Life for me has been different. Growing up with Cystic Fibrosis was a constant battle for me. I had to find my place in life, where I fit in. It was a struggle that I dealt with for years. I wrote this blog tonight because I began to reflect on my childhood memories. I have wonderful memories. I had two loving parents, a wonderful home, and an amazing family. However there were things about my life that were different from my friends. I took a breathing machine for sleep overs, I missed school a lot due to frequent hospital visits and I was sick. I thought back to what made my life different, the same and even what made it better. This is one of those memories that made it different. I tried to reach back in time and really grasp what my mornings were like as a child. The sounds, tastes, and feelings. What it felt like for me, a child with Cystic Fibrosis. So this is what I came up with. This is from an actual memory that I have. I picked the age ten, because I am not really sure when this actual memory was. I do know that this was pretty much my morning routine every day so it would be really hard to narrow it down on a time line. I believe sometimes as we grow older, we forget the way things are seen through the eyes of a child. So I took a moment and stepped back into time, to remember. =)
The sun hasn't risen just yet. The bush against my window scrapes the glass as it always does. I roll over as my bedroom door eases open and the light from the hallway quickly descends into my room eating away at my slumber and telling me a new day has arrived. I hear my mother call quietly, "Summer, it is time to get up." I know what is next. I hate what is next, actually I despise it. I am ten years old at the time and all I want to do is sleep a little longer. Yet I know what is coming is the inevitable and I might as well not fight it. I lean up and let out a deep cough, the kind that has been sitting in my chest all night. My sides tear open and my whole body slumps down into a giant mass of bones and skin. I am still tired, oh so tired. My father walks into my room, being careful not to disturb me. He clicks on the lamp on the side table next to my bed. He folds the towel and then lays it across my chest. He cups his hand and positions it over my lungs. Then it begins. He starts to pound into my chest over and over. The dull thud vibrates all over my body. I ache, I ache to sleep, I ache to breathe, I ache to live, yet I do not want to do what is required of me. I began to pull away giving him little room to adjust his hand. He pulls me back and repositions again asking me to be still. Somewhere in the background my mother comes in with a fresh clean nebulizer with my morning cocktail of albuterol. The beating grows harder and louder. My father's hands are like rough leather and they pore down onto me as if he is trying to rip the disease from my body himself. The taste of honey and lemon lingers on my lips from the night before. The night of coughing, tossing, and turning, coughing up bits of blood that I will find dried up on my pillow in the morning. Yes, one of those nights. The noise in the room is silent, the sound of my hollow chest and the hum of my nebulizer feel up the air. I hear my sister who has awakened and is steadily getting ready for school, while no one takes the time to help her. Too much effort and attention is being spent in my bedroom to keep a sick child alive. My parents work steadily together, almost as a machine. You can hear their gears grinding. My mothers voice sounds weary and full of slumber still. My father barely speaks at all. The room is filled with a silent scream, trying to keep a sick child alive. My breathing is slow and steady as I am buried beneath my blankets. I am comfortable. I feel safe. I know the monster in my closet no where near compares to the one living inside of my chest, eating away at me, little by little. I flip carefully onto my side when my father instructs me to do so. Our situation has brought us to be comfortably numb. This is our life. This is our normal. I notice my sister walks by my room several times. She has her make up on and her hair placed in just the right way. She is so beautiful, like a princess. I want to be like her, I want to be a princess too. I clutch my stuffed rabbit as he pounds me harder. My sides, sore from the night before, are showing themselves to be absolutely wicked now. The aching will not seem to give me any relief. After another ten minutes, my father pulls the towel from my chest and tells me we are finished. As he leaves the room I set up in bed and a cough rumbles out of my chest like a mighty beast waiting to pounce on it's prey. A deep breath follows and it burns yet feels cool and comforting at the same time. My mother comes in and turns off my nebulizer. I swing my legs over the edge of the bed and start my favorite part of my day. Where I am finished with Cystic Fibrosis, at least for a little while and I can be normal like the rest of my friends. I quickly get dressed, scarf down an egg sandwich and grab my backpack. I know tomorrow morning this routine will start all over again, but for now, this moment, I am ten years old and I want to be a princess one day, just like my sister and that is all that matters.