Tuesday, January 29, 2013

dealing with it

It's been a very emotional week for the heart community, high "highs" and deeply painful lows.  We victory together, and we feel the loss together...

  Something I made for Cecilia's scrapbook this week

Karl keeps reminding me I need to set up a trip to Boston to visit the hospital and meet the doctors since this is where we want her Fontan to take place.   I just can't help living in the moment and letting myself enjoy our lives.  Maybe I dont want a reminder that our daughter needs more surgery and that she is not "fixed".  Maybe just for one day...but if I was given a day, I would probably ask for a week, and a month and altogether I would finally ask for an alternate reality.  This is our life and the only option is to deal with it.