When I was little, my sister was my protector; my second mother; and my confidant. She packed my lunch, watched over me, and even made all of the games for my birthday one year. She was the mother hen to my baby chick.
My first real memory of my sister is her teaching me how to write my name on the small Fisher Price chalkboard desk we had in our shared bedroom. My sister taught me how to tie my shoes, how to walk across the monkey bars and read. When she was in the third grade, she would come to my class to help us. When I was a little older, she sucker-punched a boy in my grade who continually made fun of me on the bus. My sister would wake me up for school in the morning, guide all of our play, and even though I drove her nuts, she always let me tag along.
My middle school and teen years were really hard for me. I never really felt like I fit in. My sister always told me what was cool and I used her in order to ease my social anxiety. When I got to high school, she made me cool by association. I felt really lucky to have her watch over me and help me adjust to a school that I didn’t feel like I fit in at. We had “big sisters” freshman year and I was lucky to have 2!! During all of this time, my sister was confidently the one in charge. People asked her for decisions about us.
When my sister was diagnosed, my whole world changed. When I try to think back I am sure that I started helping her with more before her diagnosis. Things like her grabbing my arm and holding my hand. But it wasn’t until the time she was pregnant with my oldest nephew that I really began to see a shift in our roles. She needed my help more and I began to adapt more of the mother hen role. This was really hard for me. People began to talk to me when they wanted information from Liz. When she would fall in public people would look to me to make sure that she was ok.
Up until this point, I had almost no exposure to disability. I was flying by the seat of my pants and it made me so angry that people only saw my sister’s disability and not all of the amazing parts of her that were beyond the disability. People began to tell me all the time how amazing I was for taking care of my sister. What people didn’t seem to understand was that we were just doing what we had always done for each other and it was just my turn to take the baton as a mother hen.
My sister protected me from the world when I was little. She gave me so much and helped to teach me who I am. I do take care of her in some ways, but in so many ways we are finding out how to be independent together. For so many years we were dependent on each other as a means of survival, but now we depend on each other for more than that. Don’t get me wrong, I am sure we would both love for the roles to be reversed again, but in so many ways my sister and I have become better people because of the way our roles have changed. We are figuring out our new roles daily!