July, 1994
High up in the rickety brown bleachers, Fern and Bailey sat slurping the purple popsicles they'd pilfered from the freezer in the teacher's lounge, looking down at the bodies writhing and grappling on the mat with the fascination of the excluded. Bailey's dad, the high-school wrestling coach, was holding his annual youth wrestling camp, and neither of them were participating; girls weren't encouraged to wrestle, and Bailey's disease had started to weaken his limbs significantly.
Basically, Bailey was born with all the muscle he was ever going to have, so his parents had to carefully consider how much activity he should participate in. Too much, and his muscles would tear down. In a normal person, muscles that are torn down repair themselves and rebuild stronger than before, which is what creates bigger muscles. Bailey's muscles couldn't rebuild. But if he didn't get enough activity, the muscle he did have would weaken more quickly. Since the age of four, when he was diagnosed with Dushenne muscular dystrophy, Bailey's mother had monitored Bailey's activity like a drill sergeant, making him swim with a life jacket even though Bailey could navigate the water like a fish, mandating nap time, quiet time, and sedate walks in her busy little boy's life so he maintained his ability to avoid a wheel chair for as long as possible. And they were beating the odds so far. At ten years old, most kids with Dushenne MD were already wheelchair-bound, but Bailey was still walking.
“I may not be as strong as Ambrose, but I still think I could beat him,” Bailey said, his eyes narrowed on the match below them. Ambrose Young stood out like a sore thumb. He was in the same class as Bailey and Fern, but he was already eleven, old for his grade, and he stood several inches taller than all the other kids his age. He was tussling with some of the boys from the high school wrestling team who were assisting with the camp, and he was holding his own. Coach Sheen was watching him from the sidelines, shouting out instructions and stopping the action every so often to demonstrate a hold or a move.
Fern snorted and licked her purple popsicle, wishing she had a book to read. If not for the popsicle, she would have left a long time ago. Sweaty boys did not interest her very much.
“You couldn't beat Ambrose, Bailey. But don't feel bad. I couldn't beat him either.”
Bailey looked at Fern in outrage, spinning so fast that his dripping popsicle slid from his hand and bounced off his skinny knee. “I may not have big muscles, but I'm super smart and I know all the techniques. My dad has shown me all the moves, and he says I have a great wrestling mind!” Bailey parroted, his mouth turned down in an angry frown, his popsicle forgotten.
Fern patted his knee and kept licking. “Your dad says that 'cause he loves you. Just like my mom tells me I'm pretty 'cause she loves me. I'm not pretty . . . and you can't beat Ambrose, buddy.”
Bailey stood up suddenly and he wobbled a little, making Fern's stomach flop in fear as she imagined him falling from the bleachers.
“You aren't pretty!” Bailey shouted, making Fern instantly seethe. “But my dad would never lie to me like your mom does. You just wait! When I'm a grown-up, I will be the strongest, best wrestler in the Universe!”
“My mom says you are going to die before you are a grown-up!” Fern shouted back, repeating the words she had heard her parents say when they didn't think she was listening.
Bailey's face crumpled, and he began to climb down the bleachers, hanging onto the railing as he teetered and tottered to the bottom. Fern felt the tears rise up in her eyes and her face crumple just as Bailey's had. She followed after him even though he refused to look at her again. They both cried all the way home, Bailey pedaling his bike as fast as he could, never looking over at Fern, never acknowledging her presence. Fern rode alongside him and kept wiping her nose with her sticky hands.
Her face was a mess with snot and purple popsicle when she brokenly confessed to her mother what she had said. Fern's mother silently took her by the hand and they walked next door to Bailey's house.
Fern's Aunt Angie, Bailey's mom, was holding Bailey on her lap and talking quietly to him on the front porch as Fern and her mother climbed the stairs. Rachel Taylor slid into the adjacent rocker and pulled Fern onto her lap as well. Angie looked at Fern and smiled a little, seeing the tear-stained cheeks streaked with purple. Bailey's face was hidden in her shoulder. Fern and Bailey were both a little too old to sit in their mothers' laps, but the occasion seemed to demand it.
“Fern,” Aunt Angie said softly. “I was just telling Bailey that it's true. He is going to die.”
Fern immediately started to cry again, and her mother pulled her against her chest. Fern could feel her mother's heart pounding beneath her cheek, but her aunt's face stayed serene, and she didn't cry. She seemed to have arrived at a conclusion that would take Fern years to accept. Bailey wrapped his arms around his mother and wailed.
Aunt Angie rubbed her son's back and kissed his head. “Bailey? Will you listen to me for a minute, son?”
Bailey was still crying as he lifted his face and looked at his mother and then looked at Fern, glowering like she had caused all of this to happen.
“You are going to die, and I am going to die, and Fern is going to die. Did you know that, Bailey? Aunt Rachel is going to die, too.” Angie looked at my mother and smiled apologetically, including her in the gloomy prediction.
Bailey and Fern looked at each other in horror, suddenly shocked beyond tears.
“Every living thing dies, Bailey. Some people live longer than others. We know that your illness will probably make your life shorter than some. But none of us ever know how long our lives are going to be.”