Disability

These Boston Marathon Bombing Survivors (And Their Dog) Wrote A Book To Teach Kids About Disability

Inspired by the four-legged friend who helped turn their life around, amputees Jessica Kensky and Patrick Downes are sparking a conversation about disability.

Collaborating on a book under the best of circumstances is not always easy. Now imagine that you are Jessica Kensky and Patrick Downes, first-time authors and husband-and-wife survivors of the 2013 Boston Marathon bombing, and you’re drawing on your own experiences to write a picture book for children about a girl who has her legs amputated but finds solace from a specially trained service dog named Rescue.

Kensky, 37, and Downes, 35, don’t have to imagine it. They lived through that apocalyptic ordeal, lost limbs, endured tortuous therapy, and managed to write Rescue & Jessica: A Life-Changing Friendship (Candlewick Press), a truthful but sensitive story that offers hope and, more importantly, gives kids a way to talk about what it’s like to be “disabled.” Kensky and Downes spoke to us from their home in Cambridge, Massachusetts, along with Rescue, their six-year-old black Labrador and the real star of their in-person book signings and readings.

Jessica Kensky, Patrick Downes, and their service dog, Rescue.

You didn’t set out to write a book until a friend and children’s book agent suggested it. What convinced you?

PD: We noticed early on that when we started going out in public in wheelchairs, with crutches and with our prosthetics—

JK: —and without our prosthetics.

“We realized that by engaging kids in this conversation, we were demystifying
what it means to be a person with a disability.”

PD: —and without our prosthetics and with Rescue, kids would see us and work really hard to figure out what they were seeing. We’d invite them to come over and investigate our wheelchair and our prosthetics. They’d start asking questions about how our legs work and how we got around and what Rescue could do for us. Once they started to touch our different medical equipment and pet Rescue, they became more fascinated. We realized that by engaging kids in this conversation, we were demystifying what it means to be a person with a disability.

What was it like collaborating on this project?

JK: It was really fun. If it wasn’t, we never would have worked on it because we did the bulk of the work while we were at Walter Reed and I was having a lot of surgeries. I ended up losing another limb. I was so sad and so depressed and so hopeless that I wasn’t able to do normal life things, but this was always a fun, therapeutic thing to work on. I think our marriage works in a way that the book works in that we bring very different things to the table. I’m very literal and want to be very accurate and educational, and Patrick was going to be a little more playful.

Rescue being “interviewed” about the book he inspired.

Can you give me an example?

JK: We decided not to use the word “amputate” because we thought that was not going to be a word that a lot of kids might understand. Patrick’s training helped in how to be honest and age-appropriate, so we landed on something like: “In order to be healthy again, Jessica’s leg had to be removed.” I wrote a line about myself that I was so nice and so pretty, which kids always laugh at.

What was the hardest part to write?

JK: Deciding what was accurate and what was not necessary for the story. It was hard to narrow the scope about what parts should be included and also where to start the story. I think the book ended up being a lot better by having the character lose her second leg the way that she did because it’s this huge setback in the book. I think a lot of times in life as a child and an adult, you think you’ve made it through something and then you realize you have to go all the way back to the beginning. It’s an extreme example, but it’s something that a lot of people and children can relate to.

Did anything surprise you during the writing process?

JK: The process was really organic and really natural. Even though it was kind of about what happened to us, it felt lighter and it was a departure from the everyday grind of our recovery. I think that’s what was so surprising about it: how fun and therapeutic it was.

PD: Reminding ourselves that we could use our professional, educational training to tell a complicated story for the greater good, to really highlight certain scenes that we’ve encountered but use it in a way that could be educational and empowering to others. It brought us to tears regularly to see how young kids have taken to it.

“For me, kids have never once asked me something that made me sad or upset me in any way. Adults ask questions that can be piercingly painful.”

Is there a question you get tired of answering?

JK: For me, kids have never once asked me something that made me sad or upset me in any way. Adults ask questions that can be piercingly painful, [such as]: if we’re having children—which is a personal question in general. It always amazes me that people feel entitled to ask me that. Or they’ll also ask in an elevator, riding two flights up with them: what happened to your leg? Maybe I’m having one minute that day when I’m not thinking about it and I don’t really want to share with a stranger the worst day of my life. But I could be in that same elevator ride and in that same mood and have a kid ask me if I was part robot and it always makes me laugh.

PD: Because our story of injury and recovery has been so public, people feel in some cases entitled to ask questions well beyond what you would normally ask someone, that social norms don’t apply.

It’s been almost a year since you returned home from Walter Reed. What can you tell me about your recovery?   

JK: I think we recently hit a new phase of recovery that eluded us for a long time. Patrick and I find ourselves struggling and working on this idea of reintegration. Both of us thought it was going to be easier and quicker. It’s this weird time when you’re in the thick of it. You’re daydreaming about the time when you’re healthy enough to move back home and do things again like school and work and travel, yet you’re in it and it’s really hard. Life looks very different than we ever imagined. That gets kind of confusing.

And health wise?

JK: We’re what’s called community ambulators. Most days, we both wear our prosthetics for most of the day. We still use wheelchairs at night and in the morning and whenever one of us is having a bad day or an issue with a prosthetic. For the most part, we’re able to stand, walk in the grocery store, run errands, go to schools and things. Again, it’s a relatively new phase. I’ve only been walking consistently with two prosthetics for about a year. We’re in this kind of—I don’t know—recalibration. It’s hard to describe.

What role does Rescue play?  

JK: When I got him, I was very focused that he’s going to help me navigate this new life. He can turn off lights, open certain doors, bring me my phone, pick things up off the floor. What I didn’t think about was how he brought lightness and laughter back in. Pets have a way of being in the moment and keeping you in the moment.

The cover of “Rescue & Jessica.”

Give me an example.

JK: Patrick and I will be having a really intense or serious conversation and he’ll start snoring and it makes us laugh. I bring him to class with me and we’ll be having a really boring lecture and you’ll hear him let out this big huge sigh. There were times when Patrick and I were so distraught and so exhausted, we had no words left to say to each other, but we would always go out and throw a ball for Rescue. I think it was our way to meditate and to watch this beautiful animal be so coordinated and athletic and effortless at a time when we were in so much pain and couldn’t get around and really felt the opposite of all those things.

“I think a lot of times in life as a child and an adult, you think you’ve made it
through something and then you realize you have to go all the way back to the beginning.”

Any thoughts for someone who might be coping with a similar life-changing event?

PD: The most important ingredient of any recovery, of resiliency, is having some kind of companionship and community. You can tell people to suck it up or be tenacious, never give up—but you need good people surrounding you to encourage you, to pick you up, to just be sad with you, to distract you. That is really the key to moving on and moving through and still finding meaning in life.

JK: When I lost one leg, I literally said to my dad at the time: over my dead body will they take my other leg. Then years later, there I was advocating for myself to have a second amputation. So, just not to overestimate yourself and what you can overcome, what you can get used to, what you can adapt to. These cliched things are so true. The one about: You don’t know how strong you are until you have to be. If someone told me: could you get through this situation?  I’d say absolutely never. I loved my legs, I loved running—all these things either I can’t do now or they’re different or they’re very challenging. I never thought I could have some love and life and quality of life like this.

You might also like...
Giving Mexico New Wheels and Limbs
John Brownlee