I am writing today because I want to share a bit of my story of what it was like for my family and I growing up - before CCA even existed - so that I may share my own personal experiences in hopes that other parents of children with craniofacial differences can be able to gain some peace of mind and clarity when starting this journey and have hope that your child will not only live a happy, full life but also make a positive impact on the world at large.
Growing up, my parents and I never really had any type of support. Emotionally, we did not receive any sort of help. Since I was born in 1976, there was no such thing as the internet, or even computers and CCA wasn't around during my earliest years. Perhaps this was the most difficult part for my family.
From my own perspective growing up, I really didn’t realize I was very different than anyone else. Naturally, I was very aware of the countless surgical procedures I had to have, but I suppose in a sense I wasn’t aware that the surgeries were because I was any different than anyone else, if that makes sense. My mom has told me I was always so happy growing up, I suppose that was because I was unaware of being different and at home I was not treated differently. However, as the years went on, especially when I was mainstreamed into my sister’s school, I became more aware of how I looked and that I wasn't quite the same as other kids in certain ways. As I became aware of these differences, I started feeling the emotional strain of living with a craniofacial difference.
It took me a while to accept the fact I didn’t look like my sister, or really anyone else in my family. Unfortunately, like many kids with differences, I was bullied and ridiculed, but as a defense mechanism, I tried to block it out. People stared when I was out in public but my parents noticed it more than I did. Even though I may have noticed, the most important thing for me was that my parents were supportive of me and so I had a place to belong and a family to rely on.
But even though they were completely supportive and insisted that I was beautiful, no words could ever be enough to make me feel completely whole all the time. Thankfully, the strong foundation they gave me helped me through the hard times and I learned that accepting myself was the key factor. Self-acceptance doesn't come easy to any of us, but for someone with a facial difference I knew it was something critical I had to learn to survive. It took me a couple of years, perhaps into my 20’s, to get to the point that I didn't care what people thought about me, or if they stared. I accepted that people are social creatures and curious (to a fault), and the stares and rude comments were mostly because they were unaware and uninformed. Nowadays, I'm on a mission to help spread the word so the general public is more informed about craniofacial differences and has some knowledge of the importance of kindness towards everyone.
While I am not always able to accept myself, even as an adult, it is something that I am committed to nurturing within myself. I aim to never feel sorry for myself, even though I do often wonder what sort of plan God has for me being different, and why He made me the way He did. Perhaps I'll never understand the "reason" or my calling, but I do know that making a difference is something I want to do in the world.
Since I realize that awareness is so very important and develops empathy in others, I, along with the other CCA Adults & Alums, educate people about craniofacial differences through outreach to local medical offices, libraries, and at my church. I want others to know that I am just like everyone else. Yes, my hands, feet, and face might look different than someone else’s due to me having Apert Syndrome, but on the inside, my heart and my soul are just like theirs ... and yours. In short, I want people to know that I am a human being who deserves to be respected, who deserves to feel love and be loved. If I can help other people realize and understand that me and all the CCAKids out there deserve love and respect, I know I will have made that difference I want to make.