Ok, let’s talk poop.
Poop in most households is a common, funny for four year olds, important for elderly, bodily function. And, don’t get me wrong, it CAN be funny in Rett households, just in completely different ways. We make up songs, kinda like cheers actually. Mine is “Come on, Katelin, Poop. Come on, Katelin, Poop.Come on Katelin, come on Katelin, Come on, Katelin, Poop!” I know, not very inventive, but if you heard it you would think it had a nice rhythm to it, almost like cadence in boot camp. (Go Navy!) One that really cracks me up is by another Rett mom, goes something like…”Your fart, your fart, brings joy to my heart!”
To put in bluntly, WE LOVE POOP! We brag about it. Keep track of it on a daily basis. Get nearly giddy over it. “OMG, she POOPED today!!!” Now, right about now, you’re either asking yourself, “What’s the big deal” or “I wonder why it’s such a big deal?” I’ll tell you, it all boils down to FEAR.
Yup, we (Rett parents) are deathly afraid of the opposite of pooping, which is NOT pooping. Almost all Rett children have neurogenic bowel, which in layman’s terms means, our children’s peristalsis just isn’t as fast as a normal person’s, and simply put, this is very, very bad for a body.
Katelin would most likely never have a bowel movement without some kind of intervention. And Rett parents have an arsenal to choose from, ranging from a daily laxative (Katelin uses Miralax) to suppositories and enemas to digital disimpaction. Lovely, huh? But necessary. Oh, there’s mineral oil, milk of magnesia, magnesium citrate, flax seeds, senakot and on and on-it boggles the mind the combinations that work for different girls. It’s great being around other Rett parents because you can talk “poop” and everyone understands and it’s actually a common conversational topic. So, back to the “what’s the big deal?” and “Why the fear?”
Well, for one thing-it’s painful. Try going seven days without a bowel movement and you’ll know what our children go through all the time. Then there’s the not eating- you can’t put new stuff in ’til the other comes out, which can lead to weight loss. And then to top it off, here’s the fear- injury and death. There are all sorts of complications that chronic constipation can lead to. Imagine not being able to tell that your child’s intestines have twisted, or that they are so impacted their bowel is on the verge of perforation. Complications such as this are some of the causes of death in Rett children.
So, you see “poop” is not just some funny word to throw around. It’s an important word of high standing! I am waiting for the day it’s just some funny word, though. But, until then, Moms and Dads-here’s to pooping!