One of the best things about social media—and Facebook in particular—from where I sit as a mom is both the crowdsourcing for suggestions and the support and sympathy you can receive when something is going on with your kid. Any time of day or night, friends out there—whether it’s someone who sat next to you in high school American History, or a former co-worker, or the parent of one of your kid’s friends—will offer you advice and encouragement.
You can post about your kid’s ceaseless cough—as I did last night—and people will offer honey and humidifiers and home remedies. You can post when your kid won’t sleep, won’t eat, fell off the jungle gym and had to go the ER, got tubes for ear infections, and the list goes on. Parents out there are very understanding and you feel like you’re less alone in dealing with your traumatized or traumatizing child. No one says, “wow, you must be a terrible parent for letting these things happen to your kid,” or “Your kid sure is clumsy!”
But, as Zoe’s urologist Dr. Hodges points out in It’s No Accident, and his urologist predecessor Dr. O’Regan pointed out to Dr. Hodges, no one wants to talk about poop or pee. No one is going to post on Facebook, “Hey my kid had 5 accidents today and I have no idea why!” Or, “My kid pooped in his pants at school again—man that sucked!” It’s embarrassing. No one wants to talk about it. Even though pee and poop accidents are clearly NOT the fault of the child, as my family has certainly learned over the past year and a half, there is still a huge stigma that somehow the accidents ARE your child’s fault, or inexplicably YOUR fault, for not correctly potty training your child. Even well-meaning strangers or acquaintances don’t necessarily understand what’s going on (and why would they, since the truth about accidents has not been widely told until now). Thankfully (and I am very very grateful) we have wonderful family members and friends and teachers who have tried as best they can to understand the physiological reasons behind Zoe’s condition and have supported us through everything we’ve dealt with. Thanks, guys.
Still, I feel like most people don’t get it, and unfortunately that extends to many doctors and early childhood educators who absolutely need to get it. That’s why I’ve tried so hard to tell people about Dr. Hodges’ work with our family, how he has helped (and continues to help) Zoe, and why the book is so important. It turns out that several friends of ours have experienced problems with their children having accidents at one time or another. Many have come to me, knowing what we know, and asked for advice. I have told them everything I know, and encouraged them to seek additional help if they need it (although I don’t know local doctors who are equipped to address this issue, which is why we ended up driving more than 300 miles to see Dr. Hodges and his colleagues for treatment our insurance didn’t cover much of).
I don’t know how to erase the stigma of pee and poop problems, other than to continue to publicize the roots of the problem and the solution. I hope someday people won’t be blaming parents or children for potty issues, but will be working with them to help their children be healthy without fear or embarrassment. Then at least they can stay dry when they fall off the jungle gym and head to the ER for stitches.
The piece above is also posted at It’s No Accident.
By the way, Zoe is doing well. Thanks to the variety of medications and therapies Dr. Hodges has prescribed, she no longer has frequent accidents. She still has occasional accidents, and we are still hoping to reduce that to zero, but we don’t know when that will happen. There’s no way for us to know how stretched out of shape her rectum had become or how thick her bladder walls were or how long it will take for those organs to regain their proper shape and function. It’s different for everyone.
Recently she had a terrible relapse that was completely bewildering to us. Turns out she had gotten constipated again (but she was still pooping frequently, so she was really backed up). Faced with such a serious setback after months of progress, I decided to make another attempt to use a suppository with Zoe, which Dr. Hodges promised would clear her out pretty quickly. Zoe and I worked it out so she was willing to let me give her the suppository without a fuss. I let her get ready at her own pace and she did some yoga beforehand. Also, she will do almost anything for the chance to be read to, and when you’re sitting on the toilet for a while, you can listen to a whole lot of stories. So after three days of suppositories Zoe’s colon and rectum were as empty as a cave, and she’s back to normal. I’m hopeful this won’t happen again, but if it does I’ll know what to do.