Three days after Emily Rapp’s son Ronan was diagnosed with a terminal illness, she started blogging about the experience. He was 9 months old and had Tay-Sachs disease, a fatal, degenerative condition. At first, she posted to tell friends and family. “I felt really raw. The writing gave me a shield. It was a way to feel connected to my people without being on the phone all the time,” she told me in an interview this week. Rapp’s audience grew beyond her immediate circles though. Many visitors came to her site after reading “Notes from a Dragon Mom,” The New York Times op-ed she wrote about parenting a sick child. They joined the community around Emily and Ronan, and stayed until the end. On Feb. 15, Ronan died, and we all grieved.
Now, less than a month after his death, Rapp’s memoir about her experience “The Still Point of the Turning World” has been released. Like her shorter pieces, the book is mind-bogglingly sad, but it is also forceful, inspiring, and filled with lessons for parents. The first chapter (which you can read an excerpt from here) is a raw account of what it was like to find out that Ronan was going to die before the age of 3. It is almost impossible to get through, especially as a mother, without wondering how she was able to access those emotions and write them down.
Rapp is not a fan of most common forms of sympathy. In the book, she writes, “I’d so much rather have an e-mail that says something brutal and terrible and true than a sympathy card that’s made of soft-to-the-touch parchment, the edges gently serrated, decorated with loathsome, uniform birds…” By phone, she added how much she hated many of the phrases she heard from strangers. “Meeting you and learning about Ronan has made me really happy in my life,” was one that made her especially angry. When asked why that bothered her, she said authoritatively, “My life is big and beautiful.”
Yet, as the mother of a toddler myself, I was tentative before calling Rapp to interview her. I wondered — How will she be able to talk about this on the phone? Isn’t she broken from her experience? I’d read her words and knew she didn’t want to hear those sentiments, but I couldn’t imagine a strong woman picking up the phone, someone who sounded like any one of my girlfriends.
I realized my concerns were foolish the moment Rapp said “hello.” She sounds approachable. She speaks quickly and decisively without questioning herself. Her background — a degree in divinity from Harvard, a Fulbright and a lifetime of voracious reading — makes itself known as soon as she gets going. She is a professor, and as she talks about Ronan, it is like getting the chance to sit in on a rousing college class.
I wondered whether talking to her was easier than expected because Ronan is gone. Rapp said she is grieving, but relieved that he is no longer living in his body. “It’s a strange time. I don’t feel like I did when he was diagnosed,” she explained. “I had been sad enough. I was worried that I would feel worse.” Now, she wants to honor Ronan with her book and “his memory imprinted on [her] heart.”
“Learning how to live with death — that final wilderness from which none [of the parents of children with Tay Sachs] returns — was also about learning how to live.” Rapp writes in “The Still Point.” Like yogis and mindfulness meditation teachers, she talks often about the importance of being present, a goal she learned from Ronan as he showed her what a life without anxiety looks like. “He was happy, but he couldn’t say ‘I’m happy’,” Rapp explained.
As a baby, Ronan had a routine like any other: he would get up and have a bottle, solids, a nap … and Rapp took him everywhere. “I wasn’t that concerned about things like bedtime,” she said. His dad Rick, from whom Rapp is now separated and who she said was an incredible father to Ronan, was stricter about schedules and food. But for her part, she gave her baby anything he wanted. For example: cheesecake. He could take down a whole piece, she said.
And music. Tay Sachs is degenerative — babies who suffer from it lose muscle strength, mental skills, eyesight and eventually become deaf. But while Ronan could still hear, Rapp had a harpist come to her house to play. She also invited an a cappella singing group over. They did something called toning with Ronan where the group would make a sound, and he would sing it with them. In the absence of a live performance, Rapp said Ronan liked power ballads, African music and gospel.
In her New York Times op-ed and now in her book, Rapp points out that nobody looks to mothers of sick children for parenting advice. “Dragon moms,” she calls them because, simply put, they are scary. What she learned from Ronan, however — to be still, to be happy — are universal lessons. “Ronan taught me that children do not exist to honor their parents; their parents exist to honor them.” Though her experience is rare, Rapp’s ability to translate what happened into lessons for other moms and dads is her gift to us.
One possible reason for why it was so easy to talk to Rapp is that she is a self-described “woman who is constantly on the phone with other women.” In a piece she wrote for The Rumpus last year, she made a case for the power of female friendships, saying “It is not an exaggeration to say that I would not have survived — that I will not survive — without my women friends.” By phone, she told me she is constantly collecting new ones, and she says one of the gifts Ronan gave her was to deepen her friendships terrifically. “I thought people would flee [when Ronan was diagnosed]. Some people did and those people aren’t my friends any more, but other connections were deepened and strengthened and complex-icized by this. It’s a really deep bond when you can move through as witnesses to each other’s pain.” She called herself a nightmare friend, phoning the people she counted on in the middle of the night and wailing, she said — but it is hard to believe any of the people on the other end wished her calls away.
In fact, several people who learned about Ronan would say things like, “I’m so sad for you and I’m really pissed off at the unfairness of it. This should not be happening.” Those were the sorts of comments Rapp preferred to hear. And, “Is there anything I can do?” She liked that question because she didn’t want to be alone. Rapp wants empathy, not sympathy, she said.
She knows that not everyone grieves in the same way. But she found that people had very particular expectations of what someone in her situation should be doing or feeling. It troubles her, she said. In one of the most powerful parts of her book, a chapter that is more poem than prose, Rapp responds to anyone who has a singular vision of what a grieving parent looks like. She writes:
An empty pillow book
Waiting for someone to change the subject
Ink spilled on white pants or a white sheet: ink from a pen, ink from a squid, blue-black and slimy
Sighing a lot
Feeling naked in private and feeling private in public…
… And the list goes on.
Ronan also gave Rapp fearlessness, she said. People may not like what she has to say, but she plans to be bold. “It’s all just bunk. It doesn’t make any sense. [You have to] speak your truth and I feel like I’m doing that,” she said. Rapp plans to continue writing, just as she has always done. And she will advocate for other parents of babies with Tay Sachs. Thanks to Ronan, Rapp said she will do whatever she wants to do. “He never had any options. He was totally helpless. That makes me want to live a big life because he never got to make any decisions on his own.”
But there is one gift that Rapp received from Ronan that is completely universal. Just like any other mom says about her child — whether he is healthy or sick, successful or struggling, extroverted or shy — she said her baby’s life was the first and greatest thing he gave to her. “He was just a beautiful boy. He was my kid.”