68 of 84 people found the following review helpful
"Parents with dying kids have insights into parenting and they are hard won.",
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This review is from: The Still Point of the Turning World (Kindle Edition)
This then is a book insights "forged through the prism of hellish grief and helplessness and deeply committed love." Emily Rapper is a dragon mother, a creature of myth and legend. When afraid, the world was described as having dragons. Her son Ronan diagnosed with Tay Sachs, a disease of the lack of an enzyme. The brains of babies with Tay Sachs begin to regress in the womb and continue until the child dies, usually at three or younger. Ronan will lose muscle tone, sight, hearing; dying slowly with no hope of remission. Emily Rapp joins the ranks of dragon parents.
Dragon parents are scary for they, we, are given the bowl of grief we all hope to escape. People may turn away. It may be catching. Didn't she have prenatal screening? (She did, the mutation was rare and she is not Jewish, the traditional carriers.). Everyday parenting is a drive to optimize, to keep safe, to provide. But what we do not wish to know is chaos finds everyone. This is unwelcome news that dragon parents tell us. How to care for the dying child, enhance his life, and ensure his dignity are lessons they learn.
How then to live with grace the days that are allotted. In large part this book is for Rapp the prescription for throwing bottles of contact to shore. She uses writing to to help her to center, to live now, to make sense of the tragedy. In doing so she brings the reader the news at the end of the world and urges each person to embrace the time we have and understand the place death and grief holds in every life. Her writing is lovely. The book is replete with searing quotes from around the world of poets and philosophers. It celebrates the lives of all our ill and hurting children.
Sitting on the couch writing or reading and loving in the now brings us the grace we seek. This is a wonderful book.
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Showing 1-2 of 2 posts in this discussion
Initial post: Mar 28, 2013 9:59:48 PM PDT
claudia brooks says:
Thank you for bringing that grace of understanding and appreciation for this book in you review.
In reply to an earlier post on Mar 29, 2013 3:46:18 PM PDT
Amelia Gremelspacher says:
Thank you very much. That means a lot.
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