By: Kimby Maxson
Moms are relentless when it comes to their children's health. As a recent patient said to me, "Angry moms are what change the world!"
A fierce advocate for her daughter, Kimby Maxson recently published an inspiring, fun storybook for children and adults facing joint hypermobility and associated conditions. She shares how and why she wrote this beautiful book. Enjoy!
-Linda Bluestein, MD
In the summer of 2000 my teething, vomiting little baby girl came shrieking into the world with skin like a porcelain doll and feet that pointed towards each other. Her dad's feet turned in sometimes too despite the fact that he had worn leg braces when he was a child—which he said was torture, so we decided that we would straighten her legs some other way. That other way would turn out to be hundreds of hours of physical therapy and massage, and letting her walk barefoot to strengthen her muscles wherever and whenever we could. She had flat dirty feet for the first several years of her life and parents who followed her around reminding her to “walk straight and point her feet forward”.
I was a massage therapist and massaged her daily. The babysitter, her dad, her sister and my mom massaged her little legs and hips also. In a couple of years her legs corrected well but femoral anteversion (inward twisting of the thigh bone) was just one of the concerns. My baby threw up constantly. And not just a little bit, she threw up a lot. She is the only person I have ever seen projectile vomit on a regular basis. We did food allergy tests, elimination diets, HIDA scans, celiac and SIBO tests, brain scans and blood tests galore. The doctor said “She has terrible reflux but there’s no reason that we can find.” We cut out cheese and gluten and fed her small portions, room temperature water and did not let her lay down after eating. It was all just band-aids, nothing helped much.
She had migraines so we ruled out brain tumors. She had teeth at three months and grew too many so she had to have several pulled and ultimately braces later on. As she grew she preferred to be carried because “her legs hurt”. When she was five she said “What is that ringing sound that’s always happening?” That’s when I discovered she had constant tinnitus. She later was diagnosed with some hearing loss.
Over the years we saw Pediatricians, Gastrologists, Neurologists, Naturopaths, Orthopedic surgeons, Accupuncturists, ENT’s, Audiologists. We went to Shriners Hospital and Dornbecker’s Children’s Hospital in Portland and so many more. I showed up with lists of symptoms and food and triggers and timelines. Most doctors sent us on to someone else. One doctor said she “Just wanted attention.” We never went back to her again. Our daughter was our little mystery until in grade school her knee dislocated once, then twice, then a third time.
It was our chiropractor who suggested Ehlers-Danlos Syndrome (EDS). Once I started putting the pieces together the picture became clear. We went back to our orthopedist at the children’s hospital who agreed but said “There’s not a whole lot we can do about that condition.” In the coming years we saw more specialists. One for the torn labrum in her hip, one for the hearing loss, one for the tremors, one for two fractured arms, one for the PANDAS that followed strep throat several times. PANDAS is short for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections. We saw a lot of doctors who had no idea what to do with my little zebra so just like with her baby legs, we did the best we could on our own.
More joints started subluxing (partial dislocation) and dislocating. The most common joints were her hips, ribs, thumbs, ankles and her shoulder. In middle and high school she called me more times than I could ever count to have me rush to the school to pop her ribs or hip back in place. We had special silver thumb supports made and she kept knee braces and crutches at school for days she needed them. I spent years worried about my daughter, losing sleep, feeling sad and frustrated that I couldn’t help her more, by finding answers or easing her discomfort. I still am never far from my phone. She knows if she calls three times I’ll stop whatever I’m doing and answer.
Despite all of this, she works hard, laughs easily, and at 22 she is a college graduate who works at the university. She has a fiancé, great friends, and a rich, full life. She still struggles and lives in a body that is painful and tired more often than she would like. While I can’t speak for her, I do know that she still feels frustration for the simple fact that she has these struggles but ever more so that so few people understand.
I watched her navigate these challenges like a champion to get where she is now. To honor that, and provide other zebra parents with a tool I wish we had when she was small, I wrote a children’s book about EDS. Maybe it’s more about acceptance, friendship, and support. Maybe it’s not even really a children’s book. I wrote it, though, in hopes that a zebra kiddo somewhere might feel less isolated and a zebra parent somewhere might put the puzzle pieces together the way I finally did. It’s called the Bendy Twisty Zebra and it’s so much more than a kid’s book to me. It’s my way of taking those years of fear, confusion and frustration and turning those emotions into something else. Something beautiful. The Bendy Twisty Zebra both receives and provides love, patience, understanding and support. She gives what we all should give to others and receives what we all deserve.
We all find our own way to navigate difficulties. It’s not easy watching someone you love suffer, as a parent it was heartbreaking. Things have changed since my daughter was born. EDS isn’t quite the mystery it was. Thankfully there is more awareness and more coping tactics. Practitioners of all kinds are learning about the multitude of symptoms associated with hypermobility and exploring ways to make it more comfortable to live in these stretchy bodies. Hopefully one day soon when parents bring their babies to doctors with lists of strange, seemingly unassociated symptoms more and more doctors will immediately see the zebra. Until then we all need to keep spreading awareness and loving and supporting each other in the best ways possible… and I will keep writing books in the hopes that my experiences might make someone's life a little easier.
Kimby Maxson is a full-time massage therapist specializing in lymphatic therapy, women's health and hypermobility. She lives in Eugene Oregon with her artist/illustrator husband, some dogs, cats, chickens and a horse. When she’s not helping people live more comfortably in their bodies or teaching workshops she is writing, spending time with her family, traveling or enjoying the outdoors.
or check out her website.