My first memory of Kara was during my mother’s pregnancy. I was three years old and my mother held me in a rocking chair and said, “I’m going to have a baby, but the baby is very sick.”
Life with Kara taught me to be brazen and outspoken. If she wasn’t going to be able to speak, I was going to speak enough for the two of us. If people were going to be ignorant about persons with disabilities, I was going to teach them. If my home life wasn’t going to be “normal,” I was going to radically embrace the weirdness and make it a part of my identity. I’m sure many people in my life have thought of me as the girl with the disabled sister.
In 2010, when Kara was 19 and I was 22, my role changed from “involved big sister” to “major caretaker.” I moved home with my parents to aid in her care.
Whenever I envisioned my future, I pictured Kara. I planned to live somewhere where she could be close by in a home she could enjoy. When I envisioned my future family, it was always the two of us.
Kara’s death had crossed my mind many times throughout my life before it actually happened. I thought losing her would be harder than losing anyone else, and I had always planned to be present with her in that moment holding her hand.
Read more on xoJane.