Friday, May 17, 2013

"What's wrong with your eyes?"

Please welcome our first "Guest Blogger", Sabrina!

Hi, my name is Sabrina and I'm 22 years old. I was born with Pfeiffer Syndrome (Type 1) as well as a congenital heart defect. I have had 21 surgeries. I'm currently in University, majoring in Health Psychology with a minor in Political Science. I heard about CCA when I was 15, and attended my first retreat in Nashville, TN. It was an incredible experience!! I loved meeting others who have been through the same things as me. Overall I have gone to 5 retreats and enjoyed every second of it. I highly recommend that every family should make it to at least one retreat. It's an amazing event that you will never forget. It not only benefits the child, but the whole family as well!

We are so happy that she has offered to share her insight on the
CCA Kids Blog and we hope you enjoy this new perspective.

When I went out the other night, I got to meet some new people. After being introduced to one woman, she later asked my mom “is she blind?” My mom was shocked, came to my defence and said “there's nothing wrong with her eyes, she has 20/20 vision!”

Normally, a comment like that would have upset me. However, earlier that night, I was complimented many times on how beautiful I was and how nice my dress was. Those kind words meant a lot to me and really made me feel confident. So when I heard about the woman who asked if I was ‘blind’, it just amazed me how ignorant some people can be. I have gotten many negative comments about my eyes over the years. I had hoped they would stop as I got older, but unfortunately, there will always be people out there who just don’t understand.

Being born with a craniofacial disorder presents many challenges for a child, which will continue on throughout adulthood. Even though it was tough going through so many medical procedures, I always felt that ‘social situations’ were more difficult to deal with. I’m not what society considers “normal” and I felt that judgment at a very young age when I noticed kids and adults staring at me. To be surrounded in a world where outer beauty is portrayed as the most important thing, it’s difficult not to let it get to you.

How do you deal with that? How do you deal with trying to blend in with society, when they always make you feel like you stand out? The key is to find people who will love you and accept you just the way you are. I am so fortunate to have the loving support of my close friends and family. When I feel loved, it is easier not to get upset when I’m judged by strangers. Though, of course, everyone has their ‘bad days’. Sometimes, I do get very agitated. If I’ve already had a long day and I’m tired, the last thing I want to deal with is judgemental stares when I’m out in a public place.

Living in a world that is so fixated on self image and outer beauty, I grew up thinking that I would never truly be accepted for who I am. Naturally, every time I met someone new, I would automatically wonder “do they notice something different about me? Do they think I look weird?” Even nowadays, I try not to over think it, but old habits are hard to break. When I went to my job interview in January, I was actually afraid that they wouldn’t hire me because of the way I look. Of course it may seem crazy to think like that, but when you’ve grown up going through situations where people make fun of you, doubt you, and talk down to you; it messes with your self-esteem.

Dealing with stares and judgement is always hardest when you’re a kid. When I got teased, I felt ‘ugly’. I would dream of having a different face. I wanted to be like the ‘pretty’ girls. I thought that I had to be like everyone else in order to feel accepted. It has been a long and tiring journey, but I am finally at a place now where I am happy with the way that I look. I don’t focus so much on it anymore because it’s what’s on the INSIDE that counts.

Would social situations be easier if I didn’t have Pfeiffer Syndrome? Of course. But this is the card I was dealt and I can’t change that. When you can’t change something, you have to change your attitude about it. In junior high, I was surrounded by new students who constantly stared at me as I’d walk down the halls. Eventually, I got tired of being stared at, so I went to the principal to see if I could do something about it. She suggested that I go in front of every class and talk about Pfeiffer Syndrome. I was afraid of how they’d react, but it turned out to be a success! I could see that they weren’t being mean, they were actually just curious because I got asked many questions. The next day, instead of getting stared at, I got waved at! I made so many new friends and I finally felt comfortable at school.

As much as we’d like to prevent it, there will always be ignorance in the world. I will never be able to ‘blend in’ and not get stared at. (Although I will admit that I sometimes ‘hide’ behind my sunglasses so no one can see my eyes). Instead of getting angry at people who stare and make comments, I just feel sorry for them. When I look in the mirror, I just see “me” and I’m fine with it. I don’t think there’s anything ‘different’ about me, because we are ALL different. On those bad days, I ask my mom “what is so different about my eyes? What do they see??” It does frustrate me sometimes because I can't understand what people see in me since we're all different in our own way.

In my first semester at University, I was eating lunch with a guy that I had just met, who lived in the same residence as me. He said “um, do you mind if I ask you a question? Don’t take this the wrong way but... what’s wrong with your eyes?” My immediate reaction was “well, I was born this way!”, because really, what other explanation is there? I decided not to let that situation bring me down because a part of me knew that he didn’t mean to offend me. He just noticed something ‘different’ and was curious about it. This is where it’s good to spread awareness and to pass on knowledge about craniofacial syndromes.

As life goes on, there will always be times where we have to face a difficult social situation and we may feel uncomfortable at the moment, but we have to get past it and move on. Life is too short to focus on negativity. The important thing is to love and accept yourself, and with that frame of mind, no one can bring you down. I have been working on loving myself and embracing my unique side. I surround myself with people who believe in me and encourage me to follow my dreams. I know I can make a difference in this world. I'm going to graduate from University, and get a job where I can help others. I won't let anyone stop me from accomplishing my goals.

Always remember:
Be who you are and say what you feel because those who mind don't matter and those who matter don't mind” – Dr. Seuss


  1. Great post, Sabrina. I can't help but think how insightful your middle school principal was for telling you to get in front of each class and explain what Pfeiffer syndrome is. SO SMART! I know that not only helped you in how you deal with the world today, but also helped all those other students and probably changed how they see facial differences forever! Thanks so much for sharing your journey. You are beautiful--inside AND out!

  2. Hey Sabrina, what an honest and wise article! I definitely remember you coming into my class way back in grade 7 with Mrs. El-Hakim and Mme. Pascale - and how everyone was so impressed by your bravery to come and speak to all the classes in the school. Stay positive and keep up the good work!


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