Parenting a child with no future

[BlueGin]

Apparently this woman wrote a book about her journey with a terminally ill son. May be a good read. I liked her insight in this quote...it rings true to me.

Parenting.com: What did you learn about the nature of grief and illness through Ronan?

Rapp: What I learned the most from this experience is that nobody knows anything about anything. There's no norm, there's no right life, there's no right way, there's no right person. All that stuff is completely silly. And it's meant to rank each other on this ladder: if you had a life someone wishes they had, you're a success. Which is stupid. If you're the person doing the envying, you're disregarding the things in your own life.

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(Parenting.com) -- What does being a mother mean when your baby is dying? How do you parent a child with no future? These questions needle the reader throughout Emily Rapp's moving and beautiful new book, "The Still Point of the Turning World."

In January of 2011, when her son Ronan was just nine months old, Rapp learned he was dying from Tay-Sachs, a ruthless and heartbreaking disease with no cure. Ronan was given no more than three years to live. He had developed normally for six months until he simply stopped.

He would very gradually unravel, fading away from her piece by piece, until his death in February of this year.

Rapp, a powerfully elegant writer, turned to writing to grieve and for therapy. She processed her pain and fear on her blog, Little Seal. And now, Ronan lives on in this touching book -- as agonizing to read as it is imbued with hope and light.

Rapp recently spoke with Parenting's Brian Braiker about Ronan, what it was like to shepherd and protect him, and what she hopes parents of healthy children can take away from her book.

Parenting a child with no future - CNN.com