The choice

Ellie and I often discuss how although there are some things we must do, we always have the choice of what we think about.  We can choose thoughts that feel sad or bad or we can choose thoughts that feel good or sometimes just a little bit better. 

Yesterday afternoon, our neurologist, Dr. Hsu (pronounced shoe), stopped by to check on Ellie.   After listening to my monologue on what has been happening over the last few months, he said that after such an aggressive surgery, perhaps recovery would take longer.  And maybe recovery is an up and down process.  This statement totally made sense to me, as I recalled the times when I have had a cold or flu and felt suddenly better in the morning and worse in the evening.  It gave me a way to reframe all that is happening here.  Betsy C. said when she heard that almost the entire tumor had been removed, her immediate thought was how that would take a lot of adjustment for a brain, to go from lots of tumor to hardly any.   Those statements have helped to reframe everything going on right now. 

Speaking of choices, I was explaining to Betsy how when I was pregnant with Ben, I felt so indecisive, the pressure of making "the right" decision weighed heavily upon me.  It was when Ellie was undergoing chemo for the first time, something we had hoped to avoid.  Anyway, now Ben has the same difficulty.  He seems to constantly change his mind back and forth and back and forth.  When I told this story to Betsy, she wondered if maybe Ben had been like that all along and that I had picked up on that when he was in utero.  Again, another way to think about it.  And it certainly puts less blame on me, feels a bit better.

Then this morning, the rehabilitation person (I have no idea how she is different than PT/OT/speech therapy) came in and proclaimed that this, in fact, may be Ellie's new baseline.  I almost had to cover my ears and sing a song to block out the mere thought of that as our lives.  This drooling, slurring, unable to sit up, hardly able to walk the new baseline.  Unacceptable.  And, of course, what I have been secretly fearing.  So what I am working on today is focusing on the idea of being on a journey of recovery right now, rather than trying to figure it all out or deciding this is the best we are going to get right now.