Family Matters

Q&A: Author Emily Rapp Writes About Loving a Dying Baby

It may be the ultimate test of a parent's devotion

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Emily Rapp with her son, Ronan

Courtesy of Emily Rapp

I had a hard time picking up Emily Rapp’s new book, The Still Point of the Turning World. It collected dust by my bedside for some weeks before I was able to power past the first few pages. Not because Rapp isn’t a gorgeous writer — she is — but because I knew the ending of the story. And it wasn’t happily ever after.

Rapp is the parent whom most moms and dads hope they never become. In a world where pictures of kids playing in soccer tournaments, competing in science fairs, smiling, laughing, losing teeth, looking adorable and just generally growing up, abound on Facebook, Rapp has only somber reality to offer. Her son Ronan died of Tay-Sachs disease in February at age 3, three weeks before Still Point was released. “The death of a baby seems to go against nature,” she observes. Not every child will continue to get bigger and taller and blow out candles on a birthday cake, welcoming each new year. Hers didn’t.

Rapp, 38, doesn’t sugarcoat learning of Ronan’s diagnosis — Tay-Sachs disease brings blindness and seizures and paralysis before it kills children, typically before their third birthday. Rapp was tested prenatally, but Ronan’s form of the disease was so rare that it was not detected. She recounts the horror of learning that her son had cherry-red spots on the back of his retinas, a telltale sign of the disease. She shares with heart-breaking candor that she wet her pants. In the “blackness” she describes, I imagine I would do the same.

Rapp, a creative-writing professor, is both brave and unapologetically fearful about what’s to come. Most of all, she is honest.

After gathering the courage to finish the book, I talked to her about what platitudes you shouldn’t say to a parent whose child is dying, and the big, bold lessons that Ronan taught her.

(MORE: How Do You Parent When There’s No Tomorrow?)

People are undoubtedly uncomfortable around the topic of dying children and many have no clue what to say. One expression, “I can’t imagine what you’re going through,” drives you particularly crazy. Why?

I found it offensive. And I find it wrongheaded. It’s illogical. You wouldn’t think, “Oh my God, I can’t imagine losing a baby.” Because in saying that, you’ve just imagined losing a baby. We’re so used to pretending we won’t have anything bad happen to us if we’re smart enough and rich enough and cute enough. It’s very American to think that. But it’s deeply disingenuous. For people who are grieving, it makes you think, “No one can imagine my sadness. I’m out here in the sadness hinterlands.” But everyone will have something horrific happen to them.

What should people say instead?

“That sucks. What can I do?” Or, “It’s so unfair. What can I do?” I liked it when people spoke the truth about the situation.

What can people do to help?

If you’re a stranger, I found it comforting when I heard people say, “I’m thinking about you and wishing you happiness.” But when people say, “God has a plan for your child,” it feels so false. Suddenly everyone seems to know what God is doing.

Or people would say, “I wish you had more kids,” as if having another child would replace him.

Why do you think people are so uncomfortable with this?

We don’t make our grief public. A lot of people would say, “Why are you writing, why aren’t you just being with Ronan?” People expect you to not take your stuff into the world. We are uncomfortable with grief in this country and we want people to push it away.

Did you feel that you made people uncomfortable?

I did and I still do. Probably because I have an artificial leg and have been making people uncomfortable all my life, I feel like I was built for this battle [Rapp’s left foot was amputated due to a congenital birth defect when she was 4]. Some people are definitely uncomfortable that I’ve made this battle so communal. For me it was not only a way of surviving but a way of honoring Ronan. My concern is to push his story out into the world and to continue to say what he taught me.

What did he teach you?

That no one has the truth about life, about what it means to lead a good life or not a good life. There’s no ladder of suffering, no ladder of happiness. It doesn’t mean I’m some enlightened being — I’m a mess. But he taught me that chaos is everywhere and all you have to do is slip a little and you will slide right in. It’s a cliché that life is short. But what are you going to do with it? What will make you happy?

When you finished writing the book, did you think Ronan would be alive when it was published?

I thought he wouldn’t be alive as long as he was. I was thinking 2½ and he lived until he was almost 3. Most moms I’d been in touch with had kids who died at 2½. I fully expected when the book came out that he’d no longer be alive.

There are so many ways to parent, and so many of those ways have catchy names. You call yourself a dragon mom. What is that?

There was tiger mom and panda dad, and I thought that the dragon was perfect because it’s medieval and weird and sort of magical. Dragon moms are this amazing group of women and no one tries to one-up the other one. It’s all about, How can we care for our kids and how can we help each other? These are not women I would ever have come into contact with. I have zippo in common with them in terms of what I do on an everyday basis. But I just love these women. I love that every year there is a huge public mourning of the children who died. There was only one woman I was in touch with who had a living child. Most of my Tay-Sachs mom friends lost a child 10 or 15 years ago.

What is that public mourning like?

We get pictures of the kids and have a service where we bring things that were favorite toys or books and arrange them in a room. We read their names aloud and people get up and light a candle. People are wailing and crying in really, really public grief. It’s really, really hard, and I find it amazing. We need those moments. We need to have that big catharsis, and then everyone goes to eat pizza and tell dirty jokes. There’s a lot of dark humor and deep, personal grief at the convention. My parents are coming this year. Anyone who has had a Tay-Sachs child in their life is welcome to come.

What was Ronan’s life like? Agony? Ecstasy? Somewhere in between?

It was agony and ecstasy and the extremes of those experiences. It is agonizing to watch your kids suffer and lose them. The ecstasy comes from he was still my kid and I loved him. When he died, I was glad he wasn’t suffering anymore. I was relieved, which was agonizing because he wasn’t here anymore but a little bit of ecstasy because he was free.

I think what I experienced is that life is hard and wonderful, terrible and delicious. You kind of can’t have one without the other. If you love someone, you immediately leap to, What if something happens to them? You have to hold that duality at once.

In an earlier essay, you said that had you known that Ronan had this disease, you would have had an abortion. Now that the circle of his life is complete, do you still believe that?

Yes. It’s not fair to knowingly bring a child into this world who did not have a chance. He was a beautiful sweet boy. But having Tay-Sachs is like being born with a death sentence.

I would give up all of this stuff if I could have my kid back.

Motherhood is such a strong identity. You say toward the end of the book that you have no doubt that Ronan’s face will be the last thing you envision before your own death. Do you still identify as a mother now that he’s gone?

Once a mother, always a mother. I think that’s true in an emotional sense. But in a practical sense, it’s not. I no longer have anyone to mother. I am not doing the practical mothering, which is the harder stuff. I miss that. It’s a loss. It will be interesting to see what happens in terms of feeling connected to other moms.

What’s your thinking on having more children?

A lot of women do cope by having other children. I was talking to a friend, a Tay-Sachs mom. She had an older child when [her child with Tay-Sachs] was born. She said, “I had a project and it kept me alive.” But I had my book and writing gave me hope. It made me feel alive and better able to mother Ronan and saved me in every significant way.

I definitely wanted to be a parent, and I feel sad I was not able to have the kind of parenting experience I anticipated. I would like to have another baby, but I would not go to Herculean lengths at the moment to do it. I see newborn babies and it’s like someone is stabbing me in the heart. I would love another shot.

If someone gives you death, you kick back and say, No, I’m going to make life. It’s a human thing.

MORE: Do All Women Need Genetic Testing Before Pregnancy?

3 comments
PaolaRios
PaolaRios

I'm a grieving parent , and in 2 years

Of my lost I have never had the chance to identify my self so well with another grieving parent ;thank you and God Bless you!

EddieLalor
EddieLalor

A great article  by  Bonnie Rochman. Emily Rapp is indeed a most  remarkable person.Thanks to her for writing this book and for replying to the painfully searching questions of Rochman in such a truthful and touching way. It is so enlightening to us all. Many thanks to TIME for bringing all this to us. Thanks