My kids have a Problem. The technical term for their Problem is constipation. It causes encopresis and enuresis. Those are fancy names for shitting and peeing in your pants. It sucks. Prettier, more tactful words would insult our experience. Normal for us is like being perpetually stuck in the potty training phase for half a dozen years with no end in sight, and with the addition of inescapable shame. Out in public we worry. We whisper secrets, cover wet spots, and avoid friends’ houses. Sometimes we just live with it and forget that others don’t carry this burden. We carry changes, schedule sits, and never ever expect the laundry to be finished or the underwear to last all day. As with any other chronic problem it is possible to get used to this baseline. We plan accordingly, and usually manage to live a pretty happy life despite the extra hurdles. We try to act like nothing’s wrong.
A cynical theme song exists for those who live by our mantra.
Right now we are trying to make the Problem go away, and this attempt to control colons consumes us. Trying to solve the Problem is a million times worse than the Problem not only because it shines a spotlight on something that is difficult to face and to share, but also because it is not working. We have reached out seeking wisdom, and compiled a chaotic collection of conflicting advice that we turn over and over in our heads. We are failing despite the fact that we now have a gastroenterologist, a pediatric urology specialist, and a behavioral psychologist on our team. We are failing despite custom charts and tracking forms that I carry in my purse. We are failing despite testing so invasive that it happens in a hospital with a child life specialist present. We are failing despite magnesium citrate clean outs, kitchen timers, increased fluid intake, automated reminders from a fancy watch, suppositories, enemas, miralax, exlax, fiber supplements, fancy new water bottles, elimination diets, corn tests, and probiotics. We are failing.
There is talk of surgery. There is second guessing. There are decisions to be made. The return to public school looms. We fear dignity will be compromised. We take solace in denial. We nestle into this safe space and act like nothing’s wrong. We hope that it will make us strong.
I can now never reveal my identity on this blog. I’ll have to be “Beyond” forever, but I am hoping some other struggling family feels a little less alone and a little more okay because I shared. I am also hoping that I’ll one day have the pleasure of linking to another post in which I report a marked increase in the quality of life around here.