Out of My Heart: Chapters 1–9

The firefly hovered over the back of my hand, then landed—slowly, effortlessly. I could hardly feel its delicate touch. Two wire-thin antennae, flickering, protruded from its tiny round head painted with a small red dot.

Its black wings, so shiny, opened and closed like scissors. I barely breathed. Dark lines that looked like they’d been painted on its back with a fine-tipped pen separated the crimson from the ebony.

The firefly seemed to be in no hurry to leave. It looked right at me.
I wondered about the magic of having iridescent floaties attached to my body—what it would feel like to lift into the air and glide on a whisper of wind.

Oddly, I still remember that the bill that night came to $47.47. My brain does that—recalls random numbers, maps, facts, and computations.

For example, my sign for “Mom” is my thumb on my chin, with my fingers as straight as I can get them. “Dad” is thumb on forehead with fingers up. And my sign for “Penny,” even though she’s four and a half and sassy, is both arms hugged together like a baby in a cradle.

“Well,” Mom said, “let’s think about this. How did you catch them?”
“They just flew into my jar!” Penny told her solemnly.
“And Mrs. V helped me.”

“Do you think some of those bugs might have moms and dads waiting for them in the bushes?”
“Hmm.” Penny pondered this. “Maybe their parents don’t know they’re out playing in the dark. Maybe they snuck out!”

I like most of my teachers and classes. I love being a part of all that whirling turmoil—most of the time. But even though I have an aide who helps me with things like taking notes and eating lunch, school can be...a bit much.

“The Green Glades Therapeutic Recreational Camp has been a support for campers with special needs and their families for twenty-five years,” Mrs. V read to my mother.
“Twenty-five years,” my mother mused.

My parents do a great job of making sure I get the best medical and therapeutic care possible. But those doctors sometimes mess up too. Like, they’ll say I “suffer from” or I’m “afflicted with” cerebral palsy. Spoiler alert: I’m not suffering from anything. And just so you know, CP is not a disease. It is not contagious.

My parents do a great job of making sure I get the best medical and therapeutic care possible. But those doctors sometimes mess up too. Like, they’ll say I “suffer from” or I’m “afflicted with” cerebral palsy. Spoiler alert: I’m not suffering from anything. And just so you know, CP is not a disease. It is not contagious.

My parents do a great job of making sure I get the best medical and therapeutic care possible. But those doctors sometimes mess up too. Like, they’ll say I “suffer from” or I’m “afflicted with” cerebral palsy. Spoiler alert: I’m not suffering from anything. And just so you know, CP is not a disease. It is not contagious.

“Oh, I’m sure they have safety protocols that are NASA-worthy,” Mrs. V said calmly. Then she was back to excited. “And, oh, Melody, get this—horseback riding!”

So I tapped out again, “Can I go? Can I go?” I looked at Mom and did my best to conjure up the face Penny used earlier to get Mrs. V in on the firefly hunt.
Mom continued to ignore me, but I was cool, because if they were all excited, then chances were...

She read the list to me:
—Please give a full description of applicant’s abilities and disabilities.
—Does the applicant have seizures?
—Describe any allergies or possible reactions.
—Describe reactions to insect bites.
—List all medications the camper takes, the quantities, the times medication must be given, and any adverse reactions.
—Has the applicant ever had skin rashes, breathing problems, low blood pressure, high blood pressure, ear infections...?

“You’re in! You’re in! You’re in!” she kept whispering as if in disbelief.
Dad gave Mom a curious glance as he sauntered through the front door. He kissed her, then picked Penny up and twirled her around—after she made sure he smelled her hands.

I kicked. I twisted. I did my best to point to the Nike sign.
Mom, totally baffled by my behavior, said, “What? You don’t like those? I think they’re cute and kinda stylish—plus, they were on sale!” She smiled hard to convince me.

Penny flitted around, aware of the excitement, but not really sure what it all meant, except that she always managed to get a new coloring book or markers or clothes for her dolls every time we made a run to the store.

“Ouch!” she cried with fake despair. “My baby is growing up on me!”
We giggled at that, but she was right. I was.

Penny scurried in and out of the house, wearing the little blue backpack that Mom had given her for the trip.

It was nine a.m. Time. To. Go. Check-in was at noon. We always like to leave early for stuff these days, because of that time I was left behind by that group of kids I thought were my friends. I’ve been obsessed with being early ever since.

But Mom wasn’t ready. She peppered my dad with a whole slew of questions.
“Did you load her meds?”
“You just did, not two minutes ago,” Dad replied patiently.
“Safety straps for her wheelchair?”
“Check.”

She leaned in and gave me the biggest hug, engulfing me in that blindingly pink dress. “You got this, kid,” she whispered. Then she tucked the packet of bracelets into my backpack.
“Oh, Violet, how very thoughtful of you!” Mom exclaimed. I flung my arms out in agreement.

I kicked the back of Mom’s seat.
“Yes, Melody? Are you okay? You need a bathroom stop? Doesn’t look like we’ll pass one soon.”
I glumly shook my head no. How am I going to tell them I want to go home? Elvira was stuck in the far back with my chair.

Maybe Mom and Dad would stop on the way back—but, gee, they’d be stopping without me.
Then it occurred to me that Penny wouldn’t be able to say, Oh look at that—a humongous ice cream on the roof, Dee-Dee! Because I would be sitting all alone with strangers while she rode back home.