Salvaging the night

Whew!  Finally got home.  There were only a few tears tonight as Sam reached the threshold of his patience with all this.  The boys were frustrated that we have to wait for Boise.  Oh well.  I could tell when we got home that I wouldn't just have the luxury of going to bed.  I had left the laundry undone for the day, the dishes didn't get filled into the dishwasher and a host of other things needed to be done.  Aside from this, the kids needed something to decompress them from this very difficult day. 
     I mustered up all the energy I could find, and excitement and played a game with the kids.  It ended up turning the day around so I'm glad I went to the effort.  It would have been so much easier to go to my room, shut the door and tune out the world.  I even spent 45 min. playing the piano for them in hopes it would calm them all down.  Didn't work 100% so tomorrow, I am giving the boys a 'mental health day' from school.  I know, they shouldn't miss another day but there comes a time when the smallest thing becomes the thing to break the camels back.  School is the back breaker these days. 
     I decided that I can either sit around griping about the lack of communication we have with our doctors or be proactive and be the squeaky wheel.  Tomorrow, as much as I hate to do it, I will become the squeaky wheel.  I will start with Seattle.  I refuse to go another week in the 'mito' dark!  That has just become ridiculous.  Then I will make an appointment to see our Oncologist without the kids being there so we can have a heart to heart about what I need as a mom and a caregiver.  I know that we have a really good Oncologist, the communication just sucks so I think it will end up being a positive thing. 
    So, in the end, though it was a hard day, it's over.  Tomorrow's another day, another hope of something good happening, or not.  The laundry will sit another day, maybe tomorrow it will get done in between cleaning houses for other people.   Maybe the best thing that will happen tomorrow is that we survive it but I guess that's okay too and if Shelbie gets meningitis, I will be glad for morphine and zofran!


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