It’s hard, because you know, I’m sixteen and I’m still in pull-ups sometimes when I’m sick! And it’s rough. But I don’t know. It’s hard, but again it’s just something I have to deal with, and if I want to avoid it, I have to take my medicine and cath and do everything to keep myself from getting sick.
Elizabeth, age 16
The one that could make me smile
Isaiah: My niece was like my best friend when she first was born because she was always over my house.
Mom: She came to a few appointments with him and drew pictures for him while he was in the hospital.
Isaiah: Around the time she was born, that’s when I was getting real sick – I was like ten. And that’s the time I isolated myself from everybody. And she was the only one that could make me smile and she was the only one that I really spent time with the most.
Isaiah, age 17, and mother
There’s nothing I can do
Sometimes I do get frustrated, but other times I’m just like, “This is just how it is, and I’ll just feel crummy for a couple days and then get on with it.” I know there’s really nothing I can do about it, and there’s really no way I can fix it.
Jenna, age 16
I just accepted it
It was very stressful. I just kind of accepted it, that’s how I dealt with the stress – just accepted it, and you know, I always tell myself there’s other people out there that are worse off than me, so I should just deal with it. That’s how I feel.
Alexa, age 16
I think it gets easier the older you are. You don’t have those social pulls. You’re not as active, things slow down a little bit more, you get into more routines when you get older. So now at work, I do have a bathroom schedule. I guarantee you have a bathroom schedule – I mean everyone has this, they get into routines, they know when they do things, and that’s no different for us.
Sam, age 32
Can’t get my mind off it
I’m not like the other kids at my school. I never like that feeling, never!
When I was little I pretended that I didn’t need to do the tube. That worked for five minutes, not for long…I still can’t figure out how to get my mind off it.
Ellie, age 8
Try to keep busy
Dad: We talk to family members over the phone to India. So that’s I think one area. And we try to keep busy. She’s learning keyboard, and other activities. We go to our temple every Sunday, so that kind of helps keep her mind off. So try to keep busy.
Jaya: I try distracting myself and trying to do something else that will get my mind off it, but sometimes I can’t. Mostly I distract myself easily…another way I distract myself is to play with my brother, play a game.
Jaya, age 8, and father
Somebody else who has the same issue
At Boston Children’s Hospital, at one of the check-ups, we met this other kid who actually kind of lives a little near us and we talked and they were thinking about using catheters and he wasn’t really sure, so since I was already using them, I just said that I’d talk about it. I said some things about it – that it doesn’t hurt at all, and it’s easy, and that you should because it helps.
And a few months later we got together again and we invited him over for dinner and stuff, and it turned out he was using catheters and was okay with them. I’m happy that it worked, and well, I kind of liked talking to somebody else who kind of has the same issue as me!
Henry, age 12