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'Still Point': A Meditation On Mothering A Dying Child

Emily Rapp is also the author of Poster Child, about a congenital birth defect that led to the amputation of her leg when she was a child, and about how she subsequently became a poster child for the March of Dimes. (Penguin Press)

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."

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.

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."


Interview Highlights

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 JobI 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."

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."

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Transcript

TERRY GROSS, HOST:

This is FRESH AIR. I'm Terry Gross. Just about the worst news a parent can get is the news the doctor gave my guest, Emily Rapp, when her son Ronan was nine months old. Ronan had Tay-Sachs, a disease that leads to the degeneration of brain tissue and results in the body's systems gradually shutting down.

Tay-Sachs is acquired genetically, but only when both parents are carriers of the defective Tay-Sachs gene. Emily Rapp has written a heartbreaking memoir about raising a child she knew did not have long to live. Her son Ronan died one month ago, before his third birthday. Emily Rapp's first book, "Poster Child," was about her own congenital defect, a bone and tissue disorder that led to the amputation of one leg. She was actually a poster child for the March of Dimes in 1980. Now she has a pretty state-of-the-art prosthetic.

Rapp is a former Fulbright scholar, a graduate of Harvard Divinity School and is now a professor of creative writing and literature at the Santa Fe University of Art and Design. Her new memoir is called "The Still Point of the Turning World."

Emily Rapp, welcome back to FRESH AIR. I'm so sorry about your son's death, and...

EMILY RAPP: Thank you.

GROSS: ...a little later we'll talk about the new chapter that you're beginning, of life without him.

RAPP: Yes.

GROSS: But let's start with a reading about getting the diagnosis that your son Ronan had Tay-Sachs disease. And in this part of your memoir, you're in the doctor's office, and you and your husband are in shock because you just got the diagnosis.

RAPP: (Reading) Well, what can we do about it? Rick asked, glancing between me and Ronan and the doctor. But I knew enough about Tay-Sachs to know that there was nothing at all for us to do, and that my life, the life as a new and hopeful mother, was over. The doctor looked at the two of us. No, I'm so sorry, he said. There's no way to fix it.

(Reading) They die, I stuttered. I had the sensation of skin falling away from bone. I hugged Ronan more tightly. They die. I wanted to vomit, and my grip on Ronan was scaring him. I loosened my arms slightly. What? Rick asked. Surely...

(Reading) They die, I said firmly, in a high-pitched voice, and this time he understood that I meant Ronan, that Ronan, our boy, our baby, our child, would die. The world was broken, and the three of us - Ronan, Rick and I - were falling into its mouth.

(Reading) Nerve damage begins in the womb and progresses quickly, leading to dementia, decreased interaction with the environment, seizures, spasticity and eventually death: paralysis, blindness, deafness, loss of all faculties.

GROSS: That's Emily Rapp, reading from her new memoir "The Still Point of the Turning World" about her son Ronan, who was diagnosed at nine months with Tay-Sachs disease and died in February. Emily, when you got the diagnosis, like you know, like you said, like you knew babies with Tay-Sachs die and that there was really nothing you could do to prevent that. There's no cure. There's no treatment.

But there are things you could do to keep him as comfortable as he'd be capable of being. What were some of those things you could do?

RAPP: Well, he loved - because as he went blind, he sort of had an experience that was entirely somatic. He went on a lot of hikes. He went to a lot of parties. He...

GROSS: When you say he went on a lot of hikes, you mean you carried him.

RAPP: Well, I hiked him with. Yes. He did not hike. I hiked with him, and we took him outside, and a lot of walks in the stroller. And I sort of - the way that I processed his, I think, sort of regression into this state of non-movement and non-interaction was to introduce him to probably as many people as I possibly could.

So I invited almost every friend I've ever had throughout my life to come and see him and visit him and hold him. And he also loved to eat. He was really into food. And so he ate a lot. And, you know, very simple, simple, day-to-day things that he enjoyed.

GROSS: So, you know, parents always learn about developmental milestones, you know, at what age the baby usually starts walking and saying mama or papa, or whatever the name is for their parents.

RAPP: Right.

GROSS: And, you know, when they understand that something is out of the room or in the room and all this. And you had to learn what the reverse milestones were going to be, the signs of his regression, of his slow shutting down. What were you told to watch out for?

RAPP: Seizures, first of all, and those were controlled by medication. So that was one intervention that we chose. You know, they just, they stop - they just kind of stop. They stop at six months, and then they sort of unravel from there. So, you know, and it happened over such a long, torturous period, that it's kind of difficult for me to remember when those things happened, because it usually wasn't very dramatic. It was just a very, very slow fade, which is how one of the other Tay-Sachs moms once described it to me, was as a slow fade.

And so, you know, but you're constantly - and when you have a child with a terminal illness, part of the devastation of the caring is that you live with constant dread. And it's not just dread, but it's dread that's going to lead to the most dreadful thing. So it's not - it's like a horror story, in that sense. But being with Ronan was actually great, because he was so sweet and fun to be around, and everyone loved him, and he was a gorgeous baby and snuggly and had his own little personality, despite having Tay-Sachs.

GROSS: So, excuse me for asking this, but when you say he was fun to be around, what do you mean?

RAPP: He had just this amazing energy. I mean, first of all, before his illness progressed to the point where he was no longer interactive, you know, he would play with toys and he giggled, and he would look at you and smile. I mean, he was like, you know, a regular baby. So he was fun in that sort of sense.

Later, when he became less interactive, he just - you know, his presence was so - and I don't use this word lightly - I think powerful. I mean, people really responded to him because he was just totally at ease, if that makes sense. He was just quiet and peaceful and sweet and gorgeous. And so it was kind of - it was just a joy to be around him.

GROSS: Emily, you took your son to hospice, and you got some very interesting advice from the hospice staff. And they talked to you about how you'd have to make decisions about how far to go with interventions, like you'd have to decide if you're going to do a feeding tube or not. What were some of the turning points the people at the hospice told you you'd have to look out for and have to make a big decision about whether to go on or let him go?

RAPP: Well, you know, it's interesting, because what's great about hospice is that they're really, like, moment to moment. So there would be a day when he was coughing a lot, and I would - you know, one of us would call and say: He's coughing a lot, but what can we do to make him more comfortable? Or it looks like he doesn't want to take food anymore.

So it actually wasn't, like, they didn't sort of plot it out for us, because everybody is different and because they watch people and accompany people while they, you know, unravel into death, which is sort of how it was described to me. Then there's no real - you don't - it's not so much looking out, as it's just watching and just saying, OK. What's today like? And not sort of fast-forwarding into tomorrow, which is really hard to do.

But they were great. I mean, you know, they were available at all times and would work with all kinds of people to do things that are in their comfort zone, whether or not that's, you know, at the end saying, like, OK. Give all the machines, we can't let him go. They don't have any judgment about those decisions. So I think that's a very safe place to be when you're asked to make bad decisions, that people aren't going to judge you for what you do.

GROSS: When you say bad decisions, you mean, like, painful decisions.

RAPP: Painful, yeah. I don't mean bad as in morally bad. I mean, you know, to have to make a decision about whatever it is, what kind of seizure medication, or he's having trouble doing this, do we start to use the suction machine, do we not, how is that comfortable, how is it, you know, increase his uncomfortability level.

I mean, all of those decisions are - sort of don't have happy endings in either case, but there's not a right way to do it. And they're very adamant about emphasizing that.

GROSS: You write that at each stage of potential intervention, the hospice medical staff would say things like, ask yourself: What does this lead to, and what is it for? Can you describe what that meant to you?

RAPP: I just think it meant that, you know, getting a terminal diagnosis like Tay-Sachs, which has really no proven effective treatments and no, you know, no cure, although people are working on that, you know, it's difficult to say, well, if I do this, he's going to get another six months, or whatever, because he may not want another six months. His body may suffer more if he has that additional time.

So it was really just saying, OK. Well, if we stop food, or if we use this oxygen machine, it's not making his life extend, which is what we didn't want to do. It was making it comfortable. So it's kind of hard to describe it because it's so unique to each baby, and they're so adept at kind of leading you through and just saying, well, how's today? And what does it seem like? Taking his vital signs, he seems great. He seems uncomfortable. What can we do?

So it's just kind of, you know, seeing what happens on a daily basis. It's - I don't - it's really difficult to describe how in the moment it is.

GROSS: So did you find yourself constantly having to think about what level of life was meaningful for your son, what level of life was worth preserving?

RAPP: I think so. I just - you know, it was - that was the worst part, was nobody wants to lose their child. I mean, it's horrible. It's the worst thing you can imagine. But I also, you know, didn't want him to suffer. And that was really the sort of - the primal impulse shifted from how am I going to launch this child into the world to how am I going to, you know, make it possible for him to have the most peaceful passing, which is also - could be framed as a primal parenting goal.

So that's a very big shift. But it is still a kind of parenting. You know, Ronan was a very loved boy, and I don't think he - I don't think he suffered terribly. I hope not. It's hard - of course, he couldn't really tell us. But that's when the hospice came in and they'd say, well, this is what happens when the body does this, or this is what happens when the body does that.

And so they were sort of the guide to when he'd stopped having obvious clues or cues to how he was feeling.

GROSS: What were the turning points for you where you had to decide is this is the end, should it be the end, should we do something that will probably help him live longer, or is it time to let him go?

RAPP: You know, I think I won't talk about that, just because it's - I don't really want to talk about his death so much. And those decisions were so wrenching, and I'm not sure I want them public, if that's all right.

GROSS: That's fine, and I certainly respect that. Could you gauge his level of pain at all, since his responses were not kind of typical responses, and there was a limit to his ability to communicate?

RAPP: Yeah, I think so. I think so. I mean, the thing about, you know, Ronan was that people were watching him all the time, looking at him and touching him. So when there was a problem, it was pretty evident, I think. And it's hard to describe it to someone, because the cues are subtle, and people who cared for him on a regular basis would understand them, and people who didn't would probably miss them.

But since he had sort of the same caretakers for most of his life, we got it. But, yeah, he was - and most of the time, he looked, I have to say, he looked so peaceful most of the time. He looked peaceful, and he slept a lot and he loved to be held. And those are the kinds of memories that I try to focus on when - I mean, obviously, when I'm sad, which is all the time.

But I like to think about him when he was just peaceful and happy and that, you know, now he's free of any of the suffering he might have experienced, as now he is set free from that. And that is a relief.

GROSS: My guest is Emily Rapp. Her new memoir about her son is called "The Still Point of the Turning World." More after a break. This is FRESH AIR.

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GROSS: If you're just joining us, my guest is Emily Rapp, and she's written a memoir about her son and caring for him. Her son Ronan was born with Tay-Sachs disease in January of 2011, and he died in February of this year, when he was two years old. Tay-Sachs is a disease that is progressive, and the body and brain just start to shut down.

You quote a lot of, like, fiction and nonfiction that you'd been reading and that meant a lot to you during the period that your son was alive.

RAPP: Yes, yes.

GROSS: And one of the things that you quote is Simone Weil, and this is a quote about waiting for God, and she writes: "Waiting for God, not as a passive action, but as a patient practice, one that required concentration as well as stillness and a hope that refused to fixate on a particular pre-determined outcome." Why did that quote mean a lot to you, and what did it mean to you?

RAPP: I think I like her thought process because it's very intellectually gymnastic. So it was a kind of distraction to have to follow the train of thought, and at that time I really needed to be - I needed my mind to work on other things besides despair. I needed it to be busy. And I also - that particular passage that you quote is something I love, because it implies that there's no activities to do in order to make things or to marshal things in a certain way that will fix your life or fix the situation, that you just have to wait for meaning to reveal itself.

It may never reveal itself. And I really didn't want anyone to give me any hard and fast answers, and she offers none of that in her work. It's all about just thinking deeply about difficult subjects.

GROSS: So that quote from Simone Weil about waiting for God not being a passive action but a patient practice, one that requires concentration, as well as stillness, and one that shouldn't have a particular predetermined outcome, that strikes me as a very Buddhist kind of approach.

RAPP: Yes.

GROSS: And you went to a Buddhist center for hospice workers and for others who are involved with end-of-life care, people who wanted to integrate a contemplative meditation practice with compassionate end-of-life care, or, as you put it, the ideas that a person who is hysterical is not the best companion for someone who is experiencing the final moments of life.

RAPP: Yes, that's true.

GROSS: So what are some of the ways that this Buddhist center for people giving end-of-life care was helpful to you?

RAPP: I mean, it was amazing. It was really difficult. It was called - or is called the Upaya Zen Center, and it's Frank Ostaseski - I think I'm saying his name right - and Roshi Joan. And they led the weekend. And, first of all, there's so much meditation, which if you've never done before, as I've never been a good meditator, it's a lot of sitting. And if you're really in a bad mental state, it's very difficult to sit for an hour with all those feelings churning and be still.

And so that was challenge. And also, at one point during the weekend - I think I talk about this in the book - we looked at people's death photographs, which is something that Buddhists do, or at least these particular Buddhists did. And some of them showed signs of struggle. There were babies. There were older people. There were spouses. There were pictures of the whole family sort of in the bed with the person who'd just died and covered in the 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, I think, for a while, and then it kind of lifted. And it also, 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.

So it was a very difficult weekend, but hugely important. And also what was great about being in that community just for three days, or whatever it was, is that when you'd say, well, why are you here, people were asking, and a lot of our meals were in silence, but the group ones - and, you know, well, I have a baby who's dying, or we have a baby who is dying, and nobody would get hysterical or react. There was no reactivity to that statement, which is another difficult thing about having a sick baby, is that you're constantly dealing with other people's freak-out, because of course when someone tells you that, it's, like, the worst thing ever.

But people were like, OK. Well, that's - well, you know, how is it, and how is he doing? It was just non-reactive. It was very calm. And I found that pretty phenomenal, and it really stayed with me.

GROSS: So one of the leaders of this Buddhist hospice weekend, Roshi Joan, said: I don't console. What did she mean?

RAPP: I think she meant that, you know, there's so much about what we say to one another and to other people - it's going to be OK. You're going to be fine. And sometimes you're not going to be OK, and you're not going to be fine. So she doesn't - and when people are dying, you know, and they're kind of where am I going to go? And she said, I think, she said something to the effect of: You know, we don't know.

You know, you die, and you move into some other part of the universe. But, you know, Buddhists don't have a particular understanding of the afterlife in the way that Christianity would describe it, right. She just, you know, I guess doesn't soft-pedal the fact that, yes, death is going to happen to all of us.

And another thing that she talked about in some of the chanting that they would do after every meditation session - I can't remember precisely the words - but was basically like don't waste your life. Your life is short, and you don't know when it will end. Don't waste your life. I think that's one of the - I don't know for sure, but I think that's one of the phrases that was repeated after a meditation session.

So I think that influenced me in this idea of, OK, well, life is short. And it's cliche, but when you have a baby who's only going to live for three years, it really comes clear. And so what now? So, yeah. I'm very, very thankful that I was introduced to that, those hospice care workers and heard their stories about how their clients or patients had died, funny stories, sad stories, devastating stories. You know, it ran the whole gamut of human emotion, and it was very powerful.

GROSS: Emily Rapp will be back in the second half of the show. Her new memoir about parenting a baby dying of Tay-Sachs disease is called "The Still Point of the Turning World." I'm Terry Gross, and this is FRESH AIR.

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GROSS: This FRESH AIR. I'm Terry Gross back with Emily Rapp. Her new memoir, "The Still Point of the Turning World," is about parenting a baby she knew didn't have long to live. Two years ago, when her son Ronan was nine months old, he was diagnosed with Tay-Sachs, a disease that leads to the degeneration of brain tissue and is always fatal. Ronan died last month before his third birthday.

So I know you don't want to talk about your son's death, it's just too close and too personal now, but tell me if you feel comfortable talking about this. You completed the book before your son died...

RAPP: Yes.

GROSS: And you sent it to your publisher...

RAPP: Long before, yes.

GROSS: Yeah. And it came out, it's so odd. It kind of - the publication almost perfectly coincided with your son's death.

RAPP: Right. It's a lot at once. Yes. You know, there was some, 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, I guess able to 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. And I thought about that 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, you know, grandparents I've never met and other Tay-Sachs babies that I've met and who have since died. And which is so interesting to me because it's everything that I talk about being silly in the book. At the end those were the images that I was like, yes, he'll be there and like my grandmother will be there. And so I think we want so badly to know that we're going to be OK after you die and that too was hard for me to just think, you know, you know, and it still is, that, you know, I don't think I'll ever - I won't see him ever again, and that is a huge hole.

So, you know, I will say that I never actually wrote this intending it to be a book. I wrote it as a series of blog posts in the, you know, most of 2011 - at least January to the end of the summer- in a sort of fugue of grief and hysteria, essentially. And I did it because it gave me something to do and I desperately needed that and I just felt like it was my only lifeline to some kind of hope. You know, the readers were like my friends. My girlfriends basically 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 wasn't, I didn't want to talk on the phone all the time, and it was really the only thing that gave me peace in those, in that first year of Ronan's diagnosis, it was the thing I wanted to do every day, was to write and was compelled to do it in this way that I'd never been before.

GROSS: When your son was first diagnosed with Tay-Sachs in January 2011, when he was nine months old, among the many things that panicked you was the thought that maybe you hadn't gotten tested for Tay-Sachs.

RAPP: Yeah.

GROSS: You thought you did but maybe you didn't really. And it's, you know, it's a genetically passed on disease.

RAPP: Mm-hmm.

GROSS: You were tested.

RAPP: I was tested.

GROSS: You confirmed that you were tested.

RAPP: Yes.

GROSS: And yet it wasn't detected. Can you explain why?

RAPP: Yes. So Tay-Sachs disease is commonly understood as a disease that manifests in Ashkenazi Jewish population. This has been the sort of standard genetic counseling advice, and is - what people often say is when you stay Tay-Sachs, they say, oh, how can your baby have Tay-Sachs? You're not Jewish. So there's a real connection between having Ashkenazi Jewish heritage and being at risk for Tay-Sachs.

So when I asked for the Tay-Sachs test they said, well, you don't really need it because you're not Jewish. And I said I'd like to have it anyway. But Tay-Sachs has 100-plus mutations, genetic mutations, and the standard prenatal test detects I think nine of them and all nine are common to the Ashkenazi Jewish population. So there's a whole other set of the mutations that aren't detected by that test. So yeah, I have a genetic mutation that apparently -which was a shock to me - manifests mostly in people who are Moroccan. Who knows. Our genes are old and weird and mysterious, so I didn't know I had any Moroccan heritage, but apparently my genetic code does. So that's why when I had the test I didn't think I needed to worry. And also, Tay-Sachs is very rare. There's that too. So I, you know, I thought I was in the clear in that respect.

GROSS: So you had a genetic test that did not show that you were a carrier for Tay-Sachs.

RAPP: That's right.

GROSS: You've written that had you known from prenatal tests that you were carrying a baby who had Tay-Sachs, that you would have had an abortion, you write, without question and without regret.

RAPP: Mm-hmm.

GROSS: Although this would have been a different kind of loss to mourn and would by no means have been a cavalier or uncomplicated decision, or a heartless decision. And then you write, I'm so grateful that Ronan is my child. I also wish he'd never been born.

RAPP: Yeah. Yes, that's true.

GROSS: Can you tell us - and I know this would be hard to talk about - why you feel it would have been an act of love to have an abortion had you known?

RAPP: I think Tay-Sachs is - what's so devastating about it is there's just nothing to do. It's so hard to watch a baby begin a life of being a baby, being a person, and then just lose everything. It's, I don't think it's - it's devastating to the child. It's devastating to the parents. It's just a death sentence. It's not a disease that is manageable in the sense that there might be interventions that would really increase quality of life. And I think if I had known that - if I could have spared a child the kind of life that Ronan had, I would, because he died. I mean he his brain didn't function and he didn't really have a chance to live in the world in this full rich way that I think is sort of - should be everyone's birthright in some respect.

That doesn't mean that I think that if - I mean I have a disability myself so I have very, you know, strong opinions about the fact that bodies can be all kinds of ways and that there are all kinds of manifestations of physical ability. So I don't think - again, I'm not cavalier about that decision. But I would have, yes, because there would have been - it would've saved suffering on so many levels. And so I think that's, that would've been my choice. I think other people would make a difference one and I think that's fine. I mean people can do, that's why it's a choice, why it should be a choice in my opinion. So yeah, I also love that Ronan was my baby and I can't quite imagine, he changed my life so much, that I can't imagine not having had him or having had these years - as difficult and strange and wonderful as they were. But I don't think if I were sitting in a doctor's office and someone told me that I was going to have a child that would lose every single faculty and die, I would choose to have it.

GROSS: Is it hard to hold both of these thoughts at the same time...

RAPP: It is.

GROSS: ...that you're so grateful that Ronan and was your child and you also wish he'd never been born?

RAPP: Yes. But I think it is a kind of duality that can be held. It's not an easy thing to think about, but it, yeah, it's deeply, deeply sad and horrifying and hard to reconcile. And also I, again, really loved my son and I think people who read this book will understand that he was incredibly special and sweet and that he changed many people's lives. So I'm grateful that he had the kind of - that kind of life and that his father and myself and my parents and my friends loved him in a way that allowed him to live as fully as he could have. But it still isn't, it's still not something I would've chosen for him.

GROSS: If you're just joining us, my guest is Emily Rapp and she's written a new memoir called "The Still Point of the Turning World," about her son Ronan, who was born with Tay-Sachs disease and died in February, shortly before his third birthday.

Emily, let's take a short break here and then we'll talk some more. This is FRESH AIR.

RAPP: OK.

(SOUNDBITE OF MUSIC)

GROSS: If you're just joining us, my guest is Emily Rapp. We're talking about her life with her son Ronan who was born with Tay-Sachs disease. He was diagnosed when he was about eight or nine months and he died in February, shortly before his third birthday, and Tay-Sachs is a disease that is progressive and the body and brain just start to shut down.

As you mentioned, you were born with a bone disorder, which I think was genetic.

RAPP: Yeah. Oh, it's congenital.

GROSS: Congenital. Yeah. Yeah.

RAPP: Just a fluke in other words. Yeah.

GROSS: Yeah. Yeah. I'm sure you've thought about this, but the fact that you were born with one congenital disease and your child is born with another seems like lightning striking twice. You know, like what are the odds...

RAPP: Yeah, it doesn't - it's not great.

GROSS: Yeah. Right.

RAPP: Believe me, I've definitely thought about that.

GROSS: And then it's easy to have this attitude well, you, you know, you were dealt a bad hand when you were born with this, you know, congenital disease. What were the odds that your child would have, you know, a different and far worse one? You'd think you'd be spared that, but of course you weren't spared that.

RAPP: Mm-hmm. No.

GROSS: And as you write in your book, you know, you suffer for one thing, it doesn't mean you're going to be spared from suffering with something else.

RAPP: So true.

GROSS: You know, just...

RAPP: Nobody gets a free pass. Nobody gets one.

GROSS: Do you spend a lot of time thinking about that?

RAPP: Oh yeah, I still do. I mean it really shifted my understanding of things like luck and what does it mean to be lucky, and how do we judge whether or not someone is lucky or, as a term we often use, blessed, in their life. And, you know, I had this period when I would go out in Santa Fe and this was like in the year that Ronan and was diagnosed, and I had written something for the local paper about him and how grateful I was to the community for being so supportive. 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 of this world, it is the thing that can touch us some time in our life. And that that doesn't mean that we're bad people or that we deserve bad luck or that we're even unlucky. It just means that that's what happened. So when people would say to me things like - another helpful not comment that people often made was, you know, I would die if I was you, if I were you. And I thought, OK, first of all, no you wouldn't. And secondly, like that really doesn't help me at this moment.

(LAUGHTER)

RAPP: That really is not something you say to a grieving person, I would die if I were you. So I think people often use sort of people's disabilities, one, or people who have other sort of tragic body experiences or tragic experiences in general as a mirror for their own fears. And it's deeply isolating for someone who's grieving to have someone say I would die if I were you. I mean I don't know where to put that. I mean it's just pure pity, which really isn't very helpful. A more useful response would be wow, that's really terrible, like what can I do to help you? Or I just, you know, that's terrible and unfair. Just like speak the truth of it. And that to me as a gesture of empathy which invokes this reality that we're all going to be touched by something, by some chaotic experience, quote, tragic experience, and we are all going to experience loss and we are all going to die, and that is sort of the fundamental truth of human life that phrases like, well, I feel so blessed try to I think sidestep a little bit.

I don't mean to say that people should be grateful when they're happy, but I do think when people would say that to me, holding up this mirror, or say I'm so glad I'm not you, another helpful phrase, I would think, you know, you don't know anything about my life. You know, my life is really complicated, it's really sad, but it's also really beautiful and rich and has a lot of interesting things going on in it. You know, we just don't know the full truth about what's going on with someone. And again, these interchanges happening in the grocery store line aren't exactly the opportunity for those connections to take place. But it did make me think about those phrases that we toss off all the time: I'm so blessed, I'm so lucky. Like I don't know what it means.

GROSS: So can you talk a little bit about how your life is changing now?

RAPP: Yeah, I'm on a book tour for this book, which is strange and exhausting.

GROSS: Is that a good thing in the sense that, you know, you just lost your son a month ago and...

RAPP: Yeah.

GROSS: ... being on a book tour is like an alternate reality, because you're just...

RAPP: Oh, it's so weird. I know.

GROSS: You're not home. You're taking one plane to another plane, one city to another city...

RAPP: Yeah, it's so weird. And you're talking about yourself and your work all the time and...

GROSS: And you're talking about yourself and your work all the time, and it's not real life. So in one way it's kind of postponing the reality of your son's loss and your daily life without him. And on the other hand...

RAPP: Yeah. Yeah.

GROSS: ...maybe it's a nice - a nice kind of bridge into this new life that you're going to have. You know, this new after-Ronan life.

RAPP: Yeah. I mean I - I think that's true and I also think, you know, for me, and people - 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. It was January 10th, 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 the grief is different than it was. It's just qualitatively different. And not that it's not still devastating but it was devastating to watch somebody deteriorate, 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.

So I think for me - and I think everyone grieves differently and I think it's really hard to say what's right or wrong - for me that first year was really the worst because watching him change and just all the hopes kind of dashed and the kind of sprinting to the end at the beginning was how I grieved. Many other friends who watched a loved one go through a long terminal illness who've had the same response when their mother or their child or their, you know, spouse died they felt of course this huge gaping sadness but also relief that for them the body was no longer suffering or was no longer housed in a form that had nothing - could not do anything in this world anymore. So I think this, yes, book tour is strange and surreal and exhausting, and also great, in the sense that I feel proud of how Ronan is depicted in this book.

And I think it shows that he did - there was meaning to be found in his life and I think it grapples with issues of grief and loss that are universal, no matter if you have a child who has died or will die. So I don't know. I mean, in the next stage of my life I will say I'm going to switch to fiction for a while. Because I am ready to go back to writing fiction, which was how I started as a writer.

And I do miss that, having a little bit of a distance when talking about the work, at least.

GROSS: Would you like to end by sharing one of your favorite memories of your son?

RAPP: Yes. That's such a good idea. I have - a friend of mine came to visit and - I don't remember, I think it was the summer; it would have been August of 2011 - and my friend Megan came to visit - a childhood friend. And we went on a hike in the Borrego Trail, which is a hiking trail in the Santa Fe mountains. And I had Ronan in the front pack because he was still small enough to be carried.

And we took him out and my friend Megan takes, like, a million pictures so there's so many photos of this day which might be why I remember it. So I thank her for doing that. I took him out of the pack and just, like, we kind of rolled him around in the mud. And he just thought it was like the funniest thing ever. He loved it and he was kind of giggling. And we were moving his arms and legs and stuff.

But it was clear that it made this - he was happy and looked like he was enjoying himself, and of course, got completely covered in mud. So that's one of my favorite memories. And a lot of them are just - I loved talking walks with him and I loved sleeping with him in the bed, sort of snuggling him. And sort of having him in the front pack and having him close. Like his body was very comforting to me in its, sort of, sweet presence.

So I have a lot of really beautiful memories of him.

GROSS: Well, Emily Rapp, thank you for sharing some memories about your son. Thanks for talking...

RAPP: Thank you.

GROSS: ...with us about his brief life. And, you know, I wish you well.

RAPP: Thank you.

GROSS: Emily Rapp's new memoir is called "The Still Point of the Turning World." You can read an excerpt on our website freshair.npr.org. Coming up, TV critic David Bianculli reviews two new drama series: "Top of the Lake" co-written and co-directed by Jane Campion, and "Bates Motel," a prequel to Hitchcock's "Psycho." This is FRESH AIR. Transcript provided by NPR, Copyright NPR.

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