Tuesday, October 26, 2021

Potty Talk--SB Edition

I tell my kids constantly to stop using potty words, and yet here I am doing potty talk on the internet. 

Anyway...I've mentioned before that I've been able to attend Spina Bifida leadership institute where I have met incredibly fun people who understand and relate to my life in a different way than most people can. In that group we can talk openly about uncomfortable topics, like potty talk. After all, Spina Bifida is much more than difficulty walking. Bowel and bladder incontinence is almost always a given.

So at leadership institute last year, I met a man with Spina Bifida who I really connected with. Although he is a few years older than me, I saw a lot of my son in him--who my son could be, what his life could be like as a working, professional, adult male with Spina Bifida. At some point this guy was sharing an experience where he was in a very public position, presenting in front of a crowd or something, and he...had an accident. He went #2 in his pants right there, up on stage, where the show must go on. I was both laughing and crying through his telling of the story. Not where you're laughing so hard you're crying, but actually crying because I have seen my son in a similar space and I know the horror and trauma. It's not funny. But then also laughing because, years removed from this experience, this man was able to move on with his life with the understanding that Spina Bifida really stinks, sometimes literally, but life goes on. He was able to find the humor in the situation that is all too common when bowel control is just non-existent. 

I went to the store today to pick up a prescription and stock up on enemas for Evan. Since he's had a regular enema routine he's been much more successful with avoiding accidents, especially at school. I only had Cameron with me, and he wanted to help carry the boxes of enemas. As we stood in the checkout line, a lady behind us was watching Cameron, so he started smiling at her and dancing around, showing off the enemas he was holding. My first reaction was embarrassment. I felt like I needed to explain, or hide them, or quickly put the "blame" on my son by saying something like, "Those aren't for me." But then I thought, so what? What if they were for me? If I needed an enema, especially for something 100% out of my control (like SB), I would owe no explanation to a stranger behind me in line. And I should have zero shame about it. So I didn't say anything. I hope she got a good laugh out of Cameron's dancing and showing off our enemas today.

On the way out the door, as I'm holding the prescription and 4 boxes of enemas, the employee at the door said, "Ohhh, someone's having a procedure! That's horrible!" In my shock, I just kept walking, but it would've been a good teaching opportunity for her. As a matter of fact, lady, this is just normal life with Spina Bifida. And it's not horrible. Enemas are a wonderful tool that my son has to keep his body healthy and regular. 

I still disapprove of most potty talk at home, but you know what? It's gonna happen when you live with Spina Bifida, and sometimes it helps to find humor in it.

PS. My big guy turned 9 this month!