I love the color red. Red is a strong and vibrant color. It’s the color of love; of the tomatoes that are in my favorite food, pizza; and of the noses of the clowns who visit us at hospital. It’s the color of the traffic lights that indicate cars should stop. It’s the color of blood coming out of my veins every time I need to do my exams in the hospital. Maybe that’s why – while most other girls like pink, red may be my favorite color because to me it means life.
Life has already provided me with 11 laps around the sun. I was born in Olinda, a city in Brazil famous for having one of the main carnival festivals in the country. But I live away from the cheerful blocks of the carnival, on the second floor of a house in one of the poorest neighborhoods in the city. Many people are afraid to come here, because it is also home to countless criminals and criminal factions. I’m grateful to God that this didn’t prevent Pastor Rubenildo and his wife, Rosangela, our project director, from planting a church in our neighborhood. And I’m grateful it didn’t prevent its partnership with Compassion.
When I was 5, my mother’s best friend, Aunt Betânia, told her about the Compassion project. Betânia’s daughter, Tainara, and I have known each other since we were born, and we also became best friends. She has always been my adventure partner. Even though our neighborhood is a rather dangerous place, we were not afraid to jump over the walls of abandoned houses seeking adventures through the streets. We used to go to the project together and had fun with the project activities and with everything we learned there.
However, the red color of the traffic lights signaled for me to stop when I was only 7 years old. The doctors said that I had cysts in my ovaries, and I had to undergo surgery to remove my ovaries and my uterus. Although, at that time I didn’t understand the purpose they served. Shortly thereafter, I discovered that I had a tumor in my spine. That tumor took many things from me.
First, it took my ability to walk. Running freely through the streets of the neighborhood is no longer a reality for me, only in my best dreams. In those early days, the only thing my mind could produce was nightmares. One day I woke up and there was a blue and pink wheelchair in my room. The chair wasn’t from someone who had forgotten it. They said it was mine. But I didn’t want that chair. I didn’t want to sit on it. I didn’t want to accept that it would be my means of transportation from then on. I preferred to be carried by my mother or in doctors’ arms than to sit in that chair and admit that I couldn’t walk anymore.
The tumor also took the joy of my mother and my grandmother. They never cried much in front of me. They held their tears while I cried like a baby. But I knew that when they went out to go to the bathroom or to the next room, they would let the tears flow to comfort their pain. We always lived a tough life, and my situation made things even harder. My mother’s arms were already tired. I agreed to sit in the wheelchair.
The tumor also took my hair. While taking chemotherapy medications, I saw every strand on my head go away. My days at home were exchanged for long seasons in hospitals. I stayed away from my friends and the Compassion project, but our director, Rosangela, my teachers, and my best friend, Tainara, always visited me when possible. In the hospital, I met many other children like me, and some of them are already living with God.
My treatment lasted about a year, but in my head it took centuries. After that I returned home and to the project. My legs still didn’t let me walk, and I was a little ashamed to meet my old friends again.
Since I don’t feel my legs, I use a catheter that meets my physiological needs three times a day with my mom’s help. The rest of the time I use diapers. What if the other kids laughed at me?
When I arrived at the project I discovered they had changed my classroom to the first floor, so I didn’t have to go up the stairs. They had also adapted our old bathroom to my new needs. My sense of fear turned into gratitude and joy, for I felt special – not that I was different, but that I was loved.
My project friends were happy to see me. No one laughed at me. Despite my limitations, they didn’t exclude me from the games, but they adapted some of them so I could play. Tainara pushed my chair, and we raced with the boys. Sometimes I would forget that my legs attached me to that chair. My limitations have given me a new kind of freedom. It’s the freedom that only a great friendship can provide. It’s the freedom to be loved despite our differences.
It was good to go back to school and the project. Every day my teachers reminded me of how good God is and how He cares for us even though sometimes things happen to us. I am grateful for my friends and my family. In our neighborhood I see many mothers who don’t take care of their children; some of these children spend days without bathing and receive no care. My mother and grandmother, however, have always been by my side. This was also a demonstration of God’s love for me.
I started doing physiotherapy, and the doctors said I could walk again. Gradually my life returned to what it was before. My hair grew again and filled my head with curls. Once again, I could venture out on the streets with Tainara and my younger brother, Kauan. My mother always worried about my health, but my brother used to help me down the stairs of our house and run away from home to play with the boys in the neighborhood. The traffic light seemed green for my life.
But it didn’t last long. Soon it became yellow and red again. Earlier this year, doctors said I had new tumors in my lungs and my breasts. I didn’t understand why it was happening in my life. I didn’t want to lose my hair again, nor take the medications from the hospital.
Weeks later, I was once again lying in an operating room watching the ceiling lights while the doctors pierced my skin for anesthesia. When I woke up, there was a cut in the middle of my chest, but I was alive to smile at my mother one more time. In the weeks that followed, I started my chemotherapy sessions and lost my curls again. I’m still bald.
I cut the hair of all my dolls so they look like me, but playing alone isn’t cool. As I’m still doing my treatment, I can no longer go to school or the project. When I’m not in the hospital, I spend my days at home. Our house is small, and there’s not much to do. I wait all day for my brother and Tainara to come back from school so they can take me to play in the street. My dream is to have a toy car that allows me to walk in the street and not need my friends to push me. For now, I imagine my chair is my car, and I even glued a car ignition on it.
Sometimes I spend the afternoon watching horror movies at my grandmother’s house. People ask me if I get scared, but movie monsters don’t scare me. Life and my future sometimes frighten me so much more.
I wanted to be a cop and arrest bad men, but when people look at me, even if they don’t speak, their eyes say it would be impossible for me to chase after criminals in a wheelchair. Maybe I’m like the bunny Judy Hopps from Zootopia. I could also be a nurse, like the ones who look after me in the hospital. At least I wouldn’t need to run, and I know almost everything about drawing blood and giving injections. Tainara and I are trying to raise money to produce and sell popsicles, but we still have no money.
On my loneliest days, it’s amazing to receive my teachers from the Compassion project. They’re constantly concerned about my health, and whenever possible they include me in the outings they plan with the other children. Last month we went to a water park, and I had a lot of fun with my friends. My mother doesn’t like to worry me, but I know the project also helps us with the medicines that the hospital doesn’t offer us, and when she has a hard time buying food for the week.
I really don’t understand why God allowed me to get sick again. But I know He is good, and I believe that He will help me live a good life, regardless of how many decades I’m gonna live. At the Compassion project, my teachers teach me that I need to believe that everything will be fine. From time to time I have some relapses and need to go to the hospital, but it’s good to know that there are a lot of people cheering for me. My family and my friends have never left me, and that is why if someone asks who I am, I don’t let their eyes grieve when they look at my bald head. I answer:
Hi! My name is Kauany, and I am a happy, smiling girl.