Ever since I was young, I’ve loved to write. If there was a topic or situation that stirred something deep inside of me, I needed to write about it. Sometimes, my writing was just for me, while other times, I felt compelled to share it.
There’s always been one story that I’ve dreamed of writing. My brother, Zach, has Cerebral Palsy. Zach is amazing. He has talents galore and can make me laugh like no one else in the world can. But growing up as Zach’s sister wasn’t always easy. Even though my parents are incredible and did their best to raise Zach and I with all the love that is humanly possible, there were some tough realities that were simply beyond their control.
I remember standing in line at McDonald’s once when I was probably 8 or 9. Zach was in his wheelchair, and a little boy pointed to him and asked, “What’s wrong with you?” I was furious and told that little boy off. The poor child wasn’t actually trying to be cruel; he was just curious about something he didn’t understand. However, I didn’t understand his motives. In my world, my job was to protect my brother from people who made him feel bad about his disability, and I took that job extremely seriously.
While I felt a strong urge to protect and defend Zach, I also felt jealous of him and the attention he received. Sometimes, this entailed doctors and nurses hovering around Zach after one of his surgeries. Other times, it involved special gifts, visits from celebrities, and newspaper articles. I was jealous of all of it—the good and the bad. But as soon as I felt that familiar pang of jealousy, I would simultaneously feel a sense of guilt. “What kind of sister is jealous of her brother for having a disability?”
The hardest part, though, was my desire to be “normal.” The word “normal” was the equivalent of a bad word in my family. We made it a habit of teaching others that there was no such thing as “normal.” Every single person had their own set of challenges; some were just more visible than others. Our family wasn’t any different than any other family, we explained. But deep down, I knew that it wasn’t true. My family was different. We sat in different seats at baseball games; we didn’t wait in lines at amusement parks; and we were on a first name basis with every single person at the doctor’s office. In my heart, I sensed the sharp incongruence between what I felt and what I knew was right. Was I traitor to Zach for wanting to be normal?
Looking back, I think it would have helped immensely if there had been one person, who also had a sibling with a disability. Maybe that person could have taken me aside and said, “It’s perfectly okay that you’re having these feelings. I promise, I had them, too, and it doesn’t make you a horrible person.” That would have made an enormous difference.
I want to be that person for someone else, and the best way I know how to do that is to write.
I wrote my children’s novel from the perspective of a sibling of a child with a disability, and I’m hoping that my book will make it into the hands of other siblings who have been wrestling with these same kinds of feelings. I also hope that it will give others a glimpse into what it’s like to be a special needs sibling. My book is intentionally not the depiction of my own story. Instead, I created a fictitious story about a girl who has a sister with Spina Bifida.
I would love if my book would validate siblings’ feelings and show them that they’re not alone. I’d be honored if it would help them navigate through the challenges of life with a sibling who has a disability. Perhaps it might even help them to see beyond what they can see right now.
“Authors do not choose a story to write, the story chooses us.” – Richard P. Denney
Mara's Musings 