A Different Kind of Pain

19 3 4

For the first six years of my life, I saw the world through a haze of mythical creatures and iridescent colors. My imagination swirled around me like a protective bubble. The negativity of life was safely stuck outside of my pattern. I loved school. I loved my family. I loved every aspect of life. I couldn't wait for each new experience. I was seven years old and I knew everything.

Then I entered second grade. My life rapidly went from exceptional and logical to painful and confusing. I still had great parents who loved me and little brothers to explore with, but I started to hate school. I had never hated anything before. It was a new feeling and it terrified me to the core.

I remember walking into that Lysol-scented classroom. I remember smiling and laughing and enjoying my friends. I also remember the tears. I cried daily. I didn't want to. I couldn't control it. Every day a torrential downpour came out of my eyes. The work no longer made sense to me. The other kids would set down their pencils and I would be halfway done. I had always been told I was intelligent but the evidence no longer supported that. The smart kids always finished their work. The smart kids never got frustrated and they never cried.

"Daisy, you're not stupid," my mother's voice still rings clearly in my mind. "You are different and we're going to help you."

I didn't want help. I wanted to be me. I wanted to climb trees and play in in the dirt. I wanted to create a world for my brothers and I to live in. I also didn't want to be different. I wanted to be just like the other girls. Each day I would receive my green and blue handwriting book with its brightly colored pages and its swirling lines of second-grade cursive. I swear it was mocking me. The chicken scratches my teacher swore were letters were making less and less sense to me.

I didn't understand what was going on. My life was spinning out of control. I went to my mother sobbing hysterically. She looked incredibly sad as she watched me suffer. In her amazing, gentle way my mother calmed me down. She again explained to me that I was simply different. There was nothing wrong with me. I nodded my head and did my best to make my tear-stained face placid. I wanted to believe her, but I didn't.

The next day I went to the Pittsburgh zoo with my family. My brother Sander and I ran around the zoo like monkeys. We excitedly admired exotic animals and discussed the intricate patterns of their coats. My youngest brother, Oliver, who was four at the time, didn't say a word and never left his stroller. He couldn't. He was born with a rare set of genetic anomalies that made it impossible for him to have a normal childhood. He was disabled in every meaning of the word, but he was perfect. He was a beautiful little boy with cherub-like chubby cheeks and a giant mane of fluffy brown hair. His lovely features weren't the only thing that set him apart. He had facial palsy and a tracheotomy. Anyone with eyes could discern that he was different. I, however, never saw it until that day.

A little boy with red curly hair came up to me. I had noticed him looking at Oliver but I thought nothing of it. Then he pointed a grubby finger at my baby brother and blurted out.

"What's wrong with him?" His tactless words rang in my ears.

"There is nothing wrong with him," I stuttered back. " He has CHARGE syndrome." The boy looked at me uncomprehendingly. Then out of nowhere his mother swooped in and grabbed him by the arm. She barked something about being rude and they were gone.

I was baffled. For the entire drive home I studied Oliver's precious face. As soon as we arrived home I ran to the bathroom. I studied my own reflection. Was it true? Was there something wrong with him? There were obvious differences between us. My eyes were pale green and his were chocolate brown. His hair was dark and fluffy and my hair was pin straight and blond. Then I looked closer. I began to notice the details everyone else saw. One of his handsome dark eyes was slightly smaller than the other. One of his tiny ears stuck out at a right angle. The more I thought about it the more concerned I became. He was four years old and he had never walked. Other four-year-olds were already running around on their stubby legs.

This realization buzzed inside my skull for a couple of days. Finally, I decided to seek out my mother's wisdom. Shaking, I went up to her and asked the question burning at the back of my undeveloped mind.

"Mommy, is there something wrong with Olly?"

"Baby, Olly has CHARGE syndrome." She answered, "You know that."

"Yes," I cried. "But, is there something wrong with him?"

"Life is going to be harder for Oliver because he is different. He is very smart and he will learn how to overcome his disabilities and live a full life," she explained calmly.

Then the realization hit me. Oliver was different and I was different. I didn't always do well in school but no one stared at me. I didn't have rude boys point at me or people steal a second glance my way. Oliver, however, would have to deal with that his whole life. That feeling that rose up in my stomach when I didn't understand something. Oliver might someday face that while simply trying to order a meal.

I was furious and shaken. I didn't want to live in a world where pain was the eminent result of being unique. I was a little girl with undiagnosed dysgraphia facing an uncertain future with a little brother who would never blend into a crowd. Despite my anger at the injustice of life I began to understand and recognize the beauty of being different. Oliver was still perfect and precious and wholesome. If he could be so radically different from everyone else and still be the definition of angelic adorableness then I could be different and still achieve an excellent life. This realization was the only thing that got me through second grade. 

Becoming Pretty- PoetryWhere stories live. Discover now