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I Knew She'd Have Lots of Needs. I Didn't Know How Much I'd Need Her.

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I’ve had a lot of titles in my life, both professional and personal, but one of my favorites has always been “Stephanie’s sister.”

I was 9 and she was 8 when she was adopted. I have a vague recollection beforehand of my parents explaining to my siblings and me what it would mean to welcome her into our family. I remember them saying we had to all be on board, that this was a commitment we were all making together.

As a 9-year-old, I doubt I grasped at all what they were asking of me. As a 9-year-old, I was happy to make her my sister. She was a great playmate and I didn’t mind sharing my room with her. To me, these were the requirements of a sibling. She has stayed a great playmate for children between the ages of about 4 and 9.

What I understand now that I’m not sure I did then is that my little sister is never going to grow up.

Stephanie was born ridiculously early and weighed a grand total of 1 pound, 8 ounces. Her birth mother was unable to care for her.

Stephanie has pretty severe cerebral palsy and is mentally about 3-4 years old. We’re going on 12 years of watching “Arthur” and “Sesame Street” together and I couldn’t be more thrilled.

It hasn’t always been easy. Sacrifices have been made both by me and by all of my other siblings. Today, Stephanie is 22 and she can’t be home alone. She can’t feed herself, clothe herself, or use the bathroom; she is completely dependent upon me, my siblings, and our parents.

I always felt like complaining was not an option. In high school, I couldn’t stay after and hang out with my friends because I had to get Stephanie off the bus. Sometimes I couldn’t go out because Stephanie needed a babysitter. A lot of my parents’ extra time and money went to her care. Sometimes my issues and my concerns felt less important, which hurt my feelings occasionally. She also occasionally has a temper. You’d better not take her favorite doll, blanket, or change the channel on her favorite show or you will feel her wrath. She can scream louder than almost anyone else I know.

It’s not been completely magic growing up with Stephanie, but it’s been pretty close. My sister, in spite of all her limitations, is one of the happiest people I know. She always has a willing and warm smile for anyone walking into a room. She is friendly, outgoing, always wanting to play and be the center of attention. She is essentially the star and light of any room she is in.

I’m pretty certain that there wasn’t a single high school dance she didn’t attend; boys would call my mother and ask if they could take Stephanie. They’d take her to dinner, generally a child-appropriate movie, home for a quick diaper change, and then the dance. She was even voted high school royalty her junior year at the Sweethearts dance.  She was certainly more popular than I was. I had my friends, but Stephanie had the entire school wrapped around her finger.

It was in high school that complete strangers began approaching me asking if I was “Stephanie’s sister,” but it wasn’t limited to her school friends. Children in the neighborhood would ask the same thing, kids at church, and occasionally people around town at the grocery store or just filling up on gas. Stephanie has made the lives of everyone she has met at least a little better.

Stephanie is perpetually the sunlight in a stormy world. On my most difficult days, I have found safety and comfort simply lying on the floor next to her. Stephanie has made me a better human being. She has taught me patience and compassion. She has shown me to how to smile through pain and face life head on. She has taught me to not judge people based on their appearance or their abilities.  She has taught me through example what it means to give and receive unconditional love.

When I reflect back to being 9 years old and sitting around the dinner table, listening to my parents try to explain the kind of commitment my sister would be, I can’t imagine they could even began to fathom how much better our world would become once she was in it. I’m sure they knew it would be hard, and it would be different, but I can’t presume they even began to understand how much better we would all become for having her in our lives.

I love my little sister so incredibly much and even now as an adult, when life is hard and I’m not sure what to do, she’s the one I want see. She’s the one I want to play with. She’s the one that I want to watch the same re-run of “Arthur” with for the hundredth time. Being her big sister is not only my favorite title, but also an incredible privilege. I love you, Stephanie.

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Originally published: April 6, 2015
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