I realized I promised someone I would post a brief history but never did it (thank you ADHD). Yesterday while cleaning off a shelf, I ran across the speech that Marty and Bella gave for the Arthritis Foundation in October 2010. It pretty much sums up the beginning of our journey.
Marty: Two years ago, our life was pretty good. I played baseball, basketball and football, and Bella was in choir and student council, and was a cheerleader. Then everything changed.
Bella: We all got sick, and our mom and I got better, but Marty didn’t. He ended up in the hospital and a few weeks later was in a wheelchair because he hurt so bad.
Marty: I couldn’t walk or do anything, and sometimes I couldn’t even get out of bed it hurt so bad. I missed a lot of school. A couple months later, my chest started hurting and I had to go back to the hospital.
Bella: The second time he was in the hospital I was really worried, especially when he was in ICU. Before that I didn’t even know what ICU was. It scared me that he had trouble breathing, and sometimes I wondered if he was going to die.
Marty: I don’t really remember much about being in ICU. I just remember I was scared, and it was hard to breathe. I had to start getting a shot every day that really hurts. I still have to get eight shots a week.
Bella: I felt neglected because I couldn’t spend as much time with my mom, since she was at the hospital with my brother. I had to sleep in random places, like at a friend’s house. It was hard to think about school with all that going on.
Marty: I finally got better but then my cheeks were all chubby from the steroids and my friends didn’t even recognize me. It was hard to get caught up in school, and I had to go to summer school.
Bella: I felt kind of embarrassed at school when I pushed Marty in the wheelchair to the nurse’s office. Everyone stared at me and kept asking questions and it made me want to cry sometimes. All of the sudden I wasn’t Bella any more, I was the girl whose brother had arthritis.
Marty: It was kinda cool when the Arthritis Foundation helped us go to the national conferences in Houston and Philadelphia. Our mom said she learned a lot, and it was fun meeting other kids with arthritis. Last month they had a conference at Great Wolf Lodge and that was way cool.
Bella: That was cool, but I would give it all up if he didn’t have arthritis any more. The good part was I finally met other kids that had a brother or sister with arthritis, and I didn’t feel so alone any more. Finally nobody was saying, “Hey, aren’t you that girl that has a brother with a disease?” That made me mad because it’s not a disease. It’s an illness, and it’s not contagious.
Marty: Now I can play baseball again, but sometimes it really hurts. I can’t play basketball or football anymore. My wrists and feet bother me a lot, and my knees are all swollen.
Bella: I hate that we can’t do the same things we used to do, like play games or take the dog for walks, or play outside. Either he’s hurting too bad, or we don’t have time because of how much time the arthritis takes away.
Marty: It takes a long time for me to get ready for my shot every day because I know it’s going to hurt. I know my mom gets impatient with me sometimes, but I just can’t help it. I wish there was some way to make it not hurt so much, but the medicine burns bad.
Bella: People need to remember that arthritis affects the whole family, not just the person that has it. Sometimes he hurts at random times right before we’re going to do something, or he gets tired really fast and we have to stop whatever we’re doing.
Marty: I still miss a lot of school, either because I just hurt too bad, or because it takes me longer to get well when I’m sick. It’s hard to keep up in school, plus I don’t like not being able to see my friends.
Bella: My mom and I don’t have as much time together because it takes forever for Marty to get ready for his shot every day. Plus she has to take him to the doctor all the time, which also takes time away from me.
Marty: We can’t play the same as we used to. Like we used to wrestle, but now it hurts too much to do that. Sometimes when we play, Bella accidentally gets too rough and hurts me.
Bella: I feel really bad about it, but that doesn’t make him stop hurting. Sometimes his arthritis wears him down and he has to lay in bed when I want to do something with him.
Marty: I don’t want to admit that I can’t do what other kids do, and I want people to treat me the same as everyone else. If i didn’t have this, I would have more time to play, and my mom would have more time to do whatever it is she does.
Bella: Sometimes he starts hurting all of the sudden and we can’t do what we thought we were going to do. I used to think he was doing that to get attention or get out of doing chores but now I know better. When we’re shopping at a store and I’m buying something, he might ask me to hurry because he’s hurting. I try my quickest, but it’s usual for me to take forever to decide. Just ask my mom.
Marty: My hero is Josh Hamilton because he got sober from drugs and alcohol, and never gave up. He didn’t quit, and he reminds me I can’t quit either. We all have to keep working to help find a cure and better treatments that don’t hurt so much.
Bella: I wish I was grown up now so I could try and find a cure for arthritis. I hope by the time I am an adult that they already have a cure and maybe I can work on something else. If not, I at least want to try and find better medicines that don’t hurt so much, like being able to take pills instead of having to get a shot every day. Either way, we need more scientists working on this, because even one kid with arthritis is too many.
Both: Please support the Arthritis Foundation so they can help kids like us.