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In January 2011, writer Emily Rapp was a happy new mother when she and her husband found themselves in a pediatric ophthalmologist's office with their 9-month-old son, Ronan. They were worried about Ronan's development and had gone to the eye doctor to rule out vision problems as the culprit. Checking Ronan's retinas, the doctor saw "cherry-red spots on the backs of his retinas," Rapp writes in her new memoir, The Still Point of the Turning World. Ronan's diagnosis that day was Tay-Sachs disease, a genetic and degenerative condition that is always fatal. There is no cure. Ronan would likely die by the age of 3.
Rapp and her husband did not need a second opinion. "I knew it was like the worst thing that could possibly happen," she tells Fresh Air's Terry Gross.
Children with Tay-Sachs lack an enzyme responsible for breaking down specific chemicals in the nerve cells of the brain. When these chemicals aren't removed, they build up, and the child loses his or her ability to function. Seizures and loss of sight and movement are all symptoms of the child's body shutting down.
Ronan died in February, just shy of his third birthday. The book is a meditation on how to grieve for a living child who does not have a future. The book ends while Ronan is still very much alive.
"When I finished [the book] I felt that [the story] was done," Rapp explains, "and what I had wanted to say about him was done. ... [T]he rest of the time was just something I had sort of anticipated but didn't necessarily need to be in the narrative."
Rapp, who was born with a congenital birth defect that led to the amputation of one of her legs, says Ronan's diagnosis really shifted her understanding of luck and what it means to be lucky — or blessed — in life.
"I had this period when I would go out in Santa Fe," she says, " ... and people would say to me in the grocery store, like, 'You must feel cursed,' and I would just be like a) 'That's not helpful,' and b) 'So are you if you think about the fact that you're a human being and you never know when chaos will find you.' So it made me just realize how deeply phobic we are of this idea that chaos is really a reality in this world. It is the thing that can touch and will touch us sometime in our life, and that doesn't mean that we're bad people or we deserve bad luck or that we're even unlucky. It just means that that's what happened."
On how religion factored into her response to Ronan's diagnosis
"I was definitely not identifying as a Christian long before Ronan was born. I think having that kind of a diagnosis, which really feels straight out of the biblical Job — I mean, it really does — it's like you feel cursed, and what Job does in the Bible is wander around asking everyone why this is happening because he doesn't understand, and I think that's a little bit how I felt. People come around Job and they sit with him for a while and then they try to explain it, and that's when it all kind of goes horribly wrong, because what they should just do is sit and witness and say, 'We don't know. We don't understand. It doesn't make any sense. This is chaotic and crazy and I can't believe it's happened.'
"So I think I didn't want to pray, but I definitely felt that impulse that many religious people feel: that I should, you know. I had that whole I-want-to-broker-a-deal. I went to shamans in Santa Fe. I tried to find anyone who could give me some kind of answer, not to save [Ronan] but just tell me why this was happening or if he would be OK or what would happen to him when he died, which is something I was thinking about constantly and still do."
One of the things about having a terminally ill child is that you start to understand and really absorb your own mortality and the mortality of every single person that you love, and that is really terrifying, but it's the truth.
On looking at people's death photographs at the Upaya Zen Center, where she spent a weekend during Ronan's decline
"Some of them showed signs of struggle. There were babies; there were older people; there were spouses; there were pictures of the whole family in the bed with the person who had just died, covered in flowers. And that was so difficult to see because just the idea of Ronan not being alive was so hard, to even conceptualize it was just so horrible, that I didn't want to imagine it. But going to that weekend was so helpful to me because it made me imagine it, which made the grief worse for a while and then it kind of lifted. One of the things about having a terminally ill child is that you start to understand and really absorb your own mortality and the mortality of every single person that you love, and that is really terrifying, but it's the truth."
On writing and finishing the book before her son died
"When I was writing the book I very much wanted Ronan to be fully alive in the book, and I wanted people to experience him when he was his most sort of active, able self, and I really wanted it to — which is sort of ironic, given that I don't believe in heaven or really an afterlife as I've been taught to understand it — I wanted it to end with an afterlife-ish sequence. I thought about [it] a lot in the months when he was deteriorating at a more rapid rate, and I would try to imagine him sort of playing on the shore of a lake with grandparents I've never met and other Tay-Sachs babies that I've met and who have since died."
On how writing about the experience turned into a book
"I never actually wrote this intending it to be a book. I wrote it as a series of blog posts in most of 2011 — at least January to the end of the summer — in a sort of fugue of grief and hysteria, essentially. I did it because it gave me something to do and I desperately needed that, and I just felt like ... my only lifeline to some kind of hope was putting words on paper, trying to make meaning from chaos and then putting it out in the world. Initially the readers were my friends — my girlfriends, basically. [They] were like, 'Make sure we know what's happening with you. Post things on the blog so we know what's happening with Ronan,' because I didn't want to talk on the phone all the time.
"So the audience was sort of intended at the beginning just to be people who knew me and wanted to know what was happening, and then later I had a good friend — my friend the writer Lisa Glatt — said, 'You know, I think this is a book and I think you should think about it as a book,' and I just thought, 'That's totally not on my radar,' but then, you know, I set it down for a bit, some of the blogs, and I thought, 'Well, maybe, maybe it is,' and I think it was really the only thing that gave me peace in that first year of Ronan's diagnosis. [The] thing I wanted to do every day was to write. I was compelled to do it in a way I never was before."
On grieving her son's death
"This is such a hard thing to explain to someone who hasn't been through it, but when Ronan got his terminal diagnosis, that was the day for me that he died. That was the day of his death for me was Jan. 10, 2011. Not to say that I didn't enjoy being with him through his life, but I felt — I think — the full weight of that loss on the day that he was diagnosed, and when he did die I was relieved that he was released from his suffering, and so that grief is different than it was. It's just, it's qualitatively different, and not that it's not still devastating. It was devastating to watch somebody deteriorating, too, and to know that you couldn't stop it and to worry that there would be more suffering and wanting so deeply to spare him that. ... For me that first year was really the worst, because watching him change and all the hopes kind of dashed and sprinting to the end at the beginning was how I grieved."