We cannot imagine anything harder than parenting a terminally ill child. Writer and mother Emily Rapp's recent essay, published in The New York Times, is a rare peek into that world. Rapp's toddler son, Ronan, was born with Tay-Sachs disease, a rare genetic disorder that has no cure.
She writes, "This was my day with my son: cuddling, feedings, naps. He can watch television if he wants to; he can have pudding and cheesecake for every meal....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."
Her words will make you cry and make you feel grateful for your children's health. They also powerfully recast a challenge that all of us share: raising a child with fierce love, only to one day let him go. "This is a love story, and like all great love stories, it is a story of loss. Parenting, I’ve come to understand, is about loving my child today. Now. In fact, for any parent, anywhere, that’s all there is."
Do you know anyone who has had to bury a child?