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To the Little Girl With Apert Syndrome Who Feels Like She's All Alone

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Apert syndrome. Not many people know what it is, and no one would expect 7-year-olds to figure it out on the spot, either. No one seemed to understand how a child could be born to look so remarkably different than the rest — not even the one the disorder is affecting.

The closest definition a 7-year-old with Apert syndrome would be able to come up with is it’s something that causes the kids around her to shy away from her. It’s something that gives grief and loneliness and makes her feel as if she has to sit by herself at a lunch table because she feels too awkward and nervous to approach anyone because of how they react to her. It’s something that makes her constantly ask herself, “Why me?”

This is for the 7-year-old me. This is for the girl who spends all her recesses on the playground, walking around by herself because everyone else has drifted off into groups and wouldn’t invite you to play with them. Be patient. You’ll soon surround yourself with a bunch of friends, ones who will love you unconditionally no matter what, and they will be there for you through every obstacle you come across. They will never leave just because you look a bit different from them and had to have many trips to the hospital for surgeries.

I speak to the girl who was often scolded by her mother for not being on the same level of maturity as the rest of her peers (as mature as grade school children can be, at least). You’re going to grow and carry a specific type of wisdom not many people will be able to see with anyone else. It’s the wisdom to judge people on their character, whether they have a beautiful personality more than a beautiful appearance. It’s the wisdom to always hold out a hand to someone in need, no matter where they come from, how they look and how they live. Before you know it, you’ll be right there with your peers, proving your maturity.

vivi zhang

I speak to the girl who grew up living a life of struggles, doubt and judgment. Who didn’t think she would go far in life because no one properly welcomed how she looked compared to the others around her. Don’t give up. Because one day, you will find happiness. One day, you will find confidence just being yourself no matter what society thinks of your Apert syndrome. One day, you’ll find yourself surrounded with friends who will love you the way you are no matter how you look or what you do.

Don’t give up. 

One day you won’t be the lonely girl on the playground.

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Originally published: March 5, 2016
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