I asked my daughter if she could write about her experience having an older brother with a disability. This is what she had to say.
My daughter’s perspective
I guess, when it comes to being Caleb’s sister, I can’t imagine my life without him.
I’m his younger sister, after all. I’ve never known life without him. He’s been a constant in my life, even now, when I’m away at college.
As a young child, I never realized our family was unique. Sure, Caleb might’ve looked a little different, but he was fun to play with. And even when he got on my nerves (like the many times he would knock on my door as soon as the sun rose to check up on me) I never thought of my life as being different.
When my preconceptions changed
School was where my preconceptions began to change. Classmates of mine would comment on Caleb’s appearance in a brutally honest manner that only elementary aged children can do.
“Why does he look like that?”
“Why doesn’t he have eyebrows?”
“What’s up with his face?”
I, a child who loved knowing the answers to absolutely everything, was at a rare loss for words. I couldn’t explain why Caleb was the way he was. My idea of normal began to shift, and I slowly began to realize the world didn’t have the same perspective as I did. They viewed Caleb differently. However, it wasn’t an earth-shattering revelation because it didn’t change MY view of him. He was still my older brother. My friends had their older brothers, and I had mine.
For me, life continued on. We got older, and graduated from elementary school. We moved on to middle school and high school, and forged new friendships. We all began to mature. But Caleb never did.
It wasn’t always easy
I wish I could say that I was a saint throughout it all. That I never once resented Caleb or the circumstances we found ourselves in. But there were, unfortunately, many times I privately resented our family’s version of normal.
For example, when my friends began dating they would talk about how annoyingly overprotective their older brothers would be. And I would grit my teeth and think about how Caleb would never act that way towards me. If some boy broke my heart, Caleb would not be the one at his door, ready to defend my honor. Because despite the fact we were now teenagers, Caleb was still mentally five. He would rather talk about dolphins and sharks than any potential boy drama I had. I realized he would never protect me, our roles were reversed. HE was the one who needed protecting, and I needed to be the one to protect him.
What I’ve learned
Sometimes I look back on my childhood and feel like I grew up too fast. In my child development class, I learned one of the key traits of every child is egocentrism. A child’s world revolves around themself, and they often have difficulties perceiving another person’s point of view. But growing up involves shedding this viewpoint and realizing the world is much more complex.
For me, I shed this point of view at an early age. As soon as I learned that Caleb was different, it felt impossible not to see things from his frame of mind. I realized Caleb couldn’t express himself the way I could, and he would never be able to do so. So it was up to me to speak up for him, because what kind of sister would I be otherwise?
Though there were times I resented Caleb, I never once regretted his existence. Even during my times of resentment, I couldn’t hate our circumstances for too long. Caleb has taught me so many invaluable lessons, and for that, I’m grateful. And though he’s never protected me from heartbreak, he has protected me in other ways. He’s protected me from apathy, from impatience, from indifference. Caleb has taught me how to care for everyone, to have joy in all situations, and how to have wonder in the smallest things. I can’t imagine my life without him.