Welcome to the Mixed-Up Files, Amie and Shannon. We’re thrilled to have you here. Congrats on the launch of Dancing in the Storm. It’s so inspiring and powerful. I had never heard of Fibrodysplasia Ossificans Progressiva (FOP) before. I learned so much about it…and especially how it can drastically change a person’s life as Kate experienced it. She’s one of the strongest protagonists I’ve ever met. I know she’ll inspire so many people.
Huge congrats for being named a Junior Library Guild book! I’m sure there will be many other wonderful awards and lists coming your way. 🙂
What were the perks and challenges of co-writing Dancing in the Storm together?
Amie: The perk for me was working with someone who had previous experience writing books, and who could guide me about making our book better. The most challenging part was finding time to work together. We started right before Covid hit so almost all our communication was done over text, phone, or email.
Shannon: The perk for me is that I wasn’t starting with a blank slate– the characters and the story are heavily influenced by Amie’s life. As for the challenges, it’s a little slower to work with a co-author because two people weigh in on every sentence.
What surprised you the most while writing this book?
Amie: How much goes into writing a book. Shannon was very helpful through the process though.
Shannon: Amie’s positive outlook on life. I have far fewer physical challenges, but can be a lot grumpier. There’s a life lesson there, I’m sure.
Yes! Amie is so inspiring. I love her positive outlook, which reflects in Kate’s character.
I love how Kate has so many interests besides gymnastics, like baking with Mindy. I could imagine how much harder this would’ve been without her love of space, Broadway musicals, etc. What parts of this book relate the closest to your life, Amie—and what were made up or tweaked the most?
Amie: The biggest tweak is FOP showed up for me when I was 4 ½, not 12. I was already in gymnastics, but that is not what caused FOP to present itself. With that said, there are things in the book that happened when I was 16/17 years old, like managing the gymnastics team. We also didn’t add everything I was involved in, but tried to incorporate a lot of it.
Is there anything you wish you could go back and tell your younger self, Amie?
Amie: Oh man! There is a lot. The biggest would be to listen when my parents told me not to do something. I didn’t care about my limitations. I climbed trees and rode kid four wheelers. I remember one day when we lived in New Jersey, we had ice on our driveway. My mom said we could go out, but that I was supposed to stay in the garage due to ice. Not ten minutes later, my brother had to get help because I had slipped on the ice and hurt my leg.
Aw, I’m sorry that happened. (((Hugs)))
I love how your book shows people they aren’t alone…and that becoming friends with someone in a similar situation can be helpful. But it also shows ways to feel less alone with people who aren’t disabled. And how to use meditation to stay as strong as possible. What do you think can help people the most, especially soon after a diagnosis or flare up?
Amie: I am all for seeing a therapist when big changes happen, and I have had to when certain flare ups changed me a lot. Also, know it’s ok to be upset and scared, but accept the change and figure out what needs to be done to get to your new normal.
I love the way you phrased that—the new normal. Looking at the future vs. mourning the past sounds like it could help people facing all kinds of situations and disabilities.
Kate’s entire world feels like it changes in an instant…yet no matter how sad or shocked she is, her positive side always shines through. She’s so inspiring! Was it easy to write the book that way? What tips do you have for staying positive during tough times?
Amie: I’ve just always been a pretty happy person. I have my moments too, but I try to find something funny about the situation and that usually brightens my spirits.
Shannon: It was easy to write the book that way because that’s the way Amie portrays herself. Her positivity was evident in every interaction I’ve had with her.
When Kate first shared her diagnosis and how it would change her life, things were awkward with friends. What can people do to help a friend through a time like this?
Amie: If a friend is going through a tough time in their life, figure out ways to include them in normal activities. I’ve had moments in my life when FOP caused drastic changes, and I was embarrassed about it, or worried about how I would look. That’s when my friends made me feel less alone. A good example is the chapter in Dancing In The Storm when Kate and her friends eat popcorn with forks–that actually happened to me.
I love that scene so much! I’m so glad your friends joined you eating popcorn with forks. 😊
What are some of your favorite middle-grade novels—and why do you love them so much?
Shannon: Blood Brothers by Rob Sanders, The War that Saved My Life by Kimberly Brubaker Bradley, The Mighty Heart of Sunny St. James by Ashley Herring Blake, Ms. Bixby’s Last Day by John David Anderson, The Red Umbrella by Christina Diaz Gonzalez, Amal Unbound by Aisha Saeed, The Red Pencil by Andrea Davis Pinkney, Glory Be by Augusta Scattergood, and Escape From Aleppo by N.H. Senzai.
I love realistic fiction that features protagonists with big hearts. Bonus points if it’s historical fiction!
I see a few books I love and others to add to my must-read list. Thank you for sharing, Shannon.
Can you share a writing exercise?
Shannon: I had met Amie, (my co-author), but we didn’t know each other very well, and yet we had decided to write a novel together. The novel would be inspired by Amie’s life growing up with Fibrodysplasia Ossificans Progressiva, one of the rarest genetic disorders in the world. We started by completing this character workshop together. It’s a great tool for collaborators who are developing characters together, but also for any author writing fiction. Give it a try!
Is there anything else you’d like us to know about FOP? I was thrilled to see there’s finally a treatment available! What can we do to help support those with FOP?
Amie: Yes! The treatment is very new and countries are still working on getting it approved. FOP is a genetic disease and responds to any sort of trauma to the body. The biggest indicator of FOP is our toes, (big toes are short and curved inward), which is noticeable at birth. If more doctors and nurses knew about this, we could diagnose kids at a younger age and possibly prevent them from some of the trauma (like intramuscular immunizations).
To help support FOP, a person can go to www.IFOPA.org and donate to their research efforts. We have come so far and hopefully more treatments will start becoming available as well!
Thank you for sharing, Amie. I hope this amazing book will help make many more people, including doctors, aware of FOP and how to notice it earlier to help protect kids.
Now that your incredible book is out in the world…what’s next for each of you?
Amie: Dancing In the Storm has given me a platform to spread the word about FOP. Though my condition makes travel difficult, look for me on more interviews such as this one, and I’m working on a Pinterest board. For fun, I stream on the Twitch platform. Last year was rough, but this year I plan to be back. I stream a variety of video games.
Shannon: I have a picture book biography, Of Words and Water: The Story of Wilma Dykeman, Writer, Historian, Environmentalist forthcoming April 16, 2024, and I’m hard at work revising another middle grade that features a protagonist with a big heart!
That all sounds wonderful. I can’t wait to read more interviews and see future books from you both.
Thank you again for visiting the Mixed-Up Files. I love your inspiring book…and can’t wait for our readers to discover it. Thank you also for your generous giveaway!
Enter the Rafflecopter below for a chance to win a copy of Dancing in the Storm (US only). The winner will be announced on this post and contacted via e-mail on February 13. Good luck!
Kate’s life in Baton Rouge, full of friends and family, gymnastics and Girl Scouts, is just plain great. But then, at the age of twelve, she suddenly develops a mysterious shoulder pain that won’t go away . . . and that will change her life forever. It turns out that Kate has one of the rarest genetic disorders in the world, Fibrodysplasia Ossificans Progressiva. FOP causes bone to form in places in the body where it shouldn’t, and there’s no cure yet. Kate will need to learn how to live with this difficult new reality, helped by those close to her and by a new pen pal named Amie, who has been living with FOP for years.
Drawing upon much of Amie Specht’s own experiences with FOP, she and esteemed novelist Shannon Hitchcock have created a poignant, eye-opening, and uplifting story of finding courage and joy in the face of adversity.
Amie Darnell Specht worked in tech support for a large computer company for many years. She and her husband live in North Carolina with lots of pets. She has Fibrodysplasia Ossificans Progressiva (FOP), and this, her first novel, is heavily influenced by her story. Follow her on Twitter, Twitch, and Pinterest!
Shannon Hitchcock was born and still lives in North Carolina and grew up in the foothills of the Blue Ridge Mountains. She is the author of four previous acclaimed novels for children, including Flying Over Water and Ruby Lee & Me. In addition, Shannon is the author of four picture book biographies, with the latest, Of Words and Water: The Story of Wilma Dykeman, Writer, Historian, Environmentalist, coming on April 16, 2024. Follow Shannon on Twitter and Instagram.
Some additional photos I think you’ll enjoy. 🙂