“Wait, what are these ‘UFO’ things?” I asked my mom as she put my three year old sister in a pair of awful plastic foot braces, also known as ankle-foot orthotics.
“They’re called ‘AFOs,’ Haley. And before you know it, she’ll be running around the room with you!” answered my Nana. I learned that these mysterious ‘AFOs’ would be the great solution to all of my sister’s physical disabilities, and I began to run around the circular carpet in my grandma’s living room, imagining Amanda one day running alongside me. I had optimistic dreams of my family finally being able to do things like any “typical” American family, such as going to Disney or eating out at Friendly’s on a busy Friday.
My sixteen-year-old sister Amanda was born seventeen months after I was born. In utero, however, she suffered a stroke, causing her to be diagnosed with cerebral palsy.
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Once she finally came into the world, I, of course, was too young to understand what was wrong with my new baby sister. To my two-year-old self, she looked like every other baby, though as the years passed, I began to notice how Amanda didn’t act like my friends, and how she was still in kindergarten as I moved on to the third grade.
Soon, Amanda’s disability became a prominent aspect of my life, and as she got older, those “typical” American family activities became more difficult. Going out to dinner involved finding a place to park the wheelchair while Amanda impatiently waited for the food she believed would just arrive before her. There were numerous occasions when my sister pulled my hair, and all I could think was, “I bet those people think we’re insane.” And of course, family trips to Disneyworld were never easy, since all the rides I wanted involved either long lines or were not handicap accessible. As a little girl who had a penchant for getting what I wanted, a sister with disabilities was the last thing I needed. I used to think Amanda received special treatment and more attention due to her disability, and I believed that my parents never realized that maybe I too wanted my dad to hold me when he came home from work, just like he held my sister. Once on a family vacation, I was so annoyed that I had to share a bed with Amanda that I pinched her until she helplessly cried. My mom came running into the room with concern for both Amanda and me, which was exactly my devious four-year old plan.
It wasn’t long before I realized that actions such as pinching Amanda were never going to solve anything, and like most things in life, you can’t always get what you want. I decided it was time to accept that fact, and I began to work my life around her needs by accepting them as an undeniable part of my life. Soon, I began to proudly declare that the girl in the wheelchair was my sister. While I may have once resented Amanda for the attention she required, I learned to empathize for all the simple things in life she can’t do that I often take for granted, like walking. I soon accepted the fact that I receive, and probably have always received, the same amount of love and care as my sister.
Life with a sister with disabilities has presented me with challenges and experiences that I know most people will not face in their lifetime. As I grew up, I came to realize that Amanda is truly a blessing to my life. Although those AFO’s (and the many that followed) never helped her to walk, her comedic personality and loving nature bring so much joy to me. Because of Amanda, I have a greater understanding of others, especially those with disabilities and their families. I plan to utilize these skills by pursuing a career in either Music Therapy or Speech Pathology, where I hope to help children with disabilities grow and experience. Life with Amanda has shown me that instead of letting the annoyances of life get me down, I should find a way to grow through them and adapt them to my life as something I cannot change. I learned it is possible to benefit from any situation, whether it is positive or negative. Without the experiences that my sister has given me, I feel I would not be as strong of a person as I am today.