For the next few days, I will be posting pieces of my short story “Her 7th Chromosome.” The majority of the events are drawn from real life experiences, I hope you enjoy it!

Part One.
“ ‘Hope’ is the thing with feathers– That perches in the soul– And sings the tune without the words– And never stops–at all”-Emily Dickenson

“Let’s see it honey! Come on out!” Mom said.

“How’s it look?” I asked, stepping out of the dressing room.

“Red looks good on you, babe.” Jack said, “I’ll get you red roses to match.”

“Does is it look too long though?”

“Maybe we could pull this up here a little bit, pull this down, and we’ll need to hem this with your little legs…”

“Mom, knock it off! I like it like that.”

“Fine, fine. Oh! And we can get… Hope, are you ok?”

“Yes. I coughed, Mom.”

“It didn’t sound good.”

“It was a cough! I cough all the time!”

“All the time is right. I heard you coughing all night last night. Maybe we should see the doctor soon.”

“No, its O.K., I feel better this morning.”

“Hope, baby, you know I want you to take care of yourself. Maybe you should listen to your mom?” Jack interjected.

“You guys worry too much. I’m sure I’m fine!”

That night, I went to bed and wrote in my journal:

PROM: The single most important thing in any high schooler’s life! I’m extremely excited! I gotta admit I can’t wait to look good! Jack is being such a sweetheart, going with me to try on dresses, helping me find shoes that compliment my height of five feet to his height of six, and getting ready to look handsome himself! I just can’t wait to dance with him all night, gazing into his beautiful green eyes and falling in love with him all over again, like I have been for the past three years. Mom thinks I’m getting sick, but come on, I won’t get sick now, not for this. Prom is going to be perfect, even if this cough is trying to rain on my parade!

Cystic fibrosis is a scary sounding word, numerous syllables, hissing S’s, impossible to pronounce. But the irony of this word is that many children, including me, from the time we learn to speak, have become familiar with it. Even though I began by stuttering out “Stistic birosis” upon hearing it, I soon grew to learn a word that would change my life forever. Soon I was taking over twenty-five pills a day, running away from Mom as she tried to get me to swallow them.

My lungs, coated with a thick, sticky, unforgiving mucus, chronically become infected making it difficult to breathe at times. I cough a forceful, sickly distinctive Cystic Fibrosis cough as the mucus irritates my fragile inflamed lungs. CF is genetic, sneaking into my DNA, in the 7th chromosome: a defective CFTR gene. This one gene, this one microscopic gene has changed my life forever, making it difficult not only for me but for my family, Jack, and all those who know me. That one stupid moment of creation has spelled out a life of doctors and lung function tests, coughing and medicine, and above all: hospital beds (and what’s worse: hospital food!). I live my life stamped with a life expectancy of thirty-five and I’ve become acquainted with the word progressive, knowing this disease will only worsen with time. Now I’m used to routine hospital admissions. No matter how hard I may try, I always get sick. My lungs will become infected or I’ll catch a simple cold from drinking my “healthy” friend’s Gatorade, and I’ll have to spend one or two weeks in the hospital being treated with I.V. antibiotics, coughing, and doing vigorous therapy to try to get the infected mucus out of my weak lungs. I was used to the usual “tune-up” in the hospital but I wasn’t prepared for what CF had in store for me this time.

NOTE: “Her 7th Chromosome” Copyright Lauren Bombardier 2008

http://thesowhatlife.com