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I Did It for My Mom
Johileny Meran
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The noise was everywhere, and I couldn’t wrap my head around it. I was usually impressed by the capacity of the nurses, doctors, and orderlies to get to everybody in the emergency room. I had spent my childhood in hospitals; I was diagnosed with cerebral palsy when I was a baby.

But that day was different. I wasn’t fascinated by the atmosphere, and I wasn’t the patient this time.

We were there because my mom had had a bad headache on and off for a week. I was anxious to know what was going on, yet I wanted to go home. Being in an emergency room from morning to afternoon was not what I wanted my Christmas break to be about.
I looked at my mother’s face and saw that she was worried. The doctor came to her bed. He started talking, but my mother stopped him. She looked at me, signaling me to speak for her.

“My mom doesn’t speak English,” I said. It came out naturally, a phrase I had repeated many times since we’d moved to New York from the Dominican Republic (DR) four years earlier.

“Nurse, is there someone that can translate here?” the doctor asked.

“Not at the moment,” someone responded from the other end of the room.

He looked at me and slowly said, “Tell her that the results from the CAT scan show that she has a brain tumor.”

As I struggled to translate his words, I could feel how from that moment on everything would change. I was 12 years old. I didn’t know what “brain tumor” meant but as soon as I explained it the way the doctor said, I saw tears form in my mother’s eyes.

“Cancer?” she asked in English.

“We don’t know that yet,” he said, and I translated. After that, my translating was automatic. I didn’t think; I just spoke and tried to hold back my tears.

My Rock and Protector

I recalled the thousands of times I had cried in her arms. She was my rock and protector. She knew me like no one else and believed in me when no one else did. When I first started school in the DR, everyone assumed that because I had a physical disability I also had a cognitive disability. But there was nothing wrong with my mind: I loved reading and learning new things.

My mom fought with school officials for me to be given the opportunity to learn like others. At one point she had to go to the Board of Education office because the private school she wanted me to go to didn’t want to accept me because of my disability.

image by YC-Art Dept

This was one of the many battles she fought for me. The DR doesn’t have a law like the Americans with Disabilities Act, which demands that kids with disabilities get the help they need in school. So what the school was doing wasn’t illegal. However, that didn’t stop her from demanding that I get the same education. In her eyes I was like any other child and yet unique in my own way.

When I was 8, my mom decided to take me to the U.S. for surgery on muscles and tendons in my legs. The doctors told me that the surgery would help me walk better. They had been impressed with how quickly I had developed my ability to walk with just a walker and leg braces. And so they had nominated me as a perfect candidate to get the surgery. Everything indicated that it would allow me to walk without any mobility aids.

An Irreversible Mistake

But when I woke up from the operation, we discovered that the doctor had accidentally damaged a nerve. I walked into surgery using a walker, but because of the doctor’s mistake, I left in a wheelchair.

It was hard to comprehend. Why had a surgery that promised to make me better made me worse? Suddenly I was thrown onto a whole new battlefield. I would have to learn to use my walker all over again. My dreams of running around the park with my brother were turned into the nightmare of being stuck in a wheelchair.

I was disappointed and in pain; both physically and emotionally. I couldn’t bear sitting down all day. I would cry every time I had to get back in the wheelchair.

My mother had married someone soon after we arrived in New York, but she was still always there for me. That made me feel loved, which inspired me to keep trying. It was hard to watch her struggle to get me outside to take the school bus. She would buy me puzzles and other school materials to keep me focused on learning and forget my frustration of being in a wheelchair.

I also had to adjust to a new country, but fortunately learning English was fascinating. That helped keep me from getting depressed because I was so focused on learning that I forgot everything else. As time passed I was able to adjust to living in the U.S. I became fluent in English, I made friends, and I learned how to take care of myself with the help of my mom.

Our Roles Were Switched

Everything changed after we got her diagnosis, four years later. By then I had learned how to maneuver myself in the chair while learning how to use a walker again. When she got her prognosis, her husband left. I guess he thought it was too much.

Suddenly, my mom’s and my roles were switched. I already translated for her, but now I was also taking care of her. And with her husband gone, I was the one to talk to her doctors to find out what the next steps would be. I had a feeling she didn’t want me to have to do that. But she didn’t want to keep me in the dark either. My days were suddenly structured around her needs. I would go from school to the hospital and then home or to my aunt’s house.

For the first time, I was the one telling her that everything was going to be OK. But I still needed to hear that I would be OK. That the surgery was a minor setback from a major comeback. That I would get up on my feet and walk like I used to and that no matter how hard it was, I would excel and make it far.

I especially needed to hear that last thing. I was so focused on trying to be strong for her that school took second place. It was a choice I didn’t make consciously, but it happened. I was so worried that each day would be my last day with her that I couldn’t focus on school. Although I did my homework, my grades still dropped from all A’s to D’s and F’s in 6th and 7th grade. I became frustrated with everything.

image by YC-Art Dept

At the end of 7th grade my grandmother and brother came to the U.S. It was a relief to have them close, especially my brother. At first, we had to adjust to one another again and re-learn to be siblings, but we grew closer as the time passed. That summer, 20 months after her diagnosis, my mom lost her battle to cancer.

My brother and I were left in my grandmother’s care. In the weeks that followed we all moved in with my aunt, but the apartment was overcrowded. I’m not sure exactly what happened, but my brother had a problem with my cousins, and my grandmother made a decision to move out, which she thought was best for us. She and my brother and I ended up in a homeless shelter.

Like Mother, Like Daughter

The first day of 8th grade, I woke up crying in the shelter because my mom wasn’t there. It had been less than a month; I was still trying to get used to her absence. Yet as I tried to calm my sobs, I could hear her voice telling me that I had to keep going.

I was 7 years old again and she was preparing me to go to school. I remembered her telling me that there were going to be teachers who would ignore my raised hand or wouldn’t give me the chance to participate, but that I had to keep trying. One day they would realize what a terrible mistake they were making by not giving me a chance. Then she gave me a hug, but I couldn’t feel her warmth because it was just a memory of her. I was back lying in bed on the day before 8th grade. I was in a shelter, and my mom had passed away.

That’s when I got the strength to get up and get ready to go to school and give my best because that is what she would have wanted.

Soon after my mom died, my grandma asked me, “What do you want to be when you grow up?”

Back on Top

“I want to be a doctor.” That is still my goal. Even though I was angry at the doctor who harmed me, over time I grew to respect the ones who helped me. I want to provide the same kind of help to others, to give back.

My grandmother laughed and I was a bit upset until she said, “Like mother, like daughter.” My grandmother told me that my mother had wanted to be a dentist. She had even started school for it, but then she became pregnant with me and quit to take care of me. Those words only pushed my desire to a greater level because not only would I be fulfilling my dreams in the future but I would also be completing hers.

Obstacles kept coming my way. It wasn’t easy to focus on school while living in a shelter, but I pushed myself by remembering how hard my mother had worked to make sure I got the same opportunities as other kids. I also thought I owed it to her because she always wanted me to be happy and learning made me happy.

By the end of 8th grade my grades were back on top. And they’ve stayed there; I am graduating as the valedictorian of my high school class and will attend New York University.

I have come a long way, and being different doesn’t prevent me from being successful. Every time I feel like giving up I think of my mom’s journey and mine. It pushes me to go on. And as I go on, I’m pushed further thinking of all the other kids with disabilities who are shut down because they are different.

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(NYC-2015-09-03)

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