Pain

 Facebook carries bits of past life back to me, snippets that I chose to share with the world as events occurred. It is a window into happy times and sometimes sad times. It is a way to remember.

This week there was a celebratory post. Ryan had been free of stomach pain for three days. He was eight. My best guess is that he had been in pain most of those eight years. What was new was my awareness of it. 

We had been gluten free for years and he had reported feeling better. As we continued to struggle with violent outbursts and rigid refusals, somehow it occurred to me to ask him specifically about stomach pain. I taught him the pain scale that no child should ever need to know. I asked him, casually every day to rate his pain, and he told me. Some days one. Some days two. Never distressed. Never expecting me to do anything about it. No indication that this was anything but ordinary for him. 

It was a slow awakening. Day by day, the matter-of-fact report of pain, so much a part of his lived experience that it didn't occur to him that it could be different.  I knew better, and I was determined - for all the good and ill that determination can do.

The three painless days that Facebook remembers for me were likely correlated with a further restriction of diet. A success that brings pain of another kind.

We did the best we could, Ryan and I. We had a lot of good days and a lot of hard days. We got pretty good at doing the hard things together in hopes of more good days to come. Sometimes it seemed like they worked. Sometimes we couldn't tell. Sometimes it was all for nothing and we tried the next thing.  

And then he grew up. Like every teen he wanted to manage his own life. He said his stomach didn't hurt any more. I suspect the real story was that the pain in his gut was more tolerable than the pain of being different, of restricting his diet, of not eating the things teens eat. It was his choice to make. 

He gave up on hopes of feeling "better". He wasn't interested in chasing a health he had never known. He sought the comfort of "normal" and found what strategies he could for coping with the pain. 

I wanted more for him. I wanted to offer him something better than the hopes we'd clung to before that never delivered enough. He didn't want to look any more and I couldn't find a better plan. 

We settled into a life that worked as well as we could make it work and put what hope we had in a medical system that I had never expected to have the answer. 

I don't know if the world holds an answer for kids like Ryan. It seems more likely that there was an answer at age eight, when his brain had more growing ahead of it, his mother could hold him up, and he had the capacity to hope for something better. I had a sense of urgency back then. I felt the clock ticking down, opportunities diminishing as childhood waned. 

It's just as well I didn't know how it would end. I would have lived in panic if I'd known how very final "too late" would be when it arrived.  

Drafted Dec 12, 2022