Q&A: Jessica Kensky and Patrick Downes on what it means to tell their own story, 5 years after the Boston Marathon bombings

The Cambridge couple have written a children’s book about Kensky’s recovery and her relationship with her service dog, Rescue.

Jessica Kensky and Patrick Downes with her service dog, Rescue.
Jessica Kensky and Patrick Downes with her service dog, Rescue. –Suzanne Kreiter / The Boston Globe

Things were not going as planned.

Standing in the March snow, Jessica Kensky and Patrick Downes watched as Kensky’s service dog, a black lab with huge jowls named Rescue, attempted to chase after a ball for the sake of a video highlighting the couple’s forthcoming book, “Rescue & Jessica: A Life-Changing Friendship.”

Rescue and Jessica Book Cover

But with the snow frozen across the top, the almost 6-year-old lab began slipping “all over,” the ball tumbling into the back of his throat.

“He spit it out and then he started coughing like he had a hairball,” Kensky told Boston.com. “They wanted these angelic running shots of him, and it was just like the total opposite. But we’re just hysterically laughing.”

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The 36-year-old said such moments are an example of how her service dog has brought not just physical aid, but emotional comfort to her and Downes, 34, as they recover from the severe injuries they sustained in the 2013 Boston Marathon bombings.

It is Kensky’s experience as a double amputee, and her relationship with Rescue that is the focus of the couple’s children’s book, due out Tuesday and illustrated by Scott Magoon, who has his own connection to the marathon bombings. He was running in the 2013 race and was between the two blasts, with his family in the crowd nearby.

Written for 5- to 9-year-olds, the book does not mention the circumstances that led to Kensky’s injuries, but the couple said over the years they have noticed children are innately curious about the prosthetics they both wear and the red service dog cape Rescue dons in public.

“Patrick would always take the time to talk to kids and explain prostheses to them or how Rescue helps us,” Kensky said. “At first, it didn’t seem like what happened to us was your typical topic for a kids’ book and doesn’t really naturally lend itself to being a kids’ book. But our injuries and our recovery is what we focused on, and I think that was really something that kids are so curious about.”

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Boston.com caught up with Kensky and Downes who are settling back into life in Cambridge, having spent three years living at Walter Reed, to learn more about their experience writing the children’s book and how it feels to be telling their own story as the fifth anniversary of the bombings approaches.

Editor’s note: This interview has been lightly edited for clarity and length.

Boston.com: Was the idea for a children’s book the first time you thought of writing about your experience?

Jessica Kensky: A lot of people assumed we would write about our experience and assumed it would be a book for adults. They would say, ‘When are you going to write your couple’s memoir?’ or ‘When are you going to write your husband/wife tell-all?’ I understand why they said that and why they thought that, but that was never appealing to me.

Patrick Downes: What we kept hearing is, ‘You should write it, and you have to write it now.’ That there’s this window for people where it’s relevant, and that always just struck us as being inauthentic. We’re still making sense of all the different complexities of this, of our bodies, of our relationships. So we wouldn’t really want to write a book unless we had flushed those ideas out more. And if society had some kind of like abstract timeline for us to do it on, it just didn’t seem right.

This was something for us to engage kids with, to have a conversation with them, specifically about people with disabilities and service dogs. But there are also some other themes that have resonated for us. I think Rescue represents and embodies all of the support systems that have been involved in our recovery, all of the people who have been there to help us bounce back when we needed it. The character Jessica keeps encountering struggles and has to learn new ways of doing things, and that’s true for children. They’re constantly learning and practicing and running into obstacles and then trying to figure out how to overcome them.

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JK: I think it was important too — we’re so sick of talking about the bombings and think that it’s just been over publicized and over focused on. So for us, if we were going to write something, it was definitely not going to be about that, and it was going to be about these bigger, more relatable, widely-understood themes. Then we thought once you do that, you take the time pressure off. Because it’s not really about the bombings, so you don’t have to catch people in this period of time where they’re still interested by it because it has a different application. And an application that we hope is much longer lasting than just people’s attention span on the latest tragedy.

Your story has been written about and portrayed both in film and in the media for several years now. So how did it feel to be telling it yourself?

JK: Really, really good. You know, I’m a nurse. Patrick is a psychologist. We didn’t know a lot about the ins and outs of Hollywood or making a documentary or TV news productions or being in a newspaper story. And the bottom line in all of those different things is we didn’t have the final say or editorial control. … No matter how much you talk about something before you work on a project together, when you don’t have final say at the end it’s never going to turn out at the end like how you wanted or hoped. So we had a lot of hard lessons on the way, and this is the very first time that we have had creative control from beginning to end.

It’s the first time, now that we’re doing the media stuff again, it feels so good because we’re talking about something that we worked really hard on and we’re really proud of, instead of a really terrible day. And that’s a very big shift.

Was there a part of the book that was the most difficult to write?

PD: I think there were two hard parts for us. One was the language around how we describe Jess’ amputations. As adults colloquially say, and Jess and I say this all the time, we lost our leg. So we originally had that in the text, but, as we read it back and as we got feedback from other people, they said, ‘You know, kids lose their backpacks, kids lose their lunchbox, kids lose stuff all the time, so that seems too loose and not direct enough.’ So coming up with the language around, ‘Jess’ leg was unhealthy, and the doctor said it had to be removed.’ So it’s far more literal.

JK: Literal without being gruesome. We didn’t have to say it’s sawed off in the O.R. But at the same time, Patrick’s right, saying you just lost it — that’s even scarier because you feel like it could just fall off one day or something.

PD: Then the second part I think was in Jess’ real life she lost one leg and then a significant period of time passed and then she had to make the decision to amputate the second leg. And we weren’t sure if we should group it all together in one swoop of amputation, or if kids could sit with one big obstacle and then a second. And as we thought about it, one, it’s really how it happened. And two, we think that kids can understand it.

JK: What I personally struggled with is that I’m into being very accurate over anything else. So I had a hard time taking creative license. And also I think being so limited to what words and how many words — this is only 32 pages, for an age group of 5 to 9, to tell the most difficult, challenging, painful, resilient story of my life.

We did have a draft where I started as a bilateral amputee, and then we talked about it and we tried different drafts. It was such a big moment in our life when I had to amputate my second leg, and we really thought that kids and adults could relate to having to go back to the beginning again. Even if it’s not involving something as extreme as losing another limb, there are so many times in life where you think you’ve made it through a challenge and you’ve overcome it and you can celebrate. But then you’re like, ‘Oh my God I’ve got to go back to the beginning, and it’s going to be twice as hard as before.’

The limit of words is really where the talented and amazing illustrator comes in, because Scott Magoon fills in so many words and details with his art. Everything that I think we couldn’t say or get across, he really does with his artwork.

An excerpt of ‘RESCUE AND JESSICA: A LIFE-CHANGING FRIENDSHIP.’ Text copyright © 2018 by Jessica Kensky and Patrick Downes. Illustrations copyright © 2018 by Scott Magoon. Reproduced by permission of the publisher, Candlewick Press, Somerville, MA. —Provided

The illustrations very clearly set Jessica’s story in Boston without mentioning the marathon or the bombings. Can you talk a little about what it means to you to have Boston be the backdrop of this story, and why you chose to keep it very visible in the book?

JK: I think that without having a formal conversation, [Scott Magoon] knew Boston is like a character in the book. I grew up in Northern California, and I have never felt more attached or a greater sense of belonging to any where I’ve ever lived before. So I can’t imagine it not appearing that way. But I also like how gentle it is. If you don’t know Boston or don’t know about the marathon, you can still really enjoy the book and take a lot from it.

How does it feel to have this book be released just ahead of the fifth anniversary of the bombings? What does it mean to you to have this timed when it is?

PD: I think we spend large chunks of every day thinking about some aspect of our lives now. And the anniversaries are certainly emotional for us, and at least I find myself thinking about Sean and Martin and Lingzi and Krystal a lot, more so than usual. But usually it’s a lot of other people who want us to find some way to have some profound reflection or wrap it up somehow or somehow mark that we’re in a new phase. But it doesn’t really work that way. Anniversaries are important symbols of the passage of time, but they’re not always clean transitions from, like, struggling to being OK. So instead of having to articulate all of that at this five-year anniversary, we have something to share that is, for us, like a piece of art that can be interpreted in a lot of different ways and encapsulates all the aspects of our recovery.

I’m really proud of all the work that Jess and I have put in for the last couple years, both individually and as a couple, to get to this point and for all the points thereafter. But I guess I never really know what the anniversary is going to mean until it actually happens. And then it usually feels so emotional that it’s hard to put words to.

At the end of the book, Jessica tells Rescue that he ‘rescued her.’ Can you explain how has he rescued you, individually and together?

JK: The best I can describe it is that when I applied for him, I felt like I was getting a piece of medical equipment. How was he going to help me, what was he going to do, how was he going to fetch things, turn off lights, open doors. And while in some senses he really is and he can help me in those ways, I did not realize emotionally how he was going to help, not just me, but Patrick and our extended group of family and friends.

He rescued us by pulling us out of some of the darkest, most depressing, hopeless moments of our life again and again by doing something goofy or by just his needing to be taken care of and fed and exercised. [It] gave both of us something to focus on, on days when it would have been much easier to just stay in bed. Taking him out for walks in all of these various stages of recovery, not only did it get us off the couch and moving in whatever ways we could, but it got us outside. Watching him run and play and chase and have a good time feels like the closest that we could be to feeling those things again.

So here we were, so immobile, so depressed, feeling very disabled and watching him be so free and light and athletic and agile was like the most beautiful thing that I could have experienced. And I just couldn’t have imagined how powerful that was going to be and how much I was going to need that, in some ways, more than I needed the physical help.