I had brunch with Lisa the other day. We hadn’t met in person before but we’d shared not a few laughs and commiserations online. Lisa is a fellow ‘disability mom’ – shorthand I use around the house when Carsten asks, “Now who is this again?” “Oh you know. A disability mom.” Say no more.
I’m not sure how it started but we’re friends on facebook. We occasionally message back and forth or acknowledge each other with a quick comment or thumbs-up or haha. Her son is approximately the same age as Owen would have been. Their issues are quite different in many ways but of course she and I share an experience that allows us to connect quickly. With an obvious exception: her son is very much alive and the things she worries about are current.
The worries we would have shared seem long in the past for me now – 7 years this fall since Owen died – and I rarely give voice to the simultaneous relief and anxiety I feel bubbling up when I occasionally think what my life would be like now if he hadn’t. Hanging out with Lisa was a stark but comforting reminder – it really is as hard as I remember, and disability parents develop a special kind of resilience. They – we – can handle it.
The conversation turned to how she’s facing that horrific precipice every disability parent knows is coming: when your child ages out of high school at 21. We talked about options (variously: “not entirely sure” “still looking into it” “no idea what other people do” “maybe start my own thing” – indications of how much support there is for ‘transitions’), and at one point Lisa paused and said, “So, what do you think?” I don’t know what she meant exactly, but I’d been quiet for a while and she was probably simply curious, looking to see if I had any ideas.
I didn’t. Nothing helpful, anyway. Just thinking about it though made me remember something – a memory lodged so deeply in my gut it was kind of physical. I can only explain it this way: I would sometimes be going about my business with Owen – changing his diaper, feeding him, moving him from floor to chair and back again – and I would think, “JFC I will literally be doing this forever. No, actually. Forever. Like, literally. Forever. Seriously.” It would always be a stunning moment. Time would stop, if briefly. Despair was avoided only by staying busy, which was easy to do.
We all know that didn’t turn out to be the case, but I didn’t know it at the time. It was an unsolveable, intractable problem. No amount of support or planning would have changed that. The relentless emotional labour of having a child like Owen can be a prison of its own kind, regardless of what kind of help is available, or how much money you have.
When I tell our story now I’m aware of my revisionist tendencies – the way I cherry-pick anecdotes to turn into poignant teaching moments. The way I present the wisdom of today as though I knew it back then. I give disclaimers in my talks but at some level it’s all kind of an unavoidable elaborate lie. Tales spun for entertainment, to soothe, to convince it wasn’t all for nothing. A way to take an experience so truly indescribable and turn it into words so others can catch the barest of glimpses into that strange and lonely world – one which, frankly, grows increasingly hazy in my mind. It’s doomed to fail as an exercise in accuracy. It’s maybe more an exercise of creativity, even fiction.
Anyway, with Lisa I said this: what got me through (inasmuch as you can say I got through something), was that I decided not to be imprisoned by my responsibility. Which meant more than just ‘taking breaks’ and allowing others to care for Owen – it meant accepting whatever consequences would come of that decision. Meaning, it likely wouldn’t always work out the best for him. He would have great moments, sad moments, painful moments, many of which I would know nothing about – and I was alright with that. I didn’t want his fate solely in my hands anymore, because otherwise I couldn’t breathe.
Owen’s death was devastating for me. It’s not at all what I wanted. But I’m okay that I wasn’t with him when he died, and I don’t fret about whether I could have prevented it. I had already relinquished a power I never really had in the first place (to save Owen from his own frailty), and was prepared to accept any outcome.
So while I didn’t have any helpful suggestions for Lisa, I could access that old terrible feeling and share what new insights I could muster – all while chowing down on a hearty breakfast, laughing about the bothersome waitress and thinking about the homemade butter tarts she had generously brought for me.
I don’t know about Lisa, but here’s what I got out of it: connection with a hilarious and kind disability mom (say no more), and, through the side door of revisionist story-telling, I got to hold Owen close and forgive myself all over again.