Jessica Kensky was recovering from injuries she suffered during the Boston Marathon bombing when someone brought a picture book about disability to her hospital room. “It had a bear family, and the dad had an amputation,” Kensky recalled. “It was very weird, and the dad was wearing roller skates. I remember thinking, ‘This is so confusing. This is so inaccurate.’ ”
Kensky and her husband Patrick Downes were at the finish line during the bombing on April 13, 2013, and both suffered serious injuries that required years of recovery. Kensky underwent amputations on both of her legs. Downes lost his left leg below the knee. Five years later, they are poised to publish their own illustrated children’s book, Rescue and Jessica (Candlewick, Apr.), and tell a story of disability that reaches a generation of young readers in a new way.
Their story follows a 14-year-old girl whose experiences are drawn from their own. The most important of these is the character’s relationship with a service dog, Rescue, whose friendship and assistance help the girl overcome some of her most significant challenges after she loses both of her legs.
For Kensky, the arrival of a service dog provided by the nonprofit organization NEADS gave her a partner in recovery, and transformed the couple’s lives. During a dinner with their friend, book agent Clelia Gore, they described the tale of how they got Rescue, and told funny stories about traveling with him. After listening and laughing, Gore suggested that they write a children’s book about their experience.
Up to that point, the couple had resisted writing about their experience because they did not want to recount the bombing. “While the split second that the bombs went off altered our bodies, all the moments that followed were far more significant in terms of all the relationships that those moments brought us,” Downes said. “It just felt like that story is so much more deserving than an instance of hate that doesn’t need any more attention. In society we [already] focus too much on that.”
For Downes, who is a child psychologist, and Kensky, an oncology nurse, the opportunity to write a children’s book was vastly more appealing. The two had noticed how Rescue often acted as a beacon for children, who were curious about their prosthetics and disabilities, but hesitant to ask questions. Seeing the dog, children were often less inhibited and, Kensky said, they asked great questions that, “always came from a place of purity and curiosity.”
The couple aimed to replicate that experience through the book. “We wanted kids to have the opportunity to stare and sit with it and ask questions and imagine the engineering aspects of it, imagine the emotion of it, and imagine the physical grit of recovery,” Downes said, “because while we realize our story is unique in a lot of ways, those themes are true for children in all stages of their development.”
A Collaboration and a Shared Experience
As they began writing they made their first big choices. They decided to make Jessica’s character a teenager, and they also agreed to make no mention of the bombing. Instead the story begins after an unnamed incident and follows Jessica’s path to her service dog and recovery. With Gore acting as their agent, the manuscript soon found a home at Somerville, Mass.-based Candlewick Press. At Candlewick, the text went to editor Katie Cunningham while the task of developing the illustrations went to art director Ann Stott, and ultimately, artist Scott Magoon.
Magoon was sitting in his home studio when he received a call from Stott, asking him to create draft illustrations for the book. Magoon, a former Candlewick employee-turned-children’s illustrator, had also witnessed the bombing firsthand with his family from the finish line. Until then, he had been reluctant to discuss his own experience of the bombing, given the physical violence that others endured and he and his family had not. “I thought, finally, here’s something I can do that’s not drawing a ton of attention to myself, that’s supporting others who’ve been through some horrific experiences, and bringing my talents to bear in a way that will serve the story best.”
At first, Kensky and Downes were somewhat circumspect about Magoon’s ability to represent what they envisioned. They joked that that he might have to move in with them and live in their house with Rescue in his bed under their stairs. “Being an amputee is a little bit of an unusual disability,” said Kensky, “because through one day I’ll use a walker, wheelchair, crutches, and a prosthetic.” Moreover, striking the right visual balance seemed as though it would be emotionally tricky. “I didn’t want it graphic, but I did want it honest,” Kensky said.
When they received Magoon’s first drawings, their worries disappeared. “Some of them were so accurate they felt like Scott was with me the day I first put my prosthetic down at Spaulding Hospital,” Kensky said.
To capture the experience, Magoon conducted extensive research about amputees and prosthetics. He worked to develop an artistic style that would accurately represent both, without being so specific that it might become dated as medical treatments and devices change in the future.
Magoon’s depiction of the experience of amputees “comes through so profoundly for us,” Downes said, “and I think it’s so important for kids, because if the purpose of this book is to be honest about the difficulties that Jessica and Rescue encounter, then it’s also important that we do that with the illustrations, and that we’re not giving some cartoony idea of what it means to be a person with a disability.”
Crossing the Finish Line
While Magoon studied images of disability, Kensky and Downes worked to ensure that the story itself was something that curious children would be able to understand. They quickly discovered that certain terms used to describe disabilities were not effective.
“Colloquially we might say to someone, ‘I lost my leg,’ but when we actually wrote that and read it back we realized how confusing that could be for a kid because we’re using figurative language as opposed to literal,” said Downes. “Kids lose things all the time, like lunchboxes and t-shirts and whatever. It was too casual of a way to depict it.” Instead, they wrote that the doctor said that the leg was unhealthy.
The entire process of working on the book involved unusually close collaboration, said Cunningham, who was also at the 2013 Boston Marathon, about a mile from the finish line. “Making a book, there’s always a conversation between the authors and the illustrators, but that is a mediated conversation that takes place via the art director and the editor,” she said. “For this book, because it was so personal for everyone involved, we decided to get everyone in the room as early and often as possible.”
The result is a book that will be ready in time for this year’s marathon on April 16, which marks the fifth anniversary of the bombing. Magoon is running in support of NEADS, and Candlewick is working to raise awareness about the nonprofit in conjunction with the book release. Downes will be at Magoon’s side, handcycling the event, which he also did the year after the bombing with Kensky. Kensky will be at the finish line. As they prepare, they have been joined by a regular running crew of Candlewick staffers.
For Kensky and Downes, the entire process of writing the book has been transformational. “To do something so unexpected made me feel like a little kid,” said Kensky.
They also see it as something of a watershed story for depicting people with disabilities in children’s literature. Versions are also forthcoming in audio and Braille formats. “I hope this sets people up to have a conversation about disability,” said Downes.
More than anything, though, they are eager to go out and meet young readers. After the marathon, the couple will hit the road with Rescue, who has a paw-print stamp for signing books. “It’s a kids’ book and we’re going to schools and libraries,” said Kensky. “I cannot wait.”
