"Makes me that much stronger
Makes me work a little bit harder It makes me that much wiser So thanks for making me a fighter"- Christinia Aquilera I have always been a fighter for my independence and when I finally received it, I was a little girl lost in a big world. Throughout my elementary school years I had a registered nurse as a constant companion, rode an alternate school bus (you know the little ones) and was always attached to my oxygen tanks. It seemed as though I had a lot of friends, but now as I look back at it feels like I was surrounded by other children because I was a novelty. As I got older and entered my first year of junior year as other kids were playing sports and hanging out with each other after school I started to fight my nurse and fought to go to school independently. I though without her by my side I would be a “normal kid”.Finally in seventh grade it happened. The school agreed to have oxygen tanks at school for me and no longer would I have a RN by my side. Then it happened, I was alone. No more nurse but all of a sudden no anybody. I walked the halls by myself, ate lunch by myself I had not true friends expect for Caylie and Nicole. But I wanted more. I tried talking to everyone I could but simply got a smile from them as they walked away. For the rest of seventh and eighth grade I was lonely. Even Caylie and Nicole were branching out and going to parties that I was not invited to and that hurt. My freshmen year I decided to attend the homecoming football game knowing I would be able to hang out with somebody but everybody I found left me behind. So now I’m alone, I have CCM, and Caylie is diagnosed with acute leukemia and I have nowhere else to turn. But what I did was what I always do and that is not giving up. I went to the next game, the next game and the next game after that and continued to be myself and try to make friends. Though it took a lot of time and tears it paid off. I don’t have a lot of friends but the few friends I have are true friends. I have had my share of people staring at me or pointing and whispering about me but none of that matters, I’m Emily and I’m proud of it.
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“Life isn't about finding yourself. Life is about creating yourself.” ― George Bernard Shaw
Although I have had my share of tough times, I don’t want to give the impression that my life is miserable or different. It may be different but I try to look at the good sides. I cannot express enough how much I love my life. Yes there are moments where I want to be 5’2 or be able to play sports. Heck I even wish I was Rachel McAdams, but I think we all wish we were celebrities. I try to look at the positive side of every scenario, I can’t think of what I could have been. We shouldn’t look at what we could have been better, because in the long run we can’t go back in time we can only go forward. For some odd reason I was meant to have this life, hopefully someday I can figure out why but for now I’m here to make a difference in the world. Even though I’m only seventeen years old but when I was younger my parents and I couldn’t look up information on CCM. I couldn’t meet or talk to people who could help me. As technology increases every day, I’m to use it as an advantage and help others. There still aren’t that many known cases of CCM, so here’s my story open for all of you to read. Imp putting myself out there to help every single person in this world, so please don’t hesitate to ask questions. I want to help all of you. P.S: This is definitely not limited to CCM, I want to help everyone. “Nobody can go back and start a new beginning, but anyone can start today and make a new ending.” -Maria Robinson
Change happens no matter what, there's no way around it. It may be good or bad, but we don't know until it happens. Some people love change but others are reluctant to it. For me it depends on the change, getting my hair cut is a good change but going to college, I'm worried about. Don't get me wrong I'm so happy about going away to college, I been dreaming about being independent for as long as I can remember. But I don't like the fact that right now while I'm writing this I have no idea who I will be living with next year. You would think that overcoming so many obstacles like I have that change is easy for me, but it's not. I like high school now; I know who my true friends are. I know almost everyone in my senior year class of over 300 hundred, we been together for four years now and plus three years of middle school. It’s weird to think that I won't see their face every single day. They have accepted me for whom I am, they treat me like everyone else does. I'm worried about going to college and having to start all over again. Having oxygen at night, I will start off my first semester having a single room. I'm worried that people will take that the wrong way and not understand the real me. Will that affect me making friends? I'm shy at first and it takes a while for me to open up, so I'm worried that if I don’t start trying to make friends right away that college won't be the way I have imagined it to be. I'm also worried about losing touch with my friends from high school. I know for a fact that I would never lose my best friend, Nicole, we been friends since 4th grade and inseparable ever since. We been through everything together, she's always been on my side and I'm always there for her. She's the first person who accepted me for who I am, and I will be forever grateful for that. I don't worry about losing her but I do worry about losing in touch with others. I don't like letting go of things and starting over but I guess if it's going to happen I'm going to stand up as tall as I can (I'm only 4'6, so not that tall) but I'll raise my head high and always try to have a smile on my face. That's what my parents have taught me to do. They always have told me to not worry what other people think. I'm finally starting to understand what they meant by that. The first five years of my life I spent Valentines Day's in the hospital, (which isn’t the most romantic date for my parents). Most of the time I was in the hospital due to pneumonia due to the cold snowy weather. Although I can't tell you who my roommate was or my nurses were I can tell you how it has affected me. As I get older I become more appreciative of life and all those miracles that I was given. Today was probably the first year I really thought deeply about my first five valentine’s day. I wondered how I reacted, was I strong, scared, or just acting like a regular baby and all happy? I wonder how other people reacted around me; did they feel sorry for me? I feel like I was a brave child, and I feel like I am who I am because of everything I went through. I want to think that I was brave and I didn’t show that deep down inside I was terrified. I hope that I was brave for my parents even though they were probably always scared. I wonder if I could tell when my parents were scared, they always act brave but could I see right through that? I can tell you that the person I am today always thinks about other people's feelings and I always try to be the bravest person I can. Unfortunately we cannot remember the most important years of our lives, the experiences that make us who we are today. The only thing we can do is imagine. But here's to a many more Valentines Day's.
I'm usually not the one to talk to strangers even though I'm known to talk. I want to start a blog for a while to be able to talk to new people and share my life story. Like I mention I want to inspire people and Ihope to meet people on here who inspire me. I don't want to limit this blog topeople who have CCM or who have kids who have CCM. I want to tell everyone my story and get CCM known. I only known have a handful cases of CCM. Even though I have my friends and family to talk to, I don't really know anyone who feels the way I do. It doesn’t have to be the same diagnoses I have but it can be anything like Cancer or Cystic Fibrosis. I'm a senior at a public high school and I'm 4'6, as you can guess I'm the shortest in my grade. I'm usually not the one to believe that things happen for a reason, but if it's true, I like to believe that the reason I'm here is to make a difference in the world. So even though were already in February in the New Year 2012, I would like to start something new, write this blog and express my feelings. So here’s to something new.
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AuthorI'm just trying to be a normal twenty-six year old in this crazy thing called life. Living with cerebro costo mandibular syndrome, living just like everyone else. Archives
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