"She spins and she sways to whatever song plays Without a care in the world And I'm sitting here wearing the weight of the world on my shoulders. "

When your child is dying and the doctor say there is no cure how do you parent? All the parenting guides teach how to potty train and the value of getting them into a good preschool, but they don't tell you how to change a feeding tube or control a seizure. You see my daughter is dying and there is no cure. In the United States it takes 12 years to go from an experimental drug to your medicine cabinet. So I don't need to know to plan a sweet 16 I need to know how to plan a funeral. I am not being a pessimist, I know that's what some of you are thinking. I love my daughter but she suffers more than she shows. It's hard to eat a meal while she watches not being able to eat. All the while trying to keep a semblance of a normal life for my unaffected son. It's hard to see the pain and guilt in my wife's eyes and and be able to fix it.

It's just hard.