Nearly 20 years ago, the birth of my twin and I stole my parent's sense of normalcy and their vision of a perfect family and life.
They were given a map without clear directions and forced to navigate the long and daunting road ahead of them.
My parents were confined to a reality they never once imagined or even thought existed. A reality that included dreary hospital ward curtains that provided them with little to no privacy. They became prisoners to hospitals all across the country. A reality full of strangers, holding their children's lives in their hands.
We managed to take my parents away from my brothers for a good portion of their childhood, which left them yearning for attention.
My twin and I, were both born with a cranial facial abnormality otherwise known as Pfeiffer's Syndrome (a genetic disorder causing fusion of the skull which affects how the head grows).
When we were born, it was a total surprise to my parents and family. It was a total fluke. There's nothing they could have done to prevent it or done anything to have caused it.
It's not something I openly talk about, primarily because I want to be judged by what kind of friend I am or who I am as an individual.
Those who see me for the first time greet me with squinty eyes and I am bombarded with a slew of questions as to why I look the way I do. Others automatically assume we were born with a mental disorder and can not function like everyone else does.
In my opinion, a disability or unusual facial characteristic doesn't define me, but rather, it does describe me.
Yes, you're right... I am by no means stunningly gorgeous and never will be. I'll always desire to look in the mirror and see a face as beautiful as Kendall Jenner or my cousins, for that matter.
I believe, if one were to define me with what I was born with, it would dehumanize who I am and erase my identity. Though I am a girl who has distinct features, whose looks are not the society's standard for normal, who has fused vertebrates all up and down my spine, neck and elbows, it still doesn't make me who I am.
This genetic mutation I was given concurrently manifests as one of greatest gifts and one of my worst enemies. It's allowed my family's hearts to grow bigger and see the world in a whole new perspective and evaluate what's actually important in life. By the same token, it has robbed us from ever being normal and having the perfect life everyone aspires to own.
Though my cards haven't been the luckiest, they still aren't what define me.
I am a girl who's well loved. A girl whose confidence does not lie between those who are curious or what others may see.
I am a girl who attends college. One who hoards pens and loves to write.
I am a girl who has never allowed myself be defined by the surgeries I've endured or what I look like.
I live in a crazy world. But, I learned to be described by the morals and integrity I hold. I stopped drowning in the sea of other's perceptions. I learned that how I look says nothing about who I am as an individual (unless I was to ever roll into a grocery store with PJ's on).
Every day, I am thankful for parents who never used what I was born with as an excuse for why I can not function like the rest of the world does. They immersed me into a world that's not always kind, but boy, I am so glad they did.
They taught me that I'm not a number in a hospital nor am I the one who from time to time needs some assistance. I am a strong and resilient human being who wants the same things as the rest of the world.
I am not a disorder or disability. I am Wesley Sanders.
