If you have a sick or disabled child, this site is for you. The exact diagnosis doesn't matter because the problems, worries and fears covered here are those common to all parents in your situation. .
This site is about feelings and how to cope with them. It is about the help available and how to get the best from it. It is about the great taboos that no one talks about like death and failing to cope. The ideas in here are parent size ones you can try yourself. They are based on people's practical experiences, not vague theory. But they are only suggestions, not rules. Don't feel you must follow them all slavishly - use them as starting points for your own solutions.
This site contains the information I searched for in vain when I was told my own two boys were incurably ill with cystic fibrosis. I was frightened of my own emotions, and I needed to know that it was all right to feel so bad. I wanted information written for parents rather than about them, information which didn't just list the problems I was having but also suggested ways I could improve matters. In the end, I gave up looking and decided to write it myself. The resulting book is now out of print so I've put the text on this site instead.
Sadly the English language lacks one word to stand instead of "he or she", so, for simplicity, I've used "he" for your child and "she" for the professionals.