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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.”

The amount of care that Kara required impacted most aspects of my life. We rarely had guests over due to Kara’s idiosyncrasies. She damaged a lot of furniture, and insisted, to the point of screaming and tears, that objects be placed in specific places so the house looked strange and disheveled.

My parents grew apart from their friends, and didn’t attend many of my school events. I baby-sat Kara often, and she required constant supervision. She needed the kind of care an infant requires for her entire life. There were feedings and diaper changes and baths and crying fits. We dealt with anaphylactic reactions, dislocated patellas, and many sleepless nights.

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.

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