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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.
3 comments:
I hate going to the doctor. I get really scared. Mom says it's because of surgeries when I was too little to remember. It sort of helps me to know that because I don't have to be embarrassed about being afraid anymore.
I hate exam tables and dentists chairs. I don't remember any bad things, but when I'm in a doctors office I think something bad will happen. I don't want to lay down on the table for them.
I think the doctors should have taken more time with me when I was little to make sure I wasn't scared. They should have tried harder to make sure I didn't hurt. They should always let the Mom and Dad hold their kid's hand.
I wish I could tell the doctors that kids remember. I remember being scared and I remember being hurt. I can't remember why, but I do remember. Some of my doctors take time and try hard to make me less afraid now. They should all do that.
I like my doctor. I will say thank you to him for taking good care of me. Some things hurt but it isn't his fault and he tries really hard to never hurt me.
I don't like to go to the hospital because I don't get to see my friends and I don't have my own bed. Sometimes I'm afraid of what will happen and how bad I will feel but mostly I'm only there for the day. Mom and dad are always there with me.
My doctor is a very nice person.
I wish we didn't have to wait so long in the waiting room!! The last time I went to the bladder doctor, I must have waited more than two hours!
Mom always asks me to wait to pee until we go to the room so that I can give my sample to the nurse. I don't think they ever think about how hard it is to wait when you have to go all the time. I tried, but I couldn't wait.
Another thing about it that bugs me is that the nurse doesn't get why I can't fill the cup! It seems like mom has to explain the same things every time we come. It doesn't seem to me that it should be so hard to understand.
I get that sometimes the doctors can't do anything about the painful stuff that has to happen, but it's this kind of stuff that really bugs me to death.
And guess what? That last time we didn't even get to see the doctor! He rescheduled after we waited. That was a real pain to have to leave school and waste a whole day worrying about having to pee and then having to do it all over again another day!
I don't know. It's a big deal for us when we go. I can get scared and Mom tries real hard to make sure I don't know she's scared too. She'll read and I'll play my games to try to keep from worrying. I don't think the doctors and nurses really get how hard that can be sometimes.
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