My Life Became A Middle Grade Novel, a guest post by Amie Specht as told to Shannon Hitchcock

Kate Lovejoy, the main character of our novel, Dancing In the Storm, has a rare genetic disorder called Fibrodsyplasia Ossificans Progressiva.

You’ve probably never heard of it, but I have the same disorder. My body grows extra bone, a second skeleton that makes everyday tasks like walking, even getting dressed by myself, nearly impossible.

Kate lives in Baton Rouge, Louisiana.

I grew up in Baton Rouge, and some of my favorite memories like crawfish boils and hot beignets make their way into the book. I always enjoy visiting new places through the novels I listen to and hope young readers will enjoy getting to know Louisiana.

Before her diagnosis, Kate is a gymnast.

I took gymnastic lessons as a child, but by the time I was old enough to compete, I had become too disabled. In the book, I wanted Kate to experience something I never had the chance to do. I still love watching gymnastics on TV, especially the Olympics, and I was the manager of my high school’s gymnastics team.

Kate visits multiple doctors to get a diagnosis.

Because FOP is so rare, (only 900 known cases in the world), most doctors have never encountered it. It took months of medical appointments, X-rays, and radiation bone scans to confirm my diagnosis.

Like Kate, I have a special relationship with Dr. Fred Kaplan at the University of Pennsylvania School of Medicine and our book is dedicated to him. For Dr. Frederick S. Kaplan, who has devoted his life to unraveling the mysteries of FOP, and for all those affected by it—past, present, and future.

Charlie, (Kate’s dog), makes her life better.

I have two dogs and two cats. I am a huge animal lover and would have even more if I could.

Kate reads a book called Being Heumann: An Unrepentant Memoir of a Disability Rights Activist by Judith Heumann and Kristen Joiner.

When I was growing up, I never read a book about a person living with a disability. If I had, it would have meant the world to me. I do remember watching a deaf girl compete in a beauty pageant, and I was so excited when she won. It made me feel that young women could be both disabled and beautiful.

Like Judith Heumann, I have a co-author. Being disabled often means asking for help.

After a flare-up caused by the flu, Kate loses the ability to bend her arm.

The same thing happened to me. I have lost so much mobility that I can’t hold a book in my hands anymore.  That’s why I was so excited to learn that Dancing In The Storm would also be available as an audio book.

A therapist helps Kate deal with her FOP diagnosis.

I have also seen a therapist. That’s one of the messages in our book–there is no stigma in asking for help when you need it.

Kate’s life is made easier by tools like a dressing stick and a long-handled fork.

Having a chronic disability often means learning to do things differently. I use a back scratcher to help me type, and for makeup, I tape my brushes to skewers to be able to reach my face.

Some of her friends treat Kate differently after her diagnosis.

Sometimes it feels like I’m invisible. People see my wheelchair and don’t look beyond it. That’s one of the reasons I love video games. The people I play with on-line get to know me before they see me. I hope Dancing In The Storm sparks classroom conversations about how to treat friends who have disabilities.

Kate is a happy person who doesn’t let her disability define her.

Despite my physical challenges, I’ve always been a relatively happy person. My motto is: “I’m not handicapped; I’m handicapable!” In the last chapter of our book, Kate writes a poem that is the secret to her living a happy life going forward. The key is to focus on the things she can still do, rather than the things she can’t.

I Can

I can watch the sunrise.

I can smell bacon cooking.

I can eat pancakes and eggs.

I can study the earth, and moon, and stars.

I can imagine castles, and dungeons, and dragons.

I can follow recipes and bake cookies.

I can get slobbery kisses from my dog.

I can be a math tutor.

I can sing along to musicals.

I can dance with Izaak.

I can write a speech.

I can speak before a crowd.

I can raise money for research.

I can ask my friends for help.

Meet the authors

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 own story.

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. Visit www.shannonhitchcock.com for more information.

About Dancing in the Storm

In the tradition of Out of My Mind and Rules, and inspired by the co-author’s own life, this is a heartfelt, candid, and illuminating story of a girl learning to live fully with a rare genetic disorder.

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.

ISBN-13: 9780593619469
Publisher: Penguin Young Readers Group
Publication date: 02/06/2024
Age Range: 8 – 12 Years

Filed under: Guest Post