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5 Important Things I've Learned From Having Apert Syndrome

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Twenty years ago, my mom’s midwife said the four words that made hours of agonizing labor pains worthwhile.

“You have a girl!”

Little did my family know my arrival was not the only present I had to offer.

“Curious… your daughter has Apert syndrome.”

Since that day, I’ve lived through two decades and braved 16 surgeries. I’ve also seen enough to know having Apert syndrome doesn’t mean having a bad life. Here’s what I’ve learned so far:

1. It’s OK to have help. Growing up, I knew more adults than kids my own age because I was always surrounded by therapists and special education teachers who had a responsibility to work with me. They gave me comfort and opened my eyes to the reality that it’s not stupid to ask for help. You don’t always have to try to figure out the puzzles of life alone. Sometimes all it takes is a guiding hand to get on course.

2. Naivety is dangerous, especially when it comes to choosing your friendships. Let’s face it — kids of any age can be judgmental and are sticklers for normalcy. For a kid with Apert syndrome, a case of the insecurities could appear far earlier than it might for typically developing children. My family thought I was blind, deaf and oblivious to the stares and awkward inquiries about my appearance, but I knew there had to be a reason why I wasn’t making friends, and why the friends I did have treated me as more of a tag along than an equal. When you’re different from what society expects, it’s important to choose your friends wisely — friends who will love you the way you are no matter how you look.

Vivi 2

3. You can be beautiful if you want to be. So I’m not the blonde all the cool guys chase after, and I don’t wear Victoria’s Secret and splatter my face with makeup. Sometimes, I get comments that I dress like a boy (mostly from my mom). But I know I’m beautiful because I’m more than just my looks. I know I’m beautiful because I don’t care to impress anyone. Every day I wake up to the same routine of just being me. And that’s when I’m happiest because there’s no other great feeling than just being yourself.

4. It’s not my fault. I was only 3 months old when I first had doctors prodding and poking at me. Growing up, I’d be sitting in the occupancy room, and even when I’d have cartoon videos playing on the TV to cheer me up, there’s a part of me that asks myself, “Why me?” The more I grew, the more I realized I have no control over this. It’s not my fault. I was born with this. I didn’t do anything wrong and I didn’t go against anyone. The doctors aren’t trying to hurt me, they’re just doing the kindest thing for me and making sure I would get the best treatment and medical attention. I never and would never have the power strong enough to control it. No one is at fault for something they can’t control. I am not the villain even if society wants to disparage me just for being different.

5. Just because you’re different does not mean you’re worthless. Like almost everyone in this world, I’ve come across people who are different and don’t adhere to what society deems “normal.” We’re different from each other, but at the same time, we all have one thing in common: at one point in our lives, we might’ve been under the notion that we don’t belong in the world because the world doesn’t always show tolerance for us. But within that world, I’ve found my own world. I found support and friendship and love from friends who are understanding and don’t care how I look or how many surgeries I’ve had. They saw my worth. If I can feel that way, anyone else can, too. So what if you look and act different from the rest of the population? Look around you and find your own world where there are people who believe you matter and who love you unconditionally. Then, you’ll feel like you’re worth it. Everyone is worth it.

So if you’re one of those rare humans who was born with Apert syndrome, don’t worry. You have the voice to make a difference and prove it’s OK to rebel against stereotypes. Apert syndrome is a blessing, not a curse, and you are a miracle.


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Originally published: September 9, 2015
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