This Is What Defines My Sister


My older sister has Down syndrome, and I love her, but we do face some challenges. There have been times in my life when I’ve wished I could have a “normal” life — when I wanted a big sister who had gone through everything I was going through and could guide me. Someone who had already had the argument with our parents about when the appropriate curfew was so I would eventually get away with a later one because she would have tired them out over the years. A sister who would keep a secret instead of blurting it out loud the minute she was alone with one of our parents.

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I wish I could have a conversation with my sister and know she understands what I’m saying instead of worrying about my word choice or making sure I’m talking to her like an adult instead of as if she were 5.

I wish I didn’t have to question everything I do. Am I acting like her sister? Am I acting like her second mom? Aren’t they the same thing? Do my friends understand the sister/mom role I have to play? Do I make her buy her own movie ticket from the male cashier so she learns not to be intimidated in these situations? What do I do when she starts crying at the ticket booth because I refuse to buy the tickets for us both? What do I do when people stare and think I’m being mean to her? I’m only trying to help — don’t people understand that?

Screen Shot 2015-04-17 at 1.22.30 AM Though I do have wishes, I wouldn’t change anything about my sister (well, I do wish she was taller). Everyone says this about their family members with special needs because it’s true. The gift of being blessed with someone who has a disability is nothing like you would imagine. It transforms you into a person you didn’t realize you could become. I would never want to change my sister or the life I have with her. It’s not easy, but neither is anything else. We just have a different normal — a different set of rules and expectations. It doesn’t mean yours is better than mine or vice versa. We all have busy lives full of different roles to play and people to love.

Besides loving pasta, pizza and Netflix, my sister loves hugs more than anything. I roll my eyes when she does it, but hugs from her don’t compare to anything else.

My sister is a smart, beautiful, hilarious and sarcastic adult woman. She is determined to not let her disability define who she is, but she’s somehow still able to understand her limits. She has already overcome so many obstacles. When I have a bad day, she’s always able to put a smile on my face with the simplest text or a quick Snapchat. She has made me a more patient and more understanding person. She inspires me every day. She is the reason my life is so happy and filled with love.

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