Do you have a child that has a chronic disease? Do you have other children besides this child? Are you struggling to show both that you love and care for each of them? I know that my mother tried her hardest when we discovered that my youngest sister had an auto-immune disorder.
In early 2008, my youngest sister Paige (who was 8 at the time) began having pains in her joints. In the beginning, everyone wrote the pains off as "growing pains". However, as we got further into the year, the pains grew worse. My mother took Paige to the doctor, who referred her to an orthopedic doctor, who referred her to the Scottish Rite Hospital in Dallas, TX. After running some tests, and doing a biopsy on a discolored spot on my sisters foot, the doctor finally had the answer.
My sister had an auto-immune disorder called eosinophilic fasciitis. It is a rare disease, with only around 800 cases world-wide being in children. It is a "cousin of scleroderma" and will last throughout her life. Steroid treatments were to begin right away. Each treatment would last three days, and they had to be conducted at Scottish Rite, which was 4 hours away from where we live. She would have the treatments once a week to begin, then every two weeks, then every three, etc. The shock was quickly overcome, because plans had to be made in a very short time. My sister Magan and I were to stay with our grandmother while my mother and Paige went to Dallas each week. My father had to work, so we couldn't stay home.
The following months were a nightmare. When Paige and my mom weren't at the hospital, they were preparing for their next departure. Magan and I lived out of our suitcases, bouncing between our grandmas and home. Stress built up and took the form of constant arguments. Tension was high for all of us.
During all of this, it was Paige and my parents that people were concerned about. How they were doing, how they were coping, how hard it must be, etc. No one seemed to notice how all of this was affecting Magan and me. As the weeks went on, we got a routine going, but itstill wasn't home. It was hardbeing apart, but it was also hard being together.I was the older sister, the backbone for my two little sister, and it was because of this that Magan needed me. She had a hard time with living in two places and never quite feeling at home no matter where we were.
The hardest part was the guilty feelings I got about feeling sorry for myself. After all, it was Paige who had this disease, not me. It war Paige who gained 20 pounds in one year, purely from the steroids she had to take. It was Paige who had to endure countless IVs, shots, and take about 7 kinds of medicine a day, not me.My problem was that I had always been her protector. The one she came to when she fell and scraped her knee or was sad. The problem was realizing that I couldn't protect her from this disease. I couldn't kiss it and make the pain go away. So I had to endure hearing her cry from the pain, listen to her whimper in her sleep because even then she couldn't esvape the pain, watch her have to quit doing things she loved, like basketball, because it hurt so bad, stand by helplessly every time she left for the hospital.
You see, the thing you have to remember when your are a parent of a sick child is that it is just us hard for your other children to go through as it is for you. They are as frustrated with what is going on as you are. You have to remember to let them know what is going on. One good idea is to even let your other kids go and see the treatments done. It makes the other children feel like you realize that it's hard for them too. Tell them you love them, and even when you are frustrated and are having a hard time, remember that fighting and yelling will only make it worse. I know its hard, but do the best you can.
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