The teasing happened before the diagnosis – especially in the summer, wearing the protective wear. That’s embarrassing! He wanted no part of it. It’s not supposed to look like that, you know? So we tried to do this, we tried to do that, but Pampers didn’t work, the protective layer was not working, so we sort of would try to keep everything hidden… You know, he can still go places, he can still go swimming, he can still play hockey, he can still play basketball. You have to be a little more careful, but he’s adjusted pretty well. Everyone helps him out.
Mother of Manny, age 10
Sometimes I have trouble with my pee!
That was his way of life and he didn’t get embarrassed until Mommy made the mistake of putting a pull-up in his backpack. Nobody’s going to see each other’s backpacks, but when he couldn’t find his water bottle that his mother forgot, he invited other people to look in his backpack. They saw the pull-up and they just started laughing at him – these were good friends! In their defense, they didn’t know any better. I mean, what do you got a diaper in your backpack for? You can’t blame the kids! And I have to give my son credit, he’s a very strong person, and he just looked at everybody and said, “Sometimes I have trouble with my pee!”…
He knows that he’s different. One of his first days of preschool, they had a cut-out of a person and they had a big lesson with a poem – basically, everybody’s different. And the different thing that he did on himself was he drew a belly button.* So he knows that he’s different. He doesn’t know that we cath him, because it happens when he’s sleeping, but when I flush him with a saline solution, that’s when most of the questions come up, because he’s getting older. When you try to describe to him, “You do realize not everyone goes through this?” he’s like, “Really?” So it has to become a reminder.
Mother of Jared, age 6
* Editor’s note: Jared has a stoma in his belly button for catheterization.
He wasn’t quite ready
One time he did get invited to a birthday party and I wouldn’t let him go because it wasn’t a family we would be comfortable with, with this situation. I would be comfortable with him sleeping over there, it wasn’t that – it was just we weren’t ready to share that information, they weren’t that close. So I wouldn’t let him go, because that means he would have to cath and irrigate twice and then do the cathing, and he wasn’t quite ready then. And we did have an incident where he went to a birthday party and he was supposed to cath and he didn’t. When I picked him up he was wet on the outside, so. And I don’t think anyone noticed because he had a t-shirt on untucked, but, you know. I’m like, “Eric!!”
I think he understands why he has these limitations, why he can’t go to sleepovers. He understands that even though it might be frustrating…I’m sure he’s disappointed but it’s not a nonstop struggle because there’s no choice.
Mother of Eric, age 8
Too young to really pick up what was happening
She has had people ask questions but she has never been teased about her meds or when she was having to wear diapers longer than the other kids. She just hasn’t experienced it.
Her peers were too young to really pick up what was happening. Adults were the bigger issue and still continue to be the larger issue. Her one-on-one aide at the school gave us way more assistance then we ever needed on how to get to the root of the problem. I mean, we have gotten advice and now I kind of turn a deaf ear.
Mother of Amalia, age 9
Mother of Elizabeth, age 16
He’s really blossomed
Right now he’s in a group with friends and people that understand him and he can talk to, so socially right now he’s at his best. Because he’s not in pain all the time, he’s comfortable, and he knows what he can and can’t do.
So socially there are some good things. He’s made a lot of progress, and I always tell him he’s a keeper, I would never trade him in! He does so many good things. He’s got a personality – he would help absolutely anybody do anything. We do Special Olympics with him and we went bowling, and I had a couple people come up and tell me he was absolutely wonderful…socially he’s really, really blossomed. He’s really done well with that.
Mother of Robert, age 16
The responsibility of cleanliness
Mom: When your cousins wanted you to come over and stay over, it’s always been the reason why you didn’t go – because of catheterizing! When he was younger, I think he didn’t want to cath at other people’s houses because he was still at that point where he didn’t want people to know.
Isaiah: I wasn’t allowed to stay over friends’ houses!
Mom: Well, I think that might have been true too! But you didn’t want to anyway! At first I didn’t let him because that would be leaving the responsibility to somebody else. Because when he was younger, that’s when he was not wanting to do it, and that’s when he would go into the bathroom and come right out. I couldn’t ask somebody else, “Well, you have to really go and listen at the door and check on him.” As I think back on it, when he got older and he was really capable of doing it himself, I didn’t have a problem with him going anywhere to do it; that was more on him. But when he was younger, it was me. Because then all the responsibility of cleanliness – I would not feel comfortable.
Mother of Isaiah, age 17
This has not affected Ryan’s social life at all, thankfully. His friends are blissfully unaware of his problems. At overnight summer camp the past two years, he has had to go to the nurse’s office to either change pull-ups, take medicines or to cath. He just either says it is for kidney medication, which somehow seems less embarrassing, or asthma medication. (He also has asthma.)
Mother of Ryan, age 11
You go through it on your own
That’s the hardest thing I would say for him: having this disability (which really is a disability) and not getting any of the sympathy, not getting understanding because it’s so private. Especially at this age, this is just so embarrassing. It’s not something you share. You go through it on your own, you and your family go through it on your own without support and empathy, you don’t get the empathy. When you break your leg or you’re in a wheelchair or you have something physical that people recognize, you know kids are sensitive to that. You know they don’t make fun of the kid who’s in a wheelchair, but yet my son, who would have these accidents sometimes, who would be the “stinky boy,” got made fun of…It doesn’t take much to have a little aura of odor around you. And the kids were really mean.
Mother of Henry, age 12
A weight was lifted off his shoulders
This year, interestingly enough, he chose to tell two friends, some boys who are his good friends in the neighborhood. They play together all the time and he told them. I don’t think he told them a whole lot, but he told them about having to cath.
It was very interesting! I was surprised – I could tell that he felt it was like this weight was lifted off his shoulders. He was like, “Wow, I told Aidan and Kyle.” And I said, “Are you sure? Are you worried that they’re going to tell anybody else?” He said, “No, no, because they told me secrets, so if they tell then I get to tell their secrets!” So there’s a whole tit for tat.
Mother of Henry, age 12
They were able to confide in each other
He was able to tell I believe two of his friends. One I definitely know about – we had talked about it, and I kept telling him, “If you ever decide that you want to tell even one of your friends, you’d feel a lot better. You’d feel good knowing you’re able to talk to somebody about it that’s your own age.” He was like, “Okay, well no, I’m really not ready for that,” and I said, “It’s up to you. When you’re ready, you will know, and you will decide who you feel comfortable talking about it with.”
Well, after telling his friend, his friend in turn told him that he has a medical problem with his back – his back is not aligned. And it was something that he was uncomfortable with, that he didn’t necessarily tell anybody. And so they were able to confide in each other, and they both felt good about it. And if there was an issue or something came up, they knew that one was not going to make fun of the other for it. They are still really good friends to this day… His friends and other classmates know that he has something medical going on. It’s really interesting, because kids I think these days are so used to there being so many different medical things going on with so many different kids that it doesn’t really faze them. They’re a lot more accepting of differences than the way kids were when I was his age. It’s completely different.
Mother of Ethan, age 13
My biggest worry
If she caths herself at 9:00 to go to bed, she can’t make it from 9:00 to 6:00 in the morning to cath again. I wake her up usually around 11:00 or 11:30 every night and say, “Come on, in the bathroom. Go cath yourself.” And sometimes she’s cathing herself in her sleep practically – she caths herself and goes right back to bed. But you kind of have to wake her up, because she doesn’t always wake up to a full bladder in the middle of the night if she’s really, really sound asleep, so then she’ll wet during the night.
So if she sleeps over I’ll sometimes tell the parents, “She really needs to go to the bathroom and cath herself before she goes to bed, so before you go to bed, could you just make sure she does?” And I have to remind her, “Be careful what you’re drinking, be careful when you’re eating, that kind of stuff. If you’re going to have a big bowl of ice cream at 11:00, I guarantee you, you’ll have to go to the bathroom at 3:00 or 4:00.” So she’s pretty much got that down pretty well now. I worry though. That’s my big worry, that she’s going to sleep over somewhere and have an accident and people are not going to be too understanding. But for the most part it’s been okay.
Mother of Kayla, age 14
Getting easier
I think it was harder when he was younger, with more sleepovers and things he was left out of. With his close friends, the friends he’s been friends with since grade school, that’s been no hindrance at all, absolutely not! They all know about it, they all come over, he attaches his bag if they sleep over – they could care less.
Now that they are older, the things he does socially are more focused on going out someplace, which he can do much easier, instead of having someone over and having to cath – it’s uncomfortable for him.
I guess maybe too with his age, he is so comfortable with himself and his issue. I mean, he has a girlfriend now and he has told her everything. She knows everything and it’s great and he feels really comfortable with it.
Mother of Dylan, age 16