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Alison Stewart: This is All Of It on WNYC. I'm Alison Stewart. Edith Lemay and Sebastian Pelletier decided to take their four kids and travel the world. It was a trip with a purpose. A few years ago, three of their four young children were diagnosed with a rare, incurable disease, which eventually would lead to permanent blindness. To create a strong visual memory for their kids before the disease affects their eyesight, Edith and Sebastian tried to fill their memory banks with visions of elephants and glaciers and mountaintops, by trekking around the world from Nepal to Egypt to Ecuador, Zambia, and Indonesia. Their travels and their tribulations are the subject of a new documentary from National Geographic. The film is called Blink. It's a New York Times critics pick and in theaters starting today. With me in studio now is co-director Edmund Stenson. Nice to meet you.

Edmund Stenson: Lovely to meet you.

Alison: And parents and film subjects, Edith Lemay. Hi, Edith.

Edith Lemay: Hi.

Alison: And Sebastian Pelletier. Nice to meet you, Sebastian.

Sebastian Pelletier: Nice to meet you.

Alison: Let's start at the very beginning. You got the news from your doctors about the condition of your kids. What do you remember feeling, Edith?

Edith: A void. Really, it's like all of a sudden your future is just erased, because everything you imagined for your future, you need to rethink it. A lot of sadness and anger as well.

Alison: Sebastian, where did the idea come up to travel the world?

Sebastian: We've always been travelers, even when we had kids, but in this instance, there's a different reason where when we got the diagnostic, there was not really anything we could do. Some specialists at [unintelligible 00:01:51] said, well, the best thing you can do is fill their visual memory, so you can look at books, giraffes and elephants and things like that. When she came home, we talked about it and we looked at each other. We're like, we're not going to show them in books, and we're going to go see it in real life.

Alison: This could have easily been a travelogue, that's all the film had to be. But you have these two parents, four kids, three with an encroaching disability. Aside from the great visuals, what else did you want us to understand about this family?

Edmund: I think for me and my co-director, Daniel Roher, as you say, it was very important to move past the travelogue and getting to know the family as we did at the beginning of the project. What became clear to us was that they were at a very early but important and crucial stage coming to terms with the condition. So from our perspective, it was about telling two stories at the same time. On the one hand, you have a kind of sense of childlike wonder, and that's really the visual repertoire and language of the film as we kind of get into the kids heads as they explore the world. And on the other side, we have the parents' more emotional journey in which you, in a sense, we're talking about, this is a film about grief, about letting go, and about things that don't necessarily concern a difficult medical diagnosis, but just about dealing with the unknown future and making a decision about how you want to do that.

Alison: Before we get into the travelogue of it, you have four kids. You took four kids on vacation. I have one kid. The idea that you took four kids around the world. Tell us a little bit about that.

Edith: Actually it's chaos at home, so it's the same chaos on the road, I think. It wasn't easy, for sure, but it was so much fun. It was so much fun.

Alison: They were all different ages. When you talk to them about their different-- Well, actually, I'll start with this. I'll start with you, Edmund. They're all different ages. All the kids are different ages. How did you want to show us who they were personally, through their behaviors?

Edmund: I think for us it was, we wanted to tell a gentle, observational story, largely. Again, to come back to the point we discussed earlier, it's easy to make a very emotionally exploitative, melodramatic version of this film. So we wanted to let their characters and their natures speak for themselves as much as possible. But what we realized in making the film is we perhaps needed to give the audience a short [unintelligible 00:04:18] and so you see that in the beginning of the film.

We do a very lovely kind of awkward and goofy family introduction where we get a kind of abbreviated sense of who the kids are. The film is always balancing that kind of joyful simplicity of getting to know the kids, with a more kind of gentle, observational way. It's kind of a balance of those two things.

Alison: To follow up on what Edmund said, the news causes a lot of sadness and a lot of grief in people. How did you manage those feelings?

Sebastian: Well, we had to get over it, and the hard part is at the beginning where you don't really accept it. You blame everybody and nobody, and you just, why me and why my children? It's something that you have to get over and once you do, then you start thinking of, okay, what's next? What can I do? There wasn't much we could do, but filling their visual memory was something, was an action we could actually take. That really helped us get into the action and say, "Here's something we control and here's what we can do." So for us, it was a way to cope with it.

Alison: How did you go through? Is it the DABDA scale, denial, anger, bargaining?

Edith: Exactly. All the phases of grief we went through, and it's something that we've done, but we keep doing on a regular basis, because that's one of the things with retinitis pigmentosa, it's gradual. So we're going to be grieving a lot of things, and they're going to be grieving the loss of some many things in their life. But the idea is to focus on what's left and what they can do.

Alison: We're speaking about the new National Geographic documentary, Blink, that follows Edith, Sebastian and their kids. They travel the world following the diagnosis of three of their four kids, having a rare disease that they'll lose their sight. It's in theaters now. So you and the kids create a bucket list for your travels. It's wide ranging. The funniest line is one of the kids wants to drink juice on a camel. I'm sure they've gotten that one a lot. It made me laugh. What guidelines did you give these kids when you said, "Okay, think of your bucket list"?

Edith: None, actually. That's the thing, because when we asked, we wanted to involve them in planning the trip, and when you ask a kid, like, which country do you want to visit? It's abstract. They don't really know, so we went, "Okay, tell us what activity you want to do." It started with something really easy. The first thing, I think it was, we want to eat ice cream, so that was fairly easy. But after that, there was no, like, everything was going on the list. When Leo said, oh, I want to see Pokemon in the wild in Japan, we put it on the list.

We started with something just for fun. We never took it seriously, really. But then, strangely, it became the backbone of our trip. When we were to see camel, all the other kids were so excited. They would come and see us and, "Do you have the juice box? Do you have the juice?" They were just so excited because we talked about it and made fun of it. It was a fun thing to do.

Alison: What was on the list that sort of surprised you, Sebastian?

Sebastian: As Edith said, there's things that, we knew that Colin loved trains, but he said, "I want to sleep on a train." Pokemons were, well, it's a kid's dream so it's like, why not just let it there and see what happens? The juice on a camel was a crazy idea, and there was all these other things that, you know, eat with chopsticks, meet friends. So it's all things that sound obvious, but when you start thinking about it, you're like, yeah, that's really the essence of traveling, you know? Yes, let's go for it. There's no barriers.

Alison: Edith and Sebastian took their kids to some pretty wild areas. What were your challenges as filmmakers?

Edmund: Yeah, I mean, I think that the chaos that Edith and Sebastian experience every day with four kids is something that, as a documentary filmmaker, to a small extent, your experience in making a documentary film, given that child rearing, especially with these four kids, is a question of pivoting at the last moment. It's as true of documentary as it is of having children. I think for us, the principal concern was not having a crew that was too big. We wanted to make an intimate and as much as we could, emotionally authentic story. So we tried to minimize those logistical challenges by keeping our crew to me, two camera people and a sound person.

So that made the question of logistics easier. We also were very lucky to collaborate with people in the communities where we filmed and stayed, and we had a lot of support on the ground that made it possible for us.

Alison: How did you explain, Edith, that these guys with the cameras and the mics are going to be around all the time for filming? Meaning the crew.

Edith: Actually they were not with us all the time. They came, like, four times during the trip, for a few weeks at the time. That's really different than having to live with them for the entire trip. With the kids, we just said, "Oh, there's people who are going to come filming us," and they were, "Okay." As soon as they arrived, they kind of look at them, tested them, and it was--

Alison: Tested them?

Sebastian: There was definitely a test.

Edith: There was definitely a test.

Sebastian: There was screaming, there was jumping, there was clambering, there was all the things.

Edmund: Asking for candies.

Edith: They got candy, so it's fun. But the connection was instantaneous between them and the crew, and from that moment, every time we would say, "Oh, the crew is coming, like, next week," and, "Yes." They were so excited. For them, it was really like having friends joining on the trip, and it was just pure fun for them.

Alison: One of things that was interesting is to see how much your daughter grew in the film. How is that for you to watch it back?

Edith: It's just so much to take in, especially now, even after the end of the filming. I'm looking at her. She's 13 now, going on 14. It puts it so much in your face, how fast it goes. It kind of make me want to hold on to Laurent. He's tiny and I know it's the end, but at the same time, it makes me so proud because she's growing to such a beautiful, intelligent young woman. It's amazing to have that captured on a film, that really precious period where she was just in between a kid and a teenager. It made me super emotional.

Alison: Sebastian, how did you school the kids?

Sebastian: Well, I have to give credit to Edith. We concentrated on specific aspects, such as mathematics and French. Everything else, we went to museums and they learned so much culture, languages, so it's the school of the world. They learned so many more things that they would normally in school, so we tried our best. Edith did a great job. Was not easy at all. I think that was probably the hardest aspect of the trip, to try to keep track and try to keep them disciplined. It was not every day, but in the end, they came back to school, no problem. They just integrated in each of their class, and it went well, so I guess--

?Edith: I got sick of math [unintelligible 00:12:03]

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Totally sick of math at one point.

Edmund: From my perspective, Mia seemed to be such-- to speak of her incredible sense of responsibility and intelligence. She, from what I saw, was the one that would so often guide her brothers and took on that responsibility.

Alison: Interesting.

Edmund: Is that fair?

Edith: Yeah, because it was really hard to, like, because we had specific time where we would be doing school, but you had to teach, like, three different level at the same time. So Mia was really good at doing her own thing independently and helping the brothers. She was really great. It was a challenge, but it's totally worth it.

Alison: We're having a conversation about the documentary Blink. We'll have more after a quick break. This is All Of It.

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This is All Of It on WNYC. I'm Alison Stewart. My guests are filmmaker Edmund Stenson as well as Edith Lemay and Sebastian Pelletier. They are the subjects of a Nat Geo documentary called Blink. It follows Edith and Sebastian and their kids as they travel the world, following three of their four kids being diagnosed with a rare disease that means that they will lose their sight. So we talk about three out of four kids. It means one of your kids, Leo, doesn't have the disease. Edith, how did that complicate the dynamics with the other kids and with yourselves?

Edith: Well, it didn't, actually, because they're kids. It's such an adult way of seeing things for kids. They really live in the present, so the disease doesn't affect them that much right now. It's something in the future, and so the dynamic right now, they're all the same. They can do all the same thing and he doesn't think about how it's going to be in the future, and he doesn't think about why me and not them? You know, why them and not me? It's just a fact for him and he accepted and he doesn't think further than that.

Alison: We've described Mia a little bit, and Leo. Would you describe your other two children for us?

Sebastian: Each has their own personality, and our third one, Colin, he's something else. He does his own path and in the movie, we called him weird but it's just, he's himself, and he's the kind of boy who's going to do jokes, but just for himself and not for the whole crowd and he's so happy about it. So he's kind of going on his own, doing his own thing, and doesn't need the approval of anybody. But he's dedicated and when he sets to a mission, you know, he was the first to bike ride. He was the first to ski on his own.

So he's really somebody who's focused and when he has a mission, he goes about it, but by himself. Laurent is the little clown. He's the one who wants approval around. He's the one who's really curious, asks all these questions and needs a straight answer. If you try to give him like a childish answer, he's going to say, "No, that's not the answer. Give me the real answer." He just has so much energy and he is the baby of the family, so he knows it and plays the part in a good way.

Alison: Edmund, any other additions to the kids?

Edmund: No, I just want to clarify that we do call Colin weird in the film, but to me that's the highest, highest compliment. This is truly the highest compliment I can see for any kid. I think Seb's exactly on point. Colin is a beautifully thoughtful and absolutely hilarious kid, whose jokes bring an insight to the world. It's not simply fun, but it's also a commentary on the world around him. I think there are many ways kids can express their intelligence, and that's how Colin expresses his.

Laurent is someone who you'll see in the movie is a real scene stealer. He's the boy who asks these disarmingly philosophical questions in ways that you can't necessarily anticipate. So these kids were a joy to film in that sense. They're still kids, so they're crazy, and they're going to clamber all over me as we're filming, but at the base, they have so much insight that it was such a pleasure to be with them.

Alison: It's interesting, when Laurent does put these philosophical questions to you, first of all, what's your first thought? Some of them are amazing.

Edith: The thing is with Laurent, he does that all the time. A lot of times he's like, "Oh, it's too early, I need a coffee to answer that question." And he wants an answer. It always takes me time to understand, okay, he's asking that question, but where does this question come from? I need to put together to really understand what is he asking, and try to give him an answer that's going to be correct, but deep enough so he accepts it.

Alison: How did you, as a couple, decide how much information to give your kids during this trip? Whether it be about safety, whether it be about if you're going to go to this place, it's not going to work out? How honest were you with the kids? What do you think?

Sebastian: We're fully open.

Alison: Yeah?

Sebastian: Yeah, and the way we see it is that if you put boundaries, they're going to limit themselves. If you don't, they're going to test it and see where to stop or where not to go, et cetera. For us is that we've always been fully open on everything and if they need help, we're there, but we're not the ones to put boundaries. So we've told them what the trip is about, what traveling is about. They knew a little, but shared our experience at the same time. We just went about the way we love traveling, and they followed, and they helped us, and sometimes they were the one more mature about it.

Alison: Did you have to-- I mean, at some points, it's a little scary. It's a little cold, like, you're not quite sure if the kids are warm enough when they're hiking. There has to be some sort of conversation between the parents, like, "Did we do the right thing? [unintelligible 00:18:31] What do we do here?"

Edith: So many times you're like, why are we doing this? Why are we putting our kids through that? But I remember one time we did that. It was in the beginning of the trip and we were in an overnight bus and there was no place on the bus, and Colin had to sleep on a little suitcase. It was in the middle of the alley in the bus, all night. He was curled up on this little suitcase and I tried, "Do you want to come and sit close to me?" I felt so bad all night and those questions came, why are we doing this?

But you know what? In the morning when he wake up, he looked at all his brothers and his sister, and he's like, "You know what? I had the best place on the whole bus." And from that moment, I understand, like, I'm not going to put my fear and my discomfort on my kids. If they have some, they're going to express it, but they don't have the same- they don't see the world the same as we do.

Alison: I don't want to give away too much but there's a scene in the film which is really tense, and it involves you being trapped, and it's not clear when somebody's going to find you, how long you're going to be involved in this trapping situation, and you know very little what's going to happen. In what way was this event a lesson for you about what your kids are going to face in the future? It's dark. There's no light.

Edith: It was really-- That event happened at the end of the trip after a year of traveling, and for us, the way they took it and how easy it was for them to go through that experience would be, I guess, traumatizing for a lot of adults, but for them, it was just like an uncomfortable event. It just showed us how much they've learned throughout the trip and how it's going to serve them in the future. They can adapt to any situation. They can stay focused on the positive, and that was really, really reassuring for us as parents.

Alison: Edith, what did-- Excuse me. Edmund, what did you notice about the difference of the kids at the end of the trip? They've come back. They've gone to school. This is who they are now as opposed to when they started.

Edmund: Yeah. I mean, it's a delicate question because I think it speaks to something that Edith and Seb have been saying. There's this moment as we return home, and we have this emotional moment with the family as the kids get home. We have a scene, we have an interview moment, in which Leo, the eldest boy, looks to the camera and looks to the crew and challenges us to justify a question. He says, "I know what you're going to ask me, how have I changed? But how am I supposed to answer that? I don't know how I've changed." And for me, we wanted to avoid making too many grand claims about differences like that, and so we tried to make the film especially observational and gentle in that moment.

You see Laurent going on his first day of school. You see Mia as this teenager going to her first party and saying goodbye to a part of her childhood. We really wanted the images to speak for themselves and to make this a universal truth that we move on, we grow up, but this isn't some dramatic change. It's simply a continuation of life as we get older, and so that was key for us to try to-- Leo ends up standing in for the directors there and saying, this isn't some-- We don't want to over dramatize the beauty of the everyday, because the everyday is beautiful for the very reason that it's full of small details.

Alison: The name of the film is Blink. It's in theaters nationwide today. Thanks so much to Edmund Stenson and Edith Lemay and Sebastian Pelletier. Thank you so much.

Sebastian: Thank you.

Edith: It was a pleasure.

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