Kimby Maxson And The Bendy Twisty Zebra: The Story Behind The Book

The story of Rose, a young girl zebra, is the heart of Kimby Maxson’s children’s book The Bendy Twisty Zebra. Rose, her friends, and the book’s encouraging message are all based on Kimby’s real-life experiences navigating the world of doctors, hospitals, and diagnoses for her daughter, Jade. Kimby, a massage therapist and bodywork specialist from Eugene, Oregon, spent years exploring the symptoms Jade had been experiencing since birth in hopes of finding an answer. Upon learning about EDS and due to a fortunate connection with an illustrator, Kimby decided to write The Bendy Twisty Zebra–the book she wishes she had when she was learning about EDS with a small child.

Twenty-two years ago, Kimby gave birth to her daughter, Jade. From the moment Jade was born, Kimby knew there was something wrong. “She was throwing up blood; she had teeth ready to come through [she had] extra teeth; her little toes were pointing in pretty dramatically,” Kimby recalled. “It was on day one of her life that we realized we were going to have to do some exploring.”

“We” referred to Kimby, and her then-husband Joe, Jade’s dad. Both Kimby and Joe had their hands full with their newborn. “I had to nurse her twice every single time I fed her because she would throw up the first time,” Kimby explained. She had extra teeth pulled while Kimby and Jade’s babysitter each did an hour of bodywork on Jade’s legs every day. A tinnitus diagnosis came around the age of five.

“We went to separate specialists for everything–the gastric specialist, the ortho specialist, the ear doctor, the eye doctor, the orthopedic surgeons. We went to so many different types of doctors,” Kimby said, echoing a frustration many with EDS have about medical systems. “I can’t begin to count how many doctors appointments I went to with Jade. It’s horrible, as a parent, to watch your child suffer,” she added.

A car accident when Jade was a baby left her with neck issues. Years later, this led to treatment from a doctor near Eugene, who was the first person to mention Ehlers-Danlos Syndrome to Kimby.

“At that point, I was a massage therapist and a midwife. I’d been studying medicine for years and years. I was like, ‘what in the world is that?'” Kimby said. Then, like so many others who eventually found answers in EDS, Kimby started researching and connecting symptoms. She estimates she spent hundreds of hours researching EDS. Most of the information she could find in the early-to-mid 2000s was about hypermobility and dislocating joints, and while Jade’s feet turned in, she didn’t have issues with dislocation or subluxations at the time. “It was a hard connection to make at that point.”

Without that connection, it was challenging for Kimby and Joe to explain to others what was going on with Jade. Jade had broken her arm twice in the same year, her knee had dislocated a few times, and due to proprioception (the body’s notion of where it is in space) being off in people with EDS, Jade was getting injured and developing a lot of bruises. “I told her, ‘we’re going to get a call from Children’s Services one of these days. You tell them the truth.’…We had school counselors [asking], ‘hey, what’s going on at home?’ and without a diagnosis, it was difficult. It was like, ‘well, she has all these things, we don’t know.'”

As they bounced from doctor to doctor, Kimby continued to advocate for Jade and her constellation of seemingly unrelated symptoms. “I had doctors tell me, ‘you’re gonna have to let her grow up.’ ‘You’re going to have to stop carrying her so much.’ ‘She’s fine.’ ‘She just doesn’t want to go to school.’ ‘I think she’s exaggerating.’,” Kimby recalls. “I would say, ‘no, no, she’s not. I know my child. She loves school. She does not want to stay home. She wants to go to school.’ I had to fight for that.”

Even when Jade received a diagnosis of Ehlers-Danlos Syndrome around age 12, the hardships Kimby faced weren’t over. Kimby made sure Jade got a 504 plan for her accommodation needs at school. “We had to be very close to her counselors and administrators at her school because they just couldn’t understand why she was always injured,” Kimby explained. One of the major accommodations Jade needed was to be waived from physical education (PE) class. “I fought to get her out of PE. I said that she goes to physical therapy, that’s going to be her physical education because the physical therapist understands this. Her school counselor went to bat with me for that,” Kimby explained. Kimby would also come to school during the day to help Jade when her ribs or hip dislocated.

A lot of inspiration for The Bendy Twisty Zebra came from Jade’s support system during her high school years. Snail and Quail, two of the characters in the book, are based on two of Jade’s friends. “They’ve stood by her when she’s had a rough day, and they’re fabulous. They’ve defended her when she’s needed it from other kids who weren’t as kind.” Bear is also based on another real person–Jade’s boyfriend, now fiancé. Kimby explained to Bear that he would need to learn how to adjust Jade’s hips and ribs if they were going to be spending a lot of time together. “He doesn’t throw her up in the air [like he does in the book illustration], but he did immediately learn to take care of putting her joints back in place when they popped out,” Kimby said.

When asked what, other than her daughter’s experience, inspired her to write The Bendy Twisty Zebra, Kimby said, “I’ve always written a little. [Writing a children’s book] has always been something I’ve wanted to do.” However, as most writers soon discover, making a living from writing isn’t possible most of the time. Kimby still kept the idea on the back burner. It wasn’t until she met Ron Houchens, the book’s illustrator, that making her dream a reality seemed possible.

“We met on a dating site,” Kimby said with a laugh. “Super cliché, I know.” (I reassured her that it wasn’t at all–that’s how I met my husband!) On their first date, Kimby learned Ron was not only an amazing illustrator but also a painter, a tattoo artist, and a muralist. She told him that she had always wanted to write children’s books, and he said he had always wanted to illustrate children’s books. “I was like, Oh my God, there is it!” Kimby exclaimed. “Meeting Ron and having an illustrator was what made me bring [the book] to life when I did.”

Another reason Kimby decided to write this book is that it’s a book she wishes she had had when Jade was younger. “Almost as soon as we got the diagnosis, I wrote a list on a notebook sheet of all the symptoms [of EDS], and little check marks by the [ones that Jade had]. Every single one of her symptoms I could bring back to EDS. If someone had handed me that piece of paper when she was two, it would have probably saved us so many years of questions and grief and thinking we were doing something wrong.” Many people, including the author of this article, agree that a book like this would have made the years of confusion and loneliness a bit easier.

When Kimby first drafted the book, she included Ehlers-Danlos Syndrome in the text of the book as Rose’s diagnosis. When a friend of Kimby’s–who has Lyme disease and fibromyalgia–edited the book, she mentioned how the story and message applied to her and her conditions as well. It was then that Kimby decided to take mentions of EDS out of the story and add some brief information about it in the introduction to the book. “Maybe it’s still about EDS, but it can also apply to other folks. It’s about how to be supportive and how to help other people rise up when they’re not doing well. It says in the book that together we’ll be okay, and that’s the message I wanted to send,” Kimby explained.

Though the book is aimed at children, grown-ups and parents can benefit from its message too, as well as Kimby’s experiences with the medical world and EDS. Her advice? Keep pushing, even if the doctors don’t believe you. “If you know there’s something going on with your kid, and some doctor or some friend or some grandparent or someone says that there’s not, stick with your gut and follow through with that. If I would have given up on that, we would not have had an answer,” she said. “I knew there was something up; there was something happening. I knew my kid wasn’t faking it. Kids don’t want to sit at home and be sick. They want to live rich, full lives. Pursuing answers and not losing hope that you can find the answers as to what’s going on with your kid [is the best advice I have].”

She also encourages patients to seek out alternative therapies. “Touch–appropriate touch–can be so healing,” Kimby stated. She understands that sometimes people don’t want to be touched due to various conditions, including pain. Modalities, like massage, lymphatic drainage, and other types of bodywork, can be a source of comfort and strength. “Just make sure you find a provider who understands EDS!” she added. “A lot of hypermobile clients come to see me because they know I’m familiar with it. I’m not going to hurt them. I’m not going to overdo it.” 

When asked about plans for future books, Kimby excitedly shared the list she and Ron have developed. All are books for children, helping them grow and understand the world around them. Currently in the works is a book based on her granddaughter. The main character is a scaredy cat, afraid of everything, who learns not to be quite so scared. Ron’s son (Kimby’s stepson) wears hearing aids, and they thought a book normalizing hearing aids and other medical devices would be a good idea. The last idea Kimby shared was a book about ADHD. “I have a chicken named Dolly–I have a lot of chickens, but I have one named Dolly, and she’s going to be a great main character for that one,” Kimby shared.

Right now, The Bendy Twisty Zebra has given Kimby and Ron a lot of joy. “I just want to get the book into the hands of as many people as possible,” Kimby said. “It’s not a money-making thing. I want people to have the support they need. And I hope kids love it. My granddaughter’s copy is beaten up from being read so much, but that might be because her grandma wrote it,” Kimby added with a laugh.


Anyone interested in contacting Kimby can do so at her email kimbymaxson[at] or visit her at her website to learn more about her bodywork services. The Bendy Twisty Zebra can be purchased at Amazon,, and other independent bookstores*.


[FYI–these aren’t affiliate links, which means we don’t earn any money from you clicking on them. We want to show you where you can find products we enjoy–and we think you will too!]


Kate Schultz

April 2023

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