Ronan has Tay-Sachs disease.
How do you parent a child will not have a future?
Emily's brave testimony offers insight that should pull at the heart of every parent. Live each day to the fullest. Moment by moment. Treasure each moment. As she states in the article, "Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself, though this runs counter to traditional wisdom and advice."
She also states another key principle: "Parenting, I’ve come to understand, is about loving my child today. Now. In fact, for any parent, anywhere, that’s all there is."
Ronan may never become an adult. His story will live on with his parents and the lives touched by their story. Her words will help other parents that find themselves in the same devastating position. "What I can do is protect my son from as much pain as possible, and then finally do the hardest thing of all, a thing most parents will thankfully never have to do: I will love him to the end of his life, and then I will let him go."
Photo credit: Alexandra Huddleston for The New York Times
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