How Do You Parent a Dying Child?

Emily Rapp offers a heartbreaking 'New York Times' essay
By Evann Gastaldo,  Newser Staff
Posted Oct 17, 2011 1:06 PM CDT
How Do You Parent a Dying Child?
In the New York Times, Emily Rapp (not shown) says she is not a Tiger Mother but a Dragon Mother.   (Shutterstock)

(Newser) – Parenting advice is strictly forward-focused: Is breastfeeding better for development? Which is the best preschool to ensure a bright future? Like so many other mothers-to-be, Emily Rapp considered those and other similar questions before giving birth to her son Ronan. Then she discovered that Ronan, now 18 months, has the rare genetic disorder Tay-Sachs, for which there is no treatment or cure. He will likely die before age three. “How do you parent without a net, without a future, knowing that you will lose your child, bit by torturous bit?” Rapp asks in a wrenching New York Times column.

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“All parents want their children to prosper, to matter,” she writes. By enrolling them in music classes or sports leagues, we hope they set themselves apart and make us proud. Amy Chua’s controversial Tiger Mother idea perfectly illustrates this parenting path. But Rapp is no tiger mother; her son will never get a perfect SAT score or graduate from Harvard. Instead, he “has given us a terrible freedom from expectations, a magical world where there are no goals, no prizes to win, no outcomes to monitor, discuss, compare.” That’s why she, and others like her, “are dragon parents: fierce and loyal and loving as hell,” she writes. “Parenting, I’ve come to understand, is about loving my child today. Now. In fact, for any parent, anywhere, that’s all there is.” Rapp's entire heartbreaking column is a must-read. (Read more Tay-Sachs stories.)

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