Posts Tagged ‘ Tay-Sachs ’

Tragic and Beautiful: Emily Rapp’s ‘The Still Point of the Turning World

Thursday, April 4th, 2013

Amazing, poignant, tragic and beautiful. That’s how I’d describe Emily Rapp‘s bestselling memoir, The Still Point of the Turning World. You’ve probably heard of Emily by now. She’s written amazing pieces about her son Ronan for The New York Times and many other publications. When he was nine months old, she and her husband found out he had Tay-Sachs–an always fatal disease that creeps in as the child slowly fades away.

I honestly didn’t think I could read a book like this one. My worst nightmare–like most moms–would be losing one of my children. But Emily’s writing and insight had me gently facing my fears as I learned how her family coped with grief. They did it with sadness, anger, presence of mind and grace. Emily took something ugly and violent and truly made it change the way I think about my life. Her sweet little boy died recently, and on the day I found out, I cried.

Read The Still Point of the Turning World. The words are pure poetry, and the mother’s struggle an inspiration. I think of Emily often, and I wonder how she’s doing now. And I hope she’ll use her wisdom and talents to write another gorgeous book soon.

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Sending Love to Emily Rapp Author of ‘The Still Point of the Turning World;’ Her Sweet Son Ronan Passed Away Today

Friday, February 15th, 2013

A dear, smart and inspiring author, Emily Rapp, lost her son Ronan today after a long struggle with Tay-Sachs disease. Emily’s forthcoming memoir, The Still Point of the Turning Worldis one of my very top picks for 2013. I will read it soon with tears in my eyes. Here is a little more about Emily’s story directly from her press materials:

“Ronan was not expected to live beyond the age of three; he would be permanently stalled at a developmental level of six months. Rapp and her husband were forced to re-evaluate everything they thought they knew about parenting. They would have to learn to live with their child in the moment; to find happiness in the midst of sorrow; to parent without a future. The Still Point of the Turning World is the story of a mother’s journey through grief and beyond it.”

Peace be with you, Emily. Peace be with your family. Peace be with Ronan up above.
In lieu of gifts, the family requests that donations be made in Ronan’s name to National Tay-Sachs and Allied Diseases.
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