- WITS Writer Melanie Malinowski guides Jasmine through a writing lesson during her dialysis treatment at Texas Children’s Hospital.
When I was six years old, I never would have imagined that I would be sick. I have a kidney disease called Lupus Nephritus, an inflammation of the kidney caused by systemic lupus erythematosus (SLE), a disease of the immune system. SLE usually causes harm to the skin, joints, kidneys, and brain. Luckily for me, it did not cause harm to my brain or my skin or joints, but to my kidneys instead. From the time I was six to the age I am now-fifteen-I have taken numerous pills to keep my lupus under control. I have been through chemo-therapy and all kinds of treatments that might help my kidney disease. When everything seems hopeless, I pray and listen to 89.3 KSBJ.
Many songs touch my heart; however, one song is my favorite: “Will Not Be Moved” by Natalie Grant. This song says you may stumble or fall down, but you will not be moved. I can associate with this because this song tells me that I will go through problems, and it will get hard, yet it is up to me to persevere. Without my faith in the Lord and my family on my side, I would not be as strong as I am. When no one is listening, and I am ready to give up, the Lord shows me that He has not forgotten me.
When I was twelve years old, my lupus became out of control, and my kidneys shut down. Now I dialyze three times a week at Texas Children’s Hospital in Houston. In the beginning, I felt like the world was coming to an end. I kept asking myself, what have I done to deserve this? I lost weight, could not keep nutrients down, and was not able to go to school. The doctors thought I would need a feeding tube for nutrients. I was in the hospital for three months. The doctors lost all hope in me, telling my mother that I might not make it. My mother started to pray and put oil on my head. She played gospel music in the room. While listening to the music, I started to have more strength. Later, I was able to keep food down and to gain weight. My labs improved, shocking the doctors, but not my mother and me.
It was a miracle.
I have had countless surgeries. I had a catheter in my chest to do treatments. My sacred body was invaded and painful. With the catheter, I was not able to have a life. The line must not get wet, so when I would bathe myself, I would cover the catheter with shields called Aqua Guards. I did not like it. I have a fistula now, inside my arm. With this, I can do anything. I swim, sweat, and play as I want. I can be normal.
When your kidneys shut down, you are limited to the amount of fluid you can have, and you have to balance your calcium, phosphorus, and potassium. You would think with having to go to school, take my medicine, and do homework that I would have given up, but my song, “Will Not Be Moved,” helps me and motivates me to keep on going.
I must work even harder in school than others, to show that I belong. I try to do work and projects ahead of time since I never know when I am going to be sick. I focus on my courses and study so much. My teachers tell me that they wish they had more students like me who are determined. At school, sometimes I am bullied, but I ignore my peers. I have days where I am sad and happy. I do wish for more friends and to be normal some days. When I am like this, I start to pray and talk to my mother, and she tells me that this too shall past.
Right now, I am on dialysis, but later on I will not be. I will have my kidney transplant, and I will be able to have a normal life. I will be able to go shopping and eat and drink whatever I want whenever I want. Right now, I just have to have faith and know that my time is coming. Just like the song says, I will keep on going and never give up.
By Jasmine, age 13
Jasmine has been working with WITS Writer Melanie Malinowski since age 11. Her essay, “I Will Not Be Moved,” received an Honorable Mention in the Kidney Times.