When Odd Becomes Normal

I was thinking yesterday how quickly we adjust our lives when new things happen. For us, going to chemo, dealing with a grumpy steroid baby, administering medicine daily, etc. has all become our new normal. I can't even remember an adjustment phase. We just moved right into our new existence, and now it is our normal.

We have just been moving right along with what we have been told to do. Because LCH is so rare, I feel like I am blindly following the doctors at UCSF. There just isn't much information or choices in treatment. I've been feeling like we are in a bubble all alone with out a lot of outside input. Maybe that makes it easier.

The other night I was contacted out of the blue on FaceBook by a dad of an LCH child. I was connected with a network for families in our position. It was exciting and all of a sudden my world felt bigger. I spent a few hours exploring late into the night on blogs and websites, but that is a double edged sword. It allows you to connect with others in your position, hear hopeful stories, get encouragement and ask questions. It also clues you into the sad stories of toddlers passing away, hopelessness and despair.

I am torn between my bubble of ignorance and the bigger world.