A young girl details the struggles of living with Cystic Fibrosis.
Once upon time there was a little girl who was very special. She had long golden hair that looked like sunshine and dark blue eyes that held an ocean of knowledge. But other little girls and boys thought the little girl was very, very different, and no one wanted to be her friend. She had a disease called Cystic Fibrosis, which meant she had trouble breathing and digesting food because there was a sticky mucus build-up in her lungs and pancreas. Life was very hard for her. She was very sad. Yet what she didn’t know was that the angels had a plan for her. But this plan was a little scary, and it would need the little girl to be very brave. The angels were sad that she was hurting, so they tried to ease the little girl’s heartache with special secrets. This is the story of the little girl and her special journey.
Today I woke up before the sun did again. Mom and Dad were still fast asleep, so I decided to stay in bed a while. My feet dangle off the edge of my bed, and I pull the sheets up close. I can hear my breathing, labored and painful. In case you didn’t know, I have Cystic Fibrosis. Cystic Fibrosis is sometimes called “65 Roses”, because if you say it out loud, that’s what it sounds like. 65 Roses. I’ve had it my whole life. All of my ten years and fifty eight days.
The doctors say that I don’t have long to live. I guess I always knew it, but it’s still a little scary. Well, I’m not that scared, because I have a secret. Angels talk to me. They tell things I’m not supposed to know. Like what Grandma is doing up in Heaven. They say that she likes to play with my gerbil, Hammie. I miss Grandma and Hammie a lot.
Sometimes right before I fall asleep, the angels whisper a secret to me. It’s the same secret every time, but they seem to think it’s pretty important. “Loe…”, they whisper. “Loe… it will be hard, but don’t be scared. Loe… it’s for the best. No more pain, Loe. Loe… we have a very special job for you, Loe. Hush now, Loe. Don’t cry. You’ll see us soon, Loe. Loe…Loe…Loe…”
I sit up with a cough. Hack, hack, hack. Phlegm flies up from my lungs. I can feel mucus sticking to my insides, making it hard to breathe. This is always when I start to panic. My breath comes in short gasps. I can’t breathe. Cough, cough. Hack, hack. Footsteps run down the hall. My parents rush into my room. “Loe, honey! What’s wrong? Oh, John, get the car started! We need to take her to the hospital!”
Hospitals always smell like sickness. Sickness, medicine, and lost hope. I lay in a white room, in a white bed, in a white hospital gown, with a white blackness surrounding me. My mom snores in the chair by my bedside, and my dad is in the halls, pacing up and down.
“Mom.”, I whisper. “Mom.” She sits up with a start. “Huh? Oh, what do you need, Loe sweetie?”
“I just wanted to talk to you about something.”
“Of course! What is it?”
“You and Dad should really have another kid.”
“What? Do you want a sister or brother, Loe sweetie, Loe honey?” My mom can’t seem to stop saying my name.
“No. It’s just that when I die, I want you to have another kid to love, to dote on, to worry over.”
“Loe! Honey, you’re not dying anytime soon! Not until you give me some grandchildren!” We both know she’s joking.
Mom falls asleep again, and I lay back and close my eyes. The angels start to whisper. “Loe. It is time. Are you ready? You need to say good bye. It is time to start your very special job. Do not be afraid. We will be waiting. Do not be afraid.” I know it is time. I start to shake. I start to cry. But I cannot stop it. I can feel that it is time.
Mom wakes up, and Dad comes in from the hall. “Bye Mom. Bye Dad. I love you.” They hold my hands. “We love you, Loe.” I close my eyes.
I’m far, far away. At one end of a long, long tunnel, I see my parents. On the other end, I see Grandma, Hammie, and the angels. I float toward my parents, then stop. Grandma calls out to me. Hammie squeaks. The angels whisper, “Loe. It is over.” I turn around and fly into the angels’ arms. They embrace me. I’m drawn into a world that is both bright and dark, both large and small. Both happy and sad, but a healing kind of sad that is okay. The angels give a long white robe and a shining gold halo that matches my hair. “Now, little Loe, it is time for you to earn your wings.” I nod, and fly back down the tunnel. When I emerge, I see my parents hugging each other, crying. I fly down to them, brush away their tears, and whisper, “Don’t grieve. All is well. I am happy.” A small tinkling rings in my ears. White feathered wings sprout from my back, and I flap them once, twice. Then I fly out the door and into the hospital hallway. My wings beat against the air, leading me to the room of an old, old man. “It is time. Do not be afraid.”, I whisper to him. He smiles, then closes his eyes. My heart soars, and I continue flying through the hospital, bringing gentle whispers.
Gentle, gentle whispers.