I can, because that is how I roll. Pushing myself through it all.
The kids are doing… well? Hard to tell. I know for some of you school has started, others have some time. But as for our house, we go year-round with home school, so it is just another week for us.
We are also thinking about re-arranging MOST of our house…. This should be……….. fun.
More when there is more. Thank you for the thoughts, kind words, conversations, and ideas over these last few weeks. It has helped.
Live big, love bigger, and be kind, always.