My Family

My Family
3 kids with CF

Saturday, July 28, 2012

Hurry up and wait...

Michael continues to do well.  He has been running intermittent fevers lately but they seem to go away on their own.  I am finding this the hardest time for me.  After his prognosis, there was always something to get done, something to get through and now all I have to do is think and think and then think some more.  After the doctors told us two years was what he has left, we went to Pittsburgh for the transplant evaluation and I was busy planning that, then he was in and out of the hospital, then we went back to Pittsburgh for a follow up, then he was in the hospital again.  I didn't have time to sit and process this all.  It has hit me like a ton of bricks lately and I am finding myself unable to sleep some nights because my mind won't shut off.  There are so many scenarios and I try to picture them all so I feel somewhat prepared but the many variables make it hard.  Sometimes I feel paralyzed with fear because I don't know what is going to happen with Michael.  It's like being told you are going on a trip.  You pack your bags, head to the airport, and are told your flight has been delayed AND rerouted.  So now you have no idea where you are going, when you are leaving,  and what time you will get there.  The only thing you know for sure is that you are going on a trip.  You have no idea what the journey will be like.  You have no idea what your destination will be like.  You don't know if you will be happy in the place you end up.  Will this trip be the best decision you ever made or the biggest regret? 

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