Loving a Disabled Sibling
What is Cerebral Palsy?
CP is a developmental disability that is not contagious or progressive. It causes physical and mental impairment. CP varies in degrees from mild where you would hardly notice to extremely debilitating.
I remember looking down at this little scrunched up thing that they were calling my sister.
Not fully understanding why there were tubes coming out of her or why she was in an incubator, I just thought that she looked like a porcupine.
I had no idea the challenges that were about to unfold. I didn’t know about the frustration, pain, and anger that this tiny girl would soon cause. No one told me that part. All they told me were these strange words that felt foreign in my mouth. Annabell, they told me, had cerebral palsy.
Disclaimer: These pictures are not of me or my sister. And in the interest of trying to preserve a little bit of anonymity, I've changed her name for the purposes of this hub.
The Tough Part
These words would soon become a normal part of my vocabulary:
“Yeah, she walks that way because she has cerebral palsy,” I would offer as an excuse for her awkward gait.
“Sorry she won’t stop yelling. She’s my sister. She has cerebral palsy.”
I have had to explain countless times to countless people who will never really understand what it means. They will never know what it is like to watch a little sister fall down the stairs because she couldn’t lift her foot high enough. They will never experience having to listen to her scream at the top of her lungs when lying in bed recovering from reconstructive surgery or screech in frustration after a particularly rough session of physical therapy.
Most people who meet Annabell don’t see that aspect of her. They see a smiling little girl who runs to me when I come home, yelling my name happily. They see her fall as she runs to me, but then she keeps grinning as she continues to crawl in my direction.
Consequently, my friends see an interminably happy little girl with an adorable, angelic face who loves me unconditionally.
To someone on the outside, it's got to be hard to understand the difficulties of having a sister with a congenital disability like cerebral palsy.
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More Hard Parts
But her glowing persona does not absolve the strain that her disability has put on our family, and -- honestly? -- it is sometimes hard to see the positive side of her.
Most families with eight-year-old kids can say, “Okay, make sure you go to the bathroom, and go get in the car.” With Annabell, it takes serious physical effort to help her walk down the steps, use the bathroom, and climb laboriously into the car.
With each small task taking so much extra effort for her and for us, I have truly come to appreciate how blessed I am. When I have an idea, I express it without stuttering. When I want to go to my room, I run up the stairs without holding onto any special railings. When I do homework, I do it without my parents helping me think through the questions or write down the answers. It is wearisome to constantly help her complete every small task.
Always a Silver Lining Making It Worth It
Despite the hardship that Annabell's condition has brought to our family, it has ultimately made us stronger. We have united to face the challenge of having a handicapped family member, and I know we are better for it. I appreciate the importance of teamwork to get something done because every day my family has to work as a team.
Admittedly, I sometimes get extremely annoyed or frustrated with her because she can be a little bit of a brat.
But minutes later when we are wrestling on the floor of our living room or laughing because a piece of food got stuck to her cheek, I know that there are things more important than being able to walk perfectly or easily hold a pencil. It is more important that we love unconditionally and that we are able to put others’ needs in front of ours own.
I can’t help but think, “I love this kid so much,” and that love overrides all the frustration. Annabell shows me every day how to be happy with what we are given, because it is all we have. She has to put so much effort into everything she does, but she still always has a smile for me. Her smile reminds me of her simple joy for life and of all the lessons she has taught me.
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