update

yes I know it has been a while since I have written anything.  I realise how important it is to share our experience of caring for our children in the hopes we can help other parents.  For us it was a scary journey and still today I am learning how much those 9 years of caring for Melissa has impacted on my life today.  I have no regrets but feel I am still learing about life.   There is some great sharing being done by families.