Living with a death sentence

Emily Rapp, a professor of creative writing at Santa Fe University, writes about how a parent deals with the knowledge that their child is dying of an incurable disease. She speaks of the need to parent in the moment, as heart-wrenching as that can be:

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. 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.

image: Alexandra Huddleston for NYT

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Filed under Chronic illness, Love, Uncategorized

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