Q&A: Emily Rapp on Parenting Without a Future
In a powerfully moving new book, Rapp writes about being the mother of a child dying from Tay-Sachs disease
This book is also about the myths and the stories we construct for ourselves. How do you provide a narrative for a dying baby, for someone who will never be able to understand his own story?
A lot of the book is me projecting on him. He was just his own guy. Yes, his life was completely tragic on a biological level. His body did not work in the world. But people were really moved by being with him -- not because it was a sad story, but because he was so present and calm. He never worried, because he didn’t know how. He’s sort of beyond story and we’re left to create a story. But that itself is a story. It’s a very weird experience being around a human person who has no ego. It’s stunningly different than being around your average toddler. I’d think about it in yoga class, when they say “put it all out of your mind.” I’d think “that’s Ronan. He’s just chillin’.” We try so hard to drop into those moments and it’s interesting when we meet a being that does it by his nature.
There is of course a lot of intense sadness and grief in this book, but there are also moments of great joy.
He would do funny things. He would giggle and have little sighs. He had a personality. Sometimes he would do something that would make me laugh. He was gorgeous and sweet. You could snuggle with him and take him places. All of that was happy. Behind that was this thunderous knowledge and fear of what was going to happen next. You can’t bear the second without the first. That’s why those moments of elation happen. It’s what human beings have to do. At Tay-Sachs conferences, it’s the darkest humor you’ve ever heard. Some people would probably find it offensive. But you have to laugh sometimes, to offload the gargantuan stress that is involved in taking care of a baby who’s dying. It sucks.
This book is all about living that knowledge that the end is coming. Now that you’re on the other side, is there something you would tell the you who was living in that?
I would tell the me who was living that that when he died I would be relieved. And I was. I don’t know if there’s any right way to grieve. But when Ronan was diagnosed, it was like he died on that day. It was like he got hit by a truck. I went through what I think any parent who loses their child suddenly goes through. I was out of my mind. But when he died, he was ready to die. Anyone who has witnessed a death or knows someone who died knows that in that final moment the body is unraveling. It will do its thing and you just have to witness it. It’s really wrenching but he was really, really sick when he died, and I wanted him to go because I didn’t want him to suffer any more. I miss him, but there was nothing for him here.
You finished writing the book before he died, but it was written in past tense. Was that a deliberate choice?
The blog was written in present tense. I did that because I was writing things as they unfolded. But it felt really breathless to have that in the narrative in present in terms of the craft of the writing. Also I didn’t want his death scene to be in the book. If it stayed in present tense it felt like it had to end that way, whereas this is more looking back.
Is there anything you wish parents of healthy children would take away from this book?
I wish parents of healthy children wouldn’t be smug about it. There’s something about smug parents that really hacks me off.
I hear this a lot from parents, and it’s like how is this in any way helpful? “Looking at your life makes me feel blessed.” Which is another way of saying “I’m glad I’m not you.”
What a horrible thing to say.
It’s disgusting. And what I want to say but don’t say is “you don’t know what’s going to happen.” I don’t wish anyone ill. But you don’t know what’s going to happen to your children, so you better enjoy them now. They could drown in a pool or get leukemia or shoot themselves in the head when they’re 30. People don’t want to hear that. But don’t look at me and put that sympathy on me, because you don’t know when chaos will hit you. And it will. I have a great life. It’s a sad, complicated, beautiful, strange life. It’s mine.
You say you weren’t a parent for very long. You don’t feel that once you’ve been a mother, you’re always a mother?
It rings a little false. I miss my kid. I miss caring for him. Sometimes I’d get a glimpse of who he’d have been if he hadn’t been sick and I wanted that kid. And I wanted to see him and meet him and know him. I’m glad I was his mother. I just wish I had been able to be it for longer.