Dancing in the Storm

Auteur

Amie Darnell Specht works in tech support for a large computer company. She and her husband live in North Carolina with their many pets. She has Fibrodysplasia Ossificans Progressiva (FOP), one of the rarest genetic disorders in the world, 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 middle-grade novels, and her acclaimed books have been featured on many state award lists.

Résumé
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.

Échantillon de lecture
A Jumping Bean

I wanted to be a champion.
At gymnastics competitions, floor was my favorite event—a chance to dance and tumble to music. This time my parents and my brother, Chris, were in the stands, and my grandparents were watching too. They had planned their visit from West Virginia to Baton Rouge around my meet. I wanted to make them proud, especially Grandma. When I was seven and she first saw me somersaulting on Chris’s trampoline, she’d said, “Sign Kate up for gymnastics. She reminds me of Mary Lou Retton—a regular jumping bean.” Mary Lou had competed a long time ago, but since she grew up in West Virginia, she’s a hometown hero.
I saluted the judges, blocking out the girls who were competing at the same time on vault, bars, and beam.
When the music started, a burst of adrenaline shot through me. I dropped to my knees, then sprang up and danced across the floor. I took off running and vaulted into a roundoff, back handspring, back layout.
Hamming it up, I snapped my fingers to the theme fromThe Addams Family. My confidence soared as people in the crowd snapped their fingers too.
I strutted and posed, completed an aerial and another tumbling pass. Spinning around, I danced across the floor for my grand finale. I picked up speed, jumped into a front tuck, and stepped out into a front handspring. A big smile spread across my face as I chasséd into my final pose.
The music stopped and I raised my arms to salute the judges. My teammates cheered, but Grandpa was louder. “Way to go, Bean! Mary Lou’s got nothing on you!”
The gymnast who performed after me stepped out of bounds—an automatic deduction. Three more girls competed after her. I imagined my picture hanging beside the one of Mary Lou in Frank’s Place, a restaurant near my grandparents’ house.
“They’re posting final results,” Coach whispered.
My teeth and fists clenched.
I . . . I couldn’t believe it!
Coach B. pounced on me like a cat. “You did it! Congratulations, Kate. You took the gold!”
“I . . . I really did?” I’d been in this position before and never won.
“Don’t look so surprised! I always knew you’d be a champion.”
I gazed into the stands. Grandma and Grandpa hugged. Mom, Dad, and Chris cheered. They were proud of me. I pumped my fist in the air.
It would have been a perfect moment, except with every pump of my fist, my shoulder throbbed.

Crawfish Boil

I wanted the last day of my grandparents’ visit to be perfect. Grandma and I sat at the kitchen table with our Really Relaxing Colouring Books.*I had *Gorgeous Geometrics, and she had Botanicals in Bloom.
“I miss you already,” Grandma said, “but it’s not long until Christmas.”
Memories of West Virginia gave me a wistful feeling: snowy mountain peaks, sledding, mugs of hot chocolate. “Christmas is still three months away. I wish we lived closer.”
“West Virginia is home, but there are lots of good things about living in Baton Rouge too,” Grandma said.
I colored a rectangle and thought of hot beignets topped with powdered sugar, LSU football games, Mardi Gras parades, and courtyards filled with flowers. But the best thing about Baton Rouge was that my two best friends lived close by.
“You’re frowning,” Grandma said. “What are you thinking about?”
I didn’t tell her my left shoulder felt tight. Aches and pains were just part of being a gymnast. “Claire and Mindy.”
“Such nice girls,” Grandma said. “And I loved meeting their families.”
Claire’s and Mindy’s families couldn’t have been more different. Claire’s dad was a lawyer. Her mom did a lot of volunteer work and ran our Girl Scout troop. Mindy’s dad left when she was a baby, which meant her mom had to work two jobs and didn’t have much time for volunteering.
Grandma held up the picture she’d colored of red roses and yellow daylilies. “While you finish, I’m going to see about helping your mom with dinner.”
“Oh, I think she’s napping. Dad’s cooking tonight.”
“Mmmm,” Grandma said. “Something sure smells good.”
“Babka. Dad’s making my favorite dessert!”
*
To give Grandma and Grandpa a real Louisiana sendoff, we had a crawfish boil. Dad filled a large pot with five gallons of water and added his secret spice blend. He set the kitchen timer for forty minutes, waiting on the spices to work their magic. “Bean,” he said, “how about keeping an eye on the water? After golfing in the hot sun, I could use a shower.”
“Sure,” I said. I played around on my phone, trying to ignore my shoulder, while I waited for the water to boil. Dad returned just in time to add the potatoes, corn, garlic, and andouille sausage. He covered the pot. “Won’t be long now,” he said. “Almost time for the crawfish.”
A crawfish boil was one of my favorite things about living in Baton Rouge. We always ate them outside on a table covered with newspapers.
At the end of dinner, Grandpa held his water glass in the air. “It’s been a perfect visit. A toast to Kate and her gold medal!”
“And a toast to Chris and his solo in show choir,” Grandma added. “I’m so proud of both of you!”
Chris blushed. He was an introvert who loved to playvideo games, but he had this amazing voice. It was almost like he became a different person when he sang.
I looked around the table, lingering on each member of my family. Mom was an only child. My grandparents loved her so much she couldn’t help but pass it on to Chris and me. I wasn’t just Bean, butLucky Bean when it came to families, and Grandpa said they’d had a perfect visit.
Mission accomplished.

Hello, Earthlings

I wanted to have a friend over, but first …