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For talking about how it feels to be a kid with bladder extrophy and associated disorders, and how it feels to be their parent or sibling. In our own words and for each other.
For talking about how it feels to be a kid with bladder extrophy and associated disorders, and how it feels to be their parent or sibling. In our own words and for each other.
2 comments:
I'm Emily and I'm 7. My brother is Nathan and he has bladder exstrophy.
I don't remember my brothers last surgery, but he does go to the doctor sometimes. I was only 3 when Nathan had his last big operation. I remember that Mom was gone a lot and I got to be with my Grandmas every day.
Sometimes I feel like my brother gets more attention than me. When he has to go to the doctor it's a big deal. Sometimes Mom and Nathan are gone all day and I'm lonely. I want to go with them, but when I do I get bored.
Sometimes I feel bad for him and I wish I could make him better. Sometimes I say mean things to him because he's mean to me. He says that I talk too much and I tell him that he smells bad. I get in trouble if I make fun of him because of his bladder.
I'm not afraid of the doctor, but my brother is. I don't like to be sick, but I do like to go to the doctor. I even like taking medicine sometimes. I like to be the patient. Nathan never likes it. He doesn't want doctors or medicine or anything.
He says he wants to be like everyone else, but I don't know what that means. I think he is like the other boys. They're all mean to me sometimes and other times they let me play with them.
Siblings often fight. I had fights with my brothers and sisters. But it helps to be considerate of someone who has a condition that is hard to control. Please don't tease. If you must retaliate from something he did or said, keep it away from the sensitive side of what he has to deal with. It's not easy to live with. You and he can consider yourselves as being in a fairly normal situation, although exstrophy can keep one a bit depressed--or a lot. Most of us are sensitive to our condition and intentionally reminding him of his condition can hurt deeply. Like Nathan, I needed to feel normal. When I went to school I was with the other kids and needed to adjust to the difference since I didn't have any real problems at home. My brothers and sisters didn't know very much about my personal difficulties until we became adults. That's when personal information among family members doesn't matter so much. In school, I was not quite like the other children. I had to do things differently and I felt left out in personal ways. Now, as a grownup, I know I didn't need to feel that way, but how does a child know how to handle his emotions in the face of obstacles he can't seem to get a grip on. Nathan needs to be encouraged. Take care of him even if he's older than you are. I had five sisters and two brothers and I was seldom picked on for my limitations, and I'm the oldest. I was picked on for having all the toys people gave me because I was in the hospital so much. That's a normal part of sibling rivalry. And yes, my parents paid more attention to me at times. I needed their help, and they wanted to see that I had what I needed. Otherwise, I was treated the same as the rest of my brothers and sisters.
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