The HLHS Battle

The oldest person living with HLHS has died.  She was 38.  Which is pretty amazing really.  When my daughter was born with HLHS 14 years ago she was only given a 13 year life expectancy.  So you can imagine what the 38 year old's expectancy probably was.  When my daughter was born I immediately started raising her differently.  With a "death sentence" on her head, she was raised to live in the now.  Her future was worried about.  Everything was about the present.  But so many people who worried about her dying young have since died and she is still here.  People who were young themselves, children even.  They have died from sudden heart attacks, liver failure, car wrecks, cancer, so many options.  And here she still is.  There is no guarantee for anything.  Enjoy what you got.