The Many Faces of Moebius Syndrome!

VA
ph: 571-730-9045

alicia

My mom told me when I was born (on 10/01/94) that the nurse new something about my disorder but she just said everything was fine. It might be only because I have a very minor case. After a while of having me at home my mom noticed I that no one could really tell if I was laughing or crying. She took me in to the doctor and my tear ducts had not fully developed, so that means my eyes did not produce tears. I went in for surgery at 1 year old to get that fixed. So now I have normal tears- now the problem is that I can't close my eyes fully so they tear up too much and it just looks like I'm crying.
     I grew up as a happy child, I thought I was just like everyone else. I figured out my own way of doing things like: using a straw, drinking out of a cup, when I swam I had to use goggles to go under water and when I slept my eyes would stay open just a little. It's all different than what you would think. It's been very hard during allergy season especially because my eyes can't always keep the dust and things out of my eyes or I cant squint from the sun. - now I have contacts but they haven't been working great, so for now I wear my glasses, and I don't have the worst eye sight so sometimes I can just see without glasses or contacts.-
 For school in the beginning wasn't so bad, kids don't really notice that stuff. Once I got to about third grade I would get teased a lot about my smile that it was different than everyone else's. Sometimes I wanted to cry, I got in some trouble in elementary school for getting into fights with mean kids. My mom told my teachers about it but even the teachers still were really harsh about it, one teacher even called me names while taking my picture! In fifth grade things got better, people matured and I just started being me and it turns out that people love it!
     The start of middle school, sixth grade, Through the school year I was curious about this problem I had because all I thought it was, was just paralyzed muscles, I had no idea what it actually is. So that summer I started going to the doctor and the library and I learned that was I born with  a mild case of a rare disorder called moebius syndrome/facial paralysis. The doctor did an MRI and tests, which I didn't like but he said that people with this can have heart problems, but no worries, I'm healthy! So I learned all about moebius syndrome and researched like crazy, and met the greatest people online who were willing to share their life stories with me. I don’t know anyone in person with this disorder.
     I also started the school's dance team in 6th grade. It was a little tough with the smiling, facial expression, taking team pictures, and peoples remarks but no one stopped me from dancing. Dance is in my blood and I do it because I love it.
 In seventh grade I finally made a YouTube video, partly because I was really getting sick of the recurring comments from people and I just wanted to put it all out there. And that year I made incredible friends that support me and that I love. Then I got braces and it made my speech a little worse. It had already been difficult pronouncing things.
     Now I'm on my way to being a Freshman in high school. I've become so much more open with moebius, I don't really like to have to explain myself to anyone, but I will so ask me questions and talk with me about it instead of your idiot friends that know nothing about me. I now see this disorder as a blessing in disguise. I can't really put it into words… I love who I am but it can be hard when people rip me down . I'm not one of the most popular people, Especially at school I don't feel like I can be myself around everyone. I try to be outgoing but sometimes when I smile around new people they give me looks and I don’t always want to give them a speech, but some people don't even notice. So ok. I know- who cares what other people think, uh me.? Oh, if you try to have a starring contest with me, you are going to lose, I have a ridiculous poker face (even though I don't know how to play poker). I have not had a boyfriend or even my first kiss yet, I don't really know why but im still young so I'm not trying to grow up too fast. I'm still confused on who I am or what I'll become. I made a vow to myself that I'm going live up my dream and I hope to inspire people just as everyone inspires me. I love trying new things and I'm in love with dance and I'm big into cosmetology stuff, I would love to write a book or movie on my life experiences with moebius syndrome and rare disorders. A big dream of mine is to be on a talk show, like the Tyra Banks show. I have a special interest in people are different than others. I always try to understand where people are coming from and have great sympathy and respect for them. I feel so blessed for the people in my life, I could not thank or love them enough! I've had some depressing times but I learn to get through it and I couldn't do it alone. I love to put a smile on peoples faces, "I smile with my heart". I am a very happy and nice person, once you meet me, I promise you will never forget me.
     To all of you who have put me or anyone else down about how they look, whether it be in front of them or behind their back, just know that karma is a bitch- what goes around, comes around.

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VA
ph: 571-730-9045