Brayden is a smart and witty twelve-year-old boy, who loves video games and sports of all kinds, especially football, but the only thing holding him back is that he has Duchenne Muscular Dystrophy. He was diagnosed on April 1st, 2010 with the disease, which will one day (possibly sooner than later) put him in wheelchair fulltime. His mind is sharp as a tack, but his little body is giving out daily; the more tired he gets, the more frequent the falls. Luckily he hasn’t broken any bones (yet). He will one day need a tracheotomy to be able to breathe and speak, and his lungs and heart are muscles that will give out just as easy as his arms and legs. Most boys with this disease will not live into their 20’s, and the disease claims lives daily. To help Brayden in his journey with DMD, S.J. has pledged to donate all of her pre-order proceeds to Brayden’s family.
Following the scent of cheese toast and eggs, I stop short when I see my mom standing in the kitchen doorway, her hands fidgeting with the frayed hem of her apron, a tight smile on her face. I don’t like the way she looks at me – worried and afraid and about to cry all at the same time. “Mirabella, dear,” she says, almost whimpers. “Daddy and I need to talk to you.”
Heat crawls over my skin, flushing my cheeks and leaving gooseflesh on my arms. Dread squeezes my lungs. “Okay,” I manage, but it takes me a minute to remember how to walk. Mom doesn’t move out of my way.
I notice the radio isn’t on again. Dad usually listens to it for his morning news.
She kneels to look me at me on my level, and I know now something really bad must have happened… or is happening. Yet again, the rings around the moon were right.
“Everything’s okay,” she lies, reading my worried expression, “But I want to warn you about your father before you see him.”
My eyebrows draw together. Warn me?
I hear dad shifting in his chair, and he grunts nervously. My chest clenches tighter. All I want is to see him. To know what’s going on. I can’t fathom what she would have to warn me about.
“His skin is… different than before.”
“Yes, baby,” she soothes. “And whatever you do, please don’t scream. You know how thin these walls are.”
I muster a nod.
“Okay,” she says, clasping my hand and straightening, “It’s time.”
She leads me into the kitchen, my heart racing, eyes snapping right to my father. He’s sitting with his face behind his hands, his elbows resting against the tabletop. The skin on his arms and hands look the same to me – smooth and the color of coffee with milk. Still normal. I breathe a sigh of relief.
“Is she looking?” he asks through his hands.
I answer for her. “Yes, daddy.”
He lets out a long slow breath – a brooding sigh.
“Show her, Grant,” mom pleads.
Moments pass. He sighs again and slowly moves his hands away. Behind them, blue marks, starting at the corners of his eyes, branch out in a rough, jagged pattern – like webs of blood vessels, but more defined – over his cheekbones and stopping along his jawline. Smaller patches curl around his temples. It almost looks like a butterfly, almost beautiful, like these odd markings are meant to be there. Like someone had painted them for fun. I would assume this is all a joke had my mom not been acting so weird.
I look up to her questioningly. Why would this have made me scream?
Her hand meets her chest, and I can tell she’s relieved I didn’t freak out, but not all the concern is gone from her eyes. At least she’s smiling normally now.
“So you aren’t afraid?” she asks.
“Why would I be?”
Her lips press tight. She throws a nervous glance at my father.
“Because these are permanent,” he says. “And they’ll get worse.”