This is a post I’ve been thinking about writing and trying to decide if I should or not. A major reason I want to write about our lives with spina bifida is so that others can be encouraged, and also so people without SB or other disabilities can see that this life we’re living isn’t “special,” but just life. But the truth is, sometimes SB is a big bump in our paths, and I need to be able to write about that, too.
I’ve also hesitated to write about potty training because I want to respect my kids’ privacy. I don’t want them to ever feel bad about or be teased about things I’ve written about our lives. I would never post a picture online of them on a potty or something. But I feel like I need to write about this because it’s been such an unusual problem. I also feel that potty training woes are pretty universal and any kid who dares to tease one of my girls about using the potty should probably ask their parents about their own potty misadventures.
The girls are now past 3, and though Etta has made strides in the potty learning department, I can’t say that either of my kids are potty trained. And the intersection of their personalities and this milestone and the speed bump of spina bifida has made the whole situation oh so complicated.
Claire, ever wanting to be a big girl, always asking me if she’s old enough to drive the car and when her boobs are going to grow in and when she’s going to be tall like me, would love to be able to be a big kid in just about every respect, including the potty. However, like most people with SB, Claire has disability in her urinary and GI tracts. She, like many people with SB, uses a catheter to empty her bladder and takes medicine to keep her dry in between caths. In the future, this is how she will manage her bladder, slipping into a bathroom to discreetly use a cath, and no one but her will have to know. For now, though, she can’t catheterize herself, so we do it for her every four hours. Most people with SB also get on some kind of “bowel” management plan that can involve nightly enemas to keep them dry during the day, medications, and even surgeries. We have an appointment with GI in August to start figuring out what Claire’s bowel management program will be, but it is our hope and belief that she’ll be able to be diaper free and will be “potty trained” to the degree that she will be able to cath and do whatever bowel protocols she needs to do to stay clean and dry during the day. But none of this progress is as fast as she’d like.
Etta, usually my independent little spirit, has decided she is just not ready yet to take the potty leap. If you ask her, she will say, “maybe tomorrow.” This has been her approach to many milestones. She didn’t walk until 14 months, when she was good and ready, skipping the toddling-and-falling stage of many early walkers and graduating straight from cruising to walking. Her speech development also seemed a little delayed for a while, and our pediatrician was even talking to us about referring her to a speech therapist, but her verbal skills have taken off recently, and we have no concerns. I’m a little frustrated that she hasn’t shown more interest in the potty, something I’ve been trying to get her to do since she was 18 months old, but I have confidence that my girl does things at her own pace in her own time.
Faced with a reluctant potty user, many parents try to motivate their kid. This can be something simple like telling them it’s time to be a “big kid” and buying “big kid” undies and doing other “big kid” things. Except I can’t do that, because I’d be simultaneously telling Claire that she is not a “big kid” since she can’t do these things. Some parents do boot camps or sticker charts, rewarding kids for potty progress, but then Claire would wonder why she can’t have treats and rewards, too. She actually cried at Bible School when all the other kids in our group had potty breaks and she didn’t get to use the potty.
I do what I can to affirm to Claire that she’s a big girl of whom I am very proud even though she doesn’t use the potty. I want her to know that what I’m proud of in her is her loving heart, her inquisitive mind, her infectious laugh, her affectionate nature, her nurturing spirit, her tenacious soul, and all the other things that make her who she is. I don’t want her to ever feel that she is anything less than a whole person, regardless of tools like AFOs or catheters or enemas that help her take care of her body in the ways she needs. At the same time, I’m at a loss of how to motivate her reluctant potty training sister without making Claire feel less-than.
I’m sure one day this will seem less fraught. Claire will have a potty system that works for her. Etta will eventually be a potty user. But in the meantime, this feels tricky.