Thursday, 13 July 2017

Blog 92 - Is Your Life All About Your Facial Disfigurement?

I read this post on my Facebook page and it resonated with me.

To my friends with Apert Syndrome. Its just an observation made with love, care & thought. I noticed that some of you are burrowing deeper into that singular identity. You are more than someone with Apert Syndrome. You are a human & there IS more to you than AS & you don't have to focus on that every time. You are a beautiful child of God that can get through the seas of human life. It's ok to make mistakes, it's ok to have some negative little things in life, heck, I don't think people realize that when they hate Mormons or immigrants, that means they hate me & that's ok. I don't expect everyone to love me or agree with me on a lot of things, that's part of life for everyone. Go ahead & critique me for being Mormon or an immigrant, it's apparently a thing. Apert Syndrome doesn't have to be the conversation topic every time & I can attest that it doesn't have to be a life crisis either. Honestly, Apert Syndrome is one of the best things that happened to me. It's not a disease, it's not a curse & it's definitely not an excuse to not explore every beautiful aspect of life. We all have setbacks, we all have baggage, we all have haters, we all have taxes, we all have bad days some days, we all have sad days & heartbreaks. We're human. And please, please learn about African American History & the plights, stories & sacrifices of other cultures. I'm surprised at the fact that some people with Apert Syndrome have yet to learn that they're not the only ones suffering from discrimination, stares & other unfairness or weird public moments. It's not always all about you, or me. We're all important. I'm happy, I'm okay, I just want to raise awareness that there is diversity even within the craniofacial community in the US. 

I like that the person writing this post realises that her craniofacial syndrome does not define her. It is just a part of her. She experiences the same ups and downs in life that many people experience who do not have something wrong with their face. There is discrimination in all quarters. I see it every day on the news. It is the same with my daughter who has Down syndroem. Down syndrome is just a part of her - it does not define her. 

Advocate and spread awareness but do not be bitter about the hand that has been dealt to you.

I think a positive attitude about having a facial difference goes a long way to having a happy and successful life. People who know you, will not care about how your face looks. And those that make comments mean nothing in the scheme of life. Yes the comments hurt, but you need to try and shake them off and keep on going.Yes it's annoying that you have to spend time at the hospital and undergo painful surgeries, but there are many people with other genetic conditions who also have surgeries and spend a lot of time at the hospital - I see them every time we're sitting in a clinic.

My advice is, get out there and live your life. You only have one, so enjoy it and leave your positive mark on the world!


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