The Still Point of the Turning World

In the middle of my exome madness, in my daily blanket coverage of the internet and all things related to DNA/exome/Baylor/genetics, I stumbled across the book “The Still Point of the Turning World” by Emily Rapp.
Rapp’s 6-month-old son, Ronan, was diagnosed with Tay-Sachs, a fatal autosomal recessive disorder with no treatment and no cure. He died just before his third birthday.
The book is astounding. It reaches deep into my chest and puts words to my grief. I always feel a bit crazy in my thoughts - like I wonder why people are so afraid of me now. No one wants to talk to me, in case I should burst into tears or want to talk about something unpleasant, like grief or dead babies. Nobody wants to be the person who makes the Dead Baby Girl cry.
Rapp explains it. She writes about the Earth-shattering moment after diagnosis and the total devastation it leans on a life, on a marriage. She writes about those days of uncertainty - the what in the world are we going to do? times. She writes about the things no one can relate to until they experience it for themselves. We mothers of the dead all have the same, different story, but no one can stretch their imaginations around the horror of it all until they live it and NO ONE wants to live this.

A quotable quote from the book:

"Grief, we understood, would now hijack a part of our day for the rest of our lives, sneaking in, making the world momentarily stop, every day, forever."

One of the most interesting things about Rapp’s story is that she was prenatally tested for Tay-Sachs. Her husband is Jewish, so he was high risk for carrying one of the common mutations. Rapp decided to be tested and she was told that she was not at risk to pass on the disease (recessive = two parent carriers).
BUT (always that genetic BUT) it turns out she carries a rare, Moroccan mutation for Tay-Sachs, a mutation so rare that it didn’t show up on the prenatal screen.
The book shows a lot of Rapp’s background in academic literature. She goes on and on (and on) about her favorite classic books and how they related to how she was feeling. But that dialogue got in the way of her story, dragging it down to the point where I found myself skipping these parts in anticipation of more information about Ronan.
Rapp does discuss Ronan — his decline, the way every moment with him was heartbreaking and precious at the same time, the way it forces parents to live their lives backwards, grieving before a death while they wait for death.
But there are some missing parts that I, as a reader, found a little maddening.
A part of me wanted this book to be a roadmap of grief — a tourist’s guide to how to live when you want to die. I wanted to read about her relationship with her husband — did they disagree on treatment? Did they grieve differently? I wanted to read about how people treated her — was she the Dead Baby Girl at parties? Did she lose friends who think Tay Sachs or dead babies are contagious? Were there any insurance issues, how did they pay for everything? I understand how this experience changed her, but how did it change the world around her to a new experience? Will they try for another baby? Will they do it naturally?
The book, finished before Ronan’s death, also stubbornly omits the details of his death. In an interview with NPR, Rapp said she left that out to maintain some privacy in her situation, which I think I can understand, but who really writes a book about a dying child and they doesn’t discuss how she felt, how she coped, when he actually died?
Rapp also mentioned in the NPR interview that she would have chosen to terminate her pregnancy if a diagnosis had been made prenatally. But she doesn’t address this revelation in the book.
But maybe that is just me, looking for validation.

The book “The Still Point of the Turning World” by Emily Rapp is available at Amazon.com.