Tuesday, February 7, 2017

Day 2

Today has been a better day.  Shelbie was able to sleep well last night and that made all the difference in how we managed the day.

It's interesting to see people stare at her.  It's not really a big deal.  A couple of people stop and ask what is wrong with her.  One guy stopped to ask her what was going on with her head.  He wondered if she had had brain surgery.  He then went on to talk about every member of his family who had some sort of brain problem.  With each little story, I said, "Oh wow!  I'm so sorry."  and with each little story, he replied, "Oh it's okay, they are dead now."  Seriously...he had nothing but dead people in his family from brain problems! She's a brave girl.   It reminded me of when she went back to school after being gone for two years for chemo.  She went back with half a head of hair.  I spent a fortune on a wig for her, wraps, hats and she just went without.

We had a really good talk today about her situation. We don't talk very often about reality.  We seem to just barrel through and keep moving.  Sometimes, I think we honestly believe if we run fast enough, we will escape the sorrow that is always there waiting to be acknowledged.  This situation with her brain is really starting to interfere with her day to day life in ways I didn't understand before today.  It made me sad to talk to her.

She had an event just before dinner.  She had that lofty feeling like her brain was floating around in her head and then she had a really hard time with co-ordination.  We pushed the red button and we will see what they say about it tomorrow...if anything.  Probably too soon to get any results.



Tomorrow, she has to have her transfusion so I will be on my own for that and we will start it here at the hotel.  The pump is pretty mobile and so is she, so we will just haul it up to the hospital when we go.

I've never looked at my kids and seen disease but this week has been hard, I won't lie.  Tomorrow, I imagine is going to be a tough one too.

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