“Different” means a lot of things.
It can describe a situation, an attitude or even a person. It can be good or it can be not so good.
For my whole life, I’ve had to explain my sister is “different.”
Andi, who turned 28 last month, doesn’t look like me, act like me or think like me. She is my sister — my blood — but because she has Angelman Syndrome, she is, well, different.
Angelman Syndrome is a rare neuro-genetic disorder that occurs in one of 15,000 live births or, in other words, affects only 500,000 people worldwide. “Angels,” as they’re commonly referred, have severe developmental delays, walking and balance issues, shaky gait, seizures and little to no speech.
But Andi is happy all the time, and so are all other Angels. They constantly have a happy demeanor and are always laughing. They literally light up a room. Andi has cried only once I remember, and it was because she got her finger shut in the car door.
I’ve said this spiel so much in my lifetime I’ve memorized it. You see, whenever you have to explain your sister is “different” to every new person you meet or every time you refer to your siblings, you get used to it.
Andi’s in a wheelchair and can’t walk; she wears diapers; and she can’t feed herself unless it’s a finger food such as gummy bears which are her absolute favorite. Man, you could be the person she loves most in this world, bring a gummy bear into the room and bam, it’s like she forgets you ever existed. It’s like she’s saying, “Move over, Sis, and gimme those gummy bears.” Gee, thanks.
Because Andi can’t talk, I’ve made it a point to talk for her. As a child, I knew exactly how to describe my sister to someone new. When I had to do speeches or essays for school, I always had a subject to write about. It’s my natural-born duty to be an advocate and educate others on Andi and people like her. Today is International Angelman Syndrome Day and because I’m Andi’s sister, I’ll always talk about her condition on this day.
But sometimes I just want to talk about my sister because she’s my sister — not because she’s “different” or because I need to explain her syndrome or teach someone something. Sometimes I just want my sister to be my sister, end of story.
So, I’ll tell you what my sister has taught me about life just like any other older sibling does for their younger sibling. For someone who can’t talk, she’s always had much to say.
She’s always said to be patient. I learned that real quick as a toddler whenever I wanted Mama’s attention and Andi got it first. I’m sure I threw fits for a while, but eventually, I quietly watched, waited and understood.
She also said to put others first. Don’t be selfish; know there are sometimes things much bigger than yourself and others are more important.
Andi’s always said to be positive. When you’re with Andi, all you feel is happiness.
She laughs, laughs and laughs some more. She’s taught me the importance of letting loose, being silly and not taking life too seriously. We could all use a little bit of that.
She said be compassionate. Having Andi as a sister made me who I am. I am more open-minded and see things from a different perspective.
She said be kind. There are hateful people in this world who will make fun of people like Andi, and you know what she says? Just laugh it off and smile. Kindness is the best medicine for just about anything.
Andi always said be understanding. Understand people communicate differently than you do and everyone is different in their own way. When I came home from first grade to find my Barbies feet and hands chewed to bits — oh yes, by the mouth of my precious sister — I had to understand.
She taught me unconditional love. She’s loved me no matter what. She’s listened to me and she’s held my hand. That’s what love is.
Andi may be different than anyone else in the world, but she’s never been anything other than a big sister to me. When we were little, she used to pull the fire out of my hair and I’d pull hers right back. And to me, that defines our sisterhood.