How do you parent a dying child?

How would your parenting change if you knew your child only had 3 years to live? That's Emily Rapp's reality. Her son was born with Tay-Sachs, a terminal disorder. She wrote about that question recently in a New York Times opinion piece.

How do you parent without a net, without a future, knowing that you will lose your child, bit by torturous bit?Depressing? Sure. But not without wisdom, not without a profound understanding of the human experience or without hard-won lessons, forged through grief and helplessness and deeply committed love about how to be not just a mother or a father but how to be human.Read the rest

Without a future to shoot for all that matters in the present. I can't imagine the emotions this couple must go through. On the one hand you want your child to get the most out of the human experience because you know he has little time. On the other hand, why rush around when you could just enjoy every available moment?

Ronan won’t prosper or succeed in the way we have come to understand this term in our culture; he will never walk or say “Mama,” and I will never be a tiger mom. The mothers and fathers of terminally ill children are something else entirely. Our goals are simple and terrible: to help our children live with minimal discomfort and maximum dignity. We will not launch our children into a bright and promising future, but see them into early graves. We will prepare to lose them and then, impossibly, to live on after that gutting loss. This requires a new ferocity, a new way of thinking, a new animal. We are dragon parents: fierce and loyal and loving as hell. 

There's a lot to reflect on here. Thoughts?