Our son, Sraya, recently participated in the Pen 2 Paper writing contest held by the Coalition of Texans with Disabilities. Sraya won honorable mention in the contest. Laura Perna, who ran the contest, wrote this to him last week, “Sraya, you were the youngest entrant to the contest, and I want to show people that a person's age doesn't keep them from writing maturely and candidly about their life and disability. I hope you'll continue to pursue writing as a craft!” Here is Sraya’s essay, which Laura wrote to me previously, had a “voice” that she felt was more mature than many other entrants.
I’m a Winner by Sraya Gruber
Hello, my name is Sraya and I am nine years old. I am also visually impaired. I am going to write about my other disability, which is the pain in my feet. I was born with flat feet. When I was little, my parents took me to the doctor. The doctor said that I would not have any problem with my feet. I guess he was wrong.
Last year, in 2009, during the school year, my feet started hurting. I had problems running in P.E. I also had problems walking home from school. I even started limping.
The pain made me feel angry and frustrated. I tried to fight it, but it hurt so much. I always came home from school sleepy and tired. When I would do homework I liked when my mom would massage my feet because they hurt. Sometimes I even liked taking long baths after school.
Before the school year ended my parents took me to the pediatrician. He sent me to do blood tests to check if there was something serious that was causing the pain. I was frightened during my first blood test, but I did not cry. My mom told me to imagine that the needle was an airplane, crashing into my arm. The results came back normal.
My dad took me to the orthopedist. The orthopedist said that I did not have flat feet. However, he said that I have an abnormal gait, which meant that I don’t walk properly, rather I walk on my tiptoes. He thought that I have a neurological problem, meaning I had a problem with my nervous system.
In the summer, I went to Sea World in San Antonio with my family. I had to walk a lot there from place to place. After a while my feet started to hurt. My mom had to give me a piggy back because I could not walk any more.
When we came back home, I could not walk. I had to hang on to walls and chairs. Sometimes I had to crawl in order to get to places, like my room. Baths with warm water did not really help my legs.
During the summer there were some programs in school, called “Book Club” and “Mighty Minds”. I liked going there, but my feet kept hurting, preventing me to walk there. When we went there, we had leave the house thirty minutes before, even though the school was only five minutes from where we lived. We had to walk slowly. We also had to stop for some time so I could rest. Sometimes mom had to carry me there.
I was afraid I would not be able to walk properly. Some days I cried because of the pain. My feet sometimes felt as if they were going to “fall off”. Sometimes I felt that I did not care if I could not walk anymore. I was very sad.
My parents took me to the neurologist. He asked me to do different exercises. He said many different words that I did not understand. He said that I might have a problem with my central nervous system, or the muscular system or something metabolic with the cellular level activities. It meant that something was wrong with me.
For me it meant more tests. I had lots of blood tests and an MRI of my brain and spine. Everything turned out to be normal. I hoped that I would not have to do more tests. I thought I would turn into a human pin cushion.
Then we went to see my pediatrician. He said that maybe I could get skates so I would not have to walk a lot. My mom got me shoes with skates, but it did not work out too well. I was always afraid that I might fall.
I was sent to do an MRI of my pelvis. The radiologist, who checked the image, thought that I had a problem with my bone marrow, so I was sent to the blood cancer center to see another doctor. This doctor sent me to do a bone scan and a bone marrow biopsy.
After my bone marrow biopsy, I was very sleepy, because they used general anesthesia. I had two bandages on my back to cover the places where they took out pieces of bone and bone marrow. I could not even take a bath for few days. Everything came back normal.
On the first day of school, instead of going to school, I had to do a muscle biopsy and EKG. When I woke up, I ate popsicles that the nurses gave me. My dad let me listen to music on his I-pod. My dad said that when I woke up I asked him, when they would do the biopsy. When the results came back, it showed that everything was normal.
The neurologists said that they don’t have any explanation, as to why I can’t walk properly. My pediatrician sent me to do physical therapy and to see a rehab doctor. The doctor said it was important that I walk straight, so I would not hurt my spine.
Doing physical therapy means that I am doing different exercises to help my feet get stronger. I ride a bike, do muscles stretches, lift my legs, and sometimes practice walking on the balance beam. There are some exercises that my mom does at home with me before I go to sleep or when my feet hurt.
My dad took me to see Mr. Spencer, who works at the hospital, to make me leg braces and knee splints. Mr. Spencer put plaster that you make a cast with on my feet, so he could measure how big my feet were. He also traced my body from my hips down to my feet. I have braces for walking during the day and knee splints for the night.
During spring break I got my knee splints and braces. Mr. Spencer taught me how to put them on. I also have special socks for the braces. After you put your feet and legs inside the braces, you have to wrap velcro around the feet, and then wear your shoe on the braces. I did not like wearing my braces at first, because I was afraid the kids at my school would make fun of me.
My mom tried to cheer me up. She said that Alice Roosevelt also had to wear braces on her feet. She also said that I could look like Darth Vader, because the braces are black.
Today it does not bother me to wear them, because they help my feet by making me step on my soles and not just my tiptoes. Some kids have braces on their teeth and some kids have braces on their feet.
I wear the knee splints, when I go to sleep. I must wear shorts when I put them on. It makes me hold my legs straight when I am asleep. There is also a motor inside to stretch my muscles. If I don’t wear them at night, I wake up crying with pain.
I think that PT and the braces have helped me get better. On days I go to do PT, I feel my feet hurt less and they are stronger. I still can’t run, walk faster, bend my feet or back, or pick up things from the floor. But, I can still walk to school and back home on foot. I don’t need a wheelchair, like one of the doctors thought I might.
This summer there is “Book Club” too. This week, we learned the word perseverance and its meaning. The teacher said that I was an example for perseverance, which means that I did not give up. I felt proud of myself, because even if it hurts, I keep doing and giving what I can. It means that I did not pout and say “I can’t do it” and feel sorry for myself. I’m a winner and not a quitter.