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To My Older Brother With Angelman Syndrome

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There are so many things I would like to say to you, but you’d just think I’m being your annoying little sister. So I have decided to say a few things to strangers about what it was like growing up together, and our unbreakable bond.

My earliest memories as a kid involved us, in front of the TV, with the video camera set up so we could see ourselves, with me singing and dancing, and you laying on the couch watching me as my biggest fan.

Growing up as your younger sister was different for me than the rest of our family. They had to learn about Angelman syndrome, learn how you communicate and face the daily struggles a family goes through when finding out a child has a disability. For me though, being born three years after you, the family dynamics were already set. Everyone had their roles and I now had to find my role within the family.

In my eyes, you don’t have a disability. I never viewed you as different; you’re just my brother. As I got older, though, when bringing friends over and being out in the world, I started to notice how people would treat you differently or stare at you, and I never understood why. Until one day a friend asked me “What’s wrong with your brother?”

I, confused, answered “What do you mean?” and she said “He’s weird, he doesn’t talk, drools, flaps his arms and follows us around.” I answered “That’s just the way he is, there’s nothing wrong with him.” In that moment, my whole view of you, me, and the world completely changed. I realized that yes, you’re different, but there’s nothing wrong with you. Some people have brown hair, some drool, and some stare at people who are different because they have nothing better to do.

I then realized I had a different role to play. It had shifted from being two siblings who just happened to be best friends and attached at the hip, to me having to stick up for you, be your voice, your advocate, and protect you from those who thought you were “different.” You are a big part of who I am today, and not because you’re different, but you made me want to be your voice and the voice of people who were “different.” Because of you, I work in the field of special needs, and have always been drawn to those viewed as different — because everybody’s different.

You have always trusted me with the most difficult task, being your translator for the rest of the world. Over the years I’ve learned when you get frustrated, you cry and scream and pull my hair. When you’re bored, you scream for me at the bottom of the stairs. I somehow innately know exactly what you want and what you’re trying to say. When others who don’t “speak your language” are around, you cling to me because you get uncomfortable. And none of this has ever bothered me; it’s my duty as your sister and best friend to care for you and explain to others how you communicate.

Now I face the biggest task of all — letting you be in the world on your own, without me to translate or protect you. You now live in your own house, with two other roommates and wonderful staff. But I can’t help but feel like something’s missing in my life. I see you all the time still, but when you’re not there, there’s an emptiness. You’re not there to cling to me, pull my hair, or laugh at me for getting yelled at for something you did. You have your own life now. For so long you’ve been with me, and now I have to share you with others, and it’s time for you to show them how to “speak your language.” I feel like a parent whose child has gone off to college.

I am so proud of you for all you’ve accomplished. You’re the smartest, most loving, compassionate and understanding person I’ve ever met. You’ve taught me more about life than anyone else could ever had (sorry, everyone else). And I can’t wait to see how this next chapter of our lives will play out. I’ve always admired you, and will always be there for you. Spread your Angelman wings and fly.


Your annoying little sister

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Originally published: February 25, 2017
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