a spina bifida update: potty training?

Around my girls’ second birthday, I got some little potties and put them around the house. I’m in no rush to potty train, but I know that we’re getting close to that time, and I wanted Etta to start getting used to the idea of seeing and sitting on a potty. Since Claire, like most people with Spina Bifida, uses a catheter to empty her bladder, I hadn’t even thought about “potty training” her.

I didn’t take into account what an observant and determined and VOCAL little girl she is. Etta doesn’t seem to care much about the potties yet, but Claire has taken notice and wants to use one. She asks to use the potty, and she wants to talk about “going pee pee.” And I have to confess, it kind of broke my heart a little. I know she will never be “potty trained” in the traditional sense, and it felt like for the first time, she wanted to do something I knew she just couldn’t, like I had to figure out for the first time how to make her understand that she’s disabled. 

But the thing is, Claire will be able to be potty trained, just in a slightly different way. By the time she’s able to go to school, Claire will likely be able to go into a bathroom and use a catheter herself to empty her bladder in the toilet. She’ll be able to stay dry in between caths, and to most people, her cathing will be largely invisible. It won’t be a big deal, it’ll just be part of her private bathroom routine, the way all of us has a private bathroom routine. So instead of feeling sad for her that she can’t just “use the potty,” it’s time for us to start empowering her and teaching her how she will cath on her own someday.

You may have seen commercials for catheter companies on television and wondered who the heck they were advertising to. I’ve seen friends on Twitter wonder. Well, likely most of the some 166,000 people with SB in the US, not to mention tons of other people with other disabilities that affect their lower bodies. Lots of people cath. It’s just another normal, human way of taking care of our bodily needs. Today, I called our medical supply company and ordered Claire some different caths in addition to the bagged system we usually use, so she can start sitting on the potty and “going pee pee.” Because as I tell her every time we cath, “a cath is how Claire goes pee pee!”

I was a little conflicted about writing about all of this in such detail, because despite what it may seem, I really do think about my kids’ growing up as I write about them online, and want to protect their dignity and privacy. However, I also believe it’s important to both spread knowledge about disability, particularly Spina Bifida, and to normalize the experience of disability. I think being open about this area of our experience helps to normalize something that millions of people do every day, several times a day. Cathing should not be shameful or embarrassing. Everybody poops. Everybody pees. Some of them use catheters and some of them don’t. It’s all OK.

4 Replies to “a spina bifida update: potty training?”

  1. I love this, and I agree, humans have a variety of functions we all do, and although specific differences in our bodies may require us to do these things differently, we all do them. It is a wonderful gift when those who do things differently are willing to help us understand this. I also just have to say that as a longtime rehab nurse, I am always thrilled by technology advances. Self contained bagged self cath kits are a long way from the days of patients having piles of red rubber latex catheters at home getting reused by being run through the dishwasher.


  2. Thank you for sharing about your and your daughters’ experiences, trials and triumphs. I also wage internal debates about over-sharing about my little one, who won’t always be a little one and will appreciate her privacy. But there is also certainly value in sharing among us parents. You make excellent point about normalizing the slight differences each child (or parent) may have.


  3. Yup, totally relate to your last paragraph. Every time I write about cathing Henry I’m like, ew, what if one of his friends sees this some day, and I’m just going on and on about his peen and now they know all these private details? I’m torn between wanting to spread awareness and normalize it, and just be discreet (or totally silent) about it to protect his privacy.

    What do you think you guys will do for bowel management? I think I’ve asked you this before….


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