I guess when he’s fully potty-trained (he’s starting to train now) they want to be able to just say, “Okay, Patrick, go ahead and go pee,” and then see how much he has left in his bladder. We have him pee at home, but we know he doesn’t pee out everything he has in there. He’s still so young, so we’re not rushing him in yet because I don’t think he quite understands the whole process. It’s hard for us to get him to keep going and going and going, because he just stops himself almost.
Mother of Patrick, age 2
She has made the decision that this will soon stop
It’s interesting that she hasn’t taken more independence. I think that she in her mind has made the decision that this will soon stop. I think that’s where she is…I’m inclined to agree with her. What I’ve noticed about the kid is that once she makes up her mind it’s done. Yeah, I really think since she’s not wetting at night anymore, I think that we are probably on that road.
She has what she calls a magic button on her lower belly and she says that she can – actually, that’s how the residuals started decreasing. She would sit there for a bit, and push this magic button and then void more. So now she thinks if she keeps doing that that is what is going to stop the cath. It’s pushing that magic button.
Mother of Amalia, age 9
Keeping him from dialysis
We’re trying to keep him from dialysis now, so he’s on medication to keep infections away and keep his blood pressure down, because when you have bad kidneys your blood pressure tends to rise. And we’re working on bladder control.
Mother of Manny, age 10
Trying my best to communicate
We talk to all our children about how staying healthy means taking care of you and your body. With Kristin, I tell her that if she doesn’t go the bathroom and continues to hold it, that her body is going to get sick. I explain to her how important it is to keep her body feeling good. As she gets older, I will be able to explain more of the medical problems that will arise if she doesn’t take care of herself now.
Mother of Kristin, age 4
She’s perfectly normal
Mom: It’s been a long time, and everybody keeps asking us how long Meghan’s going to need catheters.
Meghan: And at the beginning, I used to ask that. “Oh, I don’t want to do this for the rest of my life!”
Mom: But I keep telling Meghan it’s kind of like my diabetes: sometimes it’s a little bit better and a little easier to take care and sometimes it’s a little bit harder, but my diabetes is never going to go away. I’ll always have to do this. Meghan has a chance that this might go away. The older she gets, the stronger her bladder gets, this might go away. But it might not be anything to do with her bladder, it might be the connection between her bladder and her brain, and she might have to do this forever, but even if she does –
Meghan: I’m perfect!
Mom: It doesn’t really matter, nobody will ever have to know! She’s perfectly normal and it’s just the way she goes to the bathroom, and that’s totally fine.
Meghan, age 8, and her mother
I worry because she has such a busy schedule between school and work and dance, and she doesn’t want to miss anything! By her not wanting to miss anything, that’s when she doesn’t want to go to the bathroom. I explain the importance, that you have to take the time out to go to the bathroom or this is going to happen again. So that’s really my concern, and we talk about that, and every once in awhile, I’ll ask her, “Have you gone to the bathroom today? When was the last time you went to the bathroom?” And sometimes she’ll even tell me even before I ask because she knows that I’m going to ask her.Mother of Alexa, age 16
Hopefully we will try to wean her from the catheter
We are right now doing biofeedback so that she can strengthen her muscles, so then hopefully we will try to wean her from catheter, but we have to make sure she doesn’t get infections and can empty the bladder. They might do a test in a year or so.
Father of Jaya, age 8
It breaks my heart to think of it
We are really praying that this PTNS treatment will start to work. We do see some signs of improvement, of possibly fewer accidents during the day. It breaks my heart to think of him continuing to deal with this problem during his teenage and adult years. Our long-term plan is to keep looking for safe, cutting edge treatments that do not have serious side effects or risks. We hope that the researchers out there are working hard on a cure…
The greatest stress was definitely when the medications caused his temporary heart problems. It definitely put the bladder problems into perspective. That said, the ongoing stress is the heartbreak of knowing that he may grow into a man who is still incontinent, and that just hurts so much to think about.
Mother of Ryan, age 11
He will have to continue to cath – it’s probably the biggest and the most important thing. He must continue to cath frequently and keep his bladder empty. Of course he should be watching his diet a little bit more than he does with the salt intake and staying on his meds. It’s just going to be a constant through his life. Making sure his bladder is emptied is the biggest thing.
Mother of Dylan, age 16
The things I can’t control
I’m very concerned about the future. I just keep thinking, “Oh my God, what about when he goes to college?” He’s just so easily distracted, and also it’s just going to be hard! So yes, I am very concerned about when he gets older. And if this was my daughter who is incredibly responsible and organized and all that it would be different, but he’s just my ADHD boy and he gets distracted. So I kind of have to hope for the best. Maybe he’ll go to community college! [Laughs]
But you know I think about that, when the kids go off to college and boys do stupid things and they drink beer…when he has a lot of liquids, he’s going to need to pee and he doesn’t really connect the dots. And of course this is all going to work itself out, it has worked itself out along the way, but I’m a mom and I obsess about the things I can’t control.
Mother of Henry, age 12
The big thing is that she’s continent
Initially, when we started, the doctor wasn’t sure it was going to be lifelong, but I don’t see how it’s not going to be. She can feel when she needs to cath now – she’ll say, “I have to go to the bathroom,” and sometimes she’ll wake up in the middle of the night and go to the bathroom if she feels like she has to. Sometimes she won’t, but sometimes she will. And she can push a little bit of urine out if her bladder is really full…but I don’t really see how she’s going to be able to manage without because I don’t think she ever fully empties her bladder unless she caths.
I’m pretty sure it’s going to be a lifelong thing…You know, I’m really okay with that. The big thing is that she’s continent. That’s the big thing, that she’s not wetting her pants, she’s not wearing a diaper.
Mother of Kayla, age 14