Tay-Sachs

Published January 15, 2021 by Nan Mykel

(I tried to post this on the LIFE Issues Page–no luck)

DRAGON PARENTS — Author Emily Rapp came up with this term after her baby was diagnosed with Tay-Sachs disease. She knew then and there that Ronan would never walk or talk and he would likely die before the age of 4.

“My firstborn son was born with a condition that prevents the intestine from absorbing nutrients or water for the body. It affects only 1 in 5 million babies, and it’s so rare that one doctor felt confident telling us that we would be screwed if that’s what our baby had. He was also the one who had to break the news to us later.

“Dragon parents have a lot to say about parenting, even if they know their children will die young or even if we have no idea whether our babies will live.

“Rapp wrote:

“We will not launch our children into a bright and promising future, but see them into early graves … 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 … Parenting, I’ve come to understand, is about loving my child today. Now. In fact, for any parent anywhere, that’s all there is.

“I had thought that my expertise in child development would help prepare me for becoming a parent. Instead, becoming a parent helped me see the science in a whole new light.

… Appreciate how powerful your moments with them can be because of what they mean for you and your child right now — not because of what they mean for your child long-term, which you cannot know.

From: https://ideas.ted.com/why-parents-should-stop-blaming-themselves-for-how-their-kids-turn-out/amp/

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