One of the higher stressing things of being a parent is potty training. Depending on your child to tell you when they need to go has got to be frustrating enough. But let me take it one step further for you: not knowing if your child is able to tell, or if they can hold it at all.

Obviously this doesn’t apply to most children, and most parents (or adults, for that matter) just don’t understand. But I’m going to speak plainly here.

Namine has caudal regression syndrome. That means that something went wrong in the womb, and as a result, her sacrum (tailbone) didn’t form properly. Some children with CRS don’t even have a tailbone; some are born with a truncated spinal column. Namine is fortunate in that regard.

Namine has been fortunate in many aspects. She not only has feeling in her legs, but she can put limited weight on them. Her orthopedic surgeon and physical and occupational therapists are of the mind that with the proper training (and foot surgery, of which she’s already had two), she’ll be able to walk on her own, perhaps one day even without a walker. Because she has scoliosis, though, she might require a spinal surgery as well.

CRS is more than merely changing the skeletal and muscular structure of her pelvis, legs, and feet. It also affected her abdomen, giving her a hernia (which has been surgically corrected) and affecting her bladder and intestines.

Namine also has limited – although we do not know exactly how much – control over her bladder. Sometimes she can tell when she needs to use the bathroom, sometimes not. Bladder control while she is asleep, though, is nonexistent. We do not know if this will ever change.

As much as we can, and as much as she is able, we encourage Namine to go to the bathroom on the toilet. It’s a delicate balance; early on, when she failed to do so, she thought we’d get mad at her. We were quick to remedy that – her best is enough, and we would never punish her for trying. This is unfamiliar territory for us, too.

Even though Namine is smaller than other five year olds, she’s still growing. (Some of her doctors have thought that her lower half might stop growing at a certain point, but even with the scar tissue built up in her feet, that hasn’t happened.) That growth means bigger diaper sizes.

IMG_20140116_215807_680

We don’t buy diapers any more. Once Namine reached a certain age, we were able to get diapers from the state, since Namine is physically disabled. (Don’t get me started on semantics or politically correctness. As far as the state’s concerned, she’s disabled.) The trouble is, Namine is a little too big for the current diapers in her closet and a little too small for the new diaper samples we’ve been sent.

I mean, look at that thing. Its length is more than half of Namine’s height. So our dilemma with these diapers is twofold. Not only is Namine’s butt a little too small for the new diapers, but her hips don’t hold them in place. Most people basically have an hourglass-shaped body – the torso narrows to the waist, then widens at the hips. Namine has more of a V-shaped body – her torso narrows to her waist, but her hips do not provide a widened resting place for the waist of a diaper; her body doesn’t really start to widen after her waist until her thighs start.

  • The one size fits all approach to diapers. Even normally growing and developing kids don’t fit into normal sized diapers. Hope you were able to improvise to get them to work.