Twenty
By EH Rydberg
“I’m sorry Mr. and Mrs. Smith, I wish the news had been different.”
“It...it’s not your fault, Doctor Clyne *sniff* I only wish...”
“It’s unfortunate, Duchenne Muscular Dystrophy is not something commonly screened for...”
“It wouldn’t have mattered, doctor, we could never have...aborted him.”
“I see...then you have all the more responsibility to be strong. Remember, this is not about you, it’s about him.”
“Y...yes, doctor.”
“Of course, doctor. We understand.”
“I’m going to call him in now, to explain some of the details to him.”
“Is that wise? Don’t you think it’ll frighten him?”
“Children are amazingly resilient, Mr. Smith and I believe it’s very important that he know at least the basics. Remember, we all have to die sometime so it’s not as important how long we live as how well. You have the chance to make his remaining years very enjoyable...or very miserable.”
“Of...of course, doctor.”
“Nurse Patty, could you bring in Johnny please?”
“Mr. and Mrs. Smith, if you don’t mind, I’d like to talk to your son alone for a few minutes. If you’d have a seat in the waiting room, please. It won’t be long.”
“Of course.”
“Ah, Nurse Patty and Johnny. Nurse, could you show Johnny’s parents to the waiting room, please. Get them some water or reading material, as they'd like.”
“Certainly, doctor.”
* * *
“Hi Johnny, how are you feeling?”
“Fine, I guess.”
“You’re feeling a little tired, yes?”
“Yes.”
“Don’t worry, that’s normal.
“How old are you, Johnny?”
“Six.”
“Do you like being six?”
“Yah, I guess.”
“You’re in school, now? First grade?”
“Yeah.”
“How is it.”
“Okay, I guess. The teacher hates me and Jimmy Mack picks on me all the time...”
“Why would he do that?”
“He says I’m strange.”
“Do you know that kids used to call me ‘strange’ too?”
“No.”
“It’s true. Do you think it’s bad to be strange?”
“I don't know.”
“Well, I don’t think it’s bad at all. If everyone was the same, it’d be a pretty boring world, wouldn’t it?”
“Yes...I guess.”
“Would you want everyone to be like Jimmy Mack?”
“No!”
“See what I mean?”
“Heheh, yes.”
“We’re all different, Johnny, and that’s a good thing. It just happens that you’re a little more different than other people...Did you know, inside your body, right now, there are millions of tiny little balls?”
“No...”
“Don’t worry, they’re normal, everyone has them. They’re called ‘cells’. These little balls are what make up your entire body. Pretty neat, huh?”
“Yeah.”
“The balls, ‘cells’, have all kinds of things inside them that help us eat and breathe and run around. One of the most important things they have are special strings of...spaghetti.”
“Spaghetti?”
“It’s true. Lots of different types of spaghetti.”
“Really?”
“Really. I’m a doctor, would I lie to you? This spaghetti grown-ups call ‘DNA’, but that’s not important. What is important is that it controls everything about your body. Remember when I said that we’re all a little strange?”
“Yes.”
“Well, that’s because we each have different spaghetti. Mine is different from yours, yours is different from your mom and dad’s and so on. Each of us have different pieces here or there, some added, some missing.
“It turns out that your spaghetti is missing some important pieces that help your muscles to be strong.”
“That means I’m sick, doesn’t it.”
“...yes, Johnny, it does. It means that you probably won’t live as long as most people.”
“Will I grow up? I want to be an astronaut when I grow up.”
“You will probably grow up to be about twenty.”
“Twenty? That’s old. I’m only six now.”
“Yes...it is.
“Nurse Patty, will you show in Johnny’s parents please.”
“Yes, doctor.”
“There are lots of fun things to do in that time, Johnny. I’m sure your parents will show you many things and take you lots of great places.”
“Hi, doctor.”
“Mom, I’m going to be twenty!”
“That’s great, honey. It’s time to go now, run over and get your jacket.”
“Ok. Twenty, twenty, twenty...”
“Mr. and Mrs. Smith, your situation is never easy and what you’ve chosen requires much courage. Please, remember: tears are selfish. Make the most of the time you have together. Think of the joy of life, not the fear of death and his days will be happy regardless of what happens.”
