Bittersweet

Good evening, Autotelic family.

After a long and hard travel day, I’m afraid I have little left to give. But I like to think I can do a lot with a little, so here I am.

The end of summer is always bittersweet, and this year is no different. But despite the difficulty of raising a non-speaking 15-year-old with profound autism, I wouldn’t trade my days for anyone else’s. I know by now the price of love is loss, and sometimes the loss comes a little bit at the time instead of all at once.

The other day, I came across something I wrote in 2012, just a few months after John Henry was diagnosed. I was still in fix-it mode, as I would be for years. When he was two, even though he had been declared autistic, level three, I was sure we could reverse what had happened to him. I was sure he’d be better by the time he was kindergarten age. I was sure that he’d be a super-responder to all the therapies I’d lined up if I could just do everything right, just like all the books said. But after three or four years, I stopped reading the books. The vetted ones all said the same things. The outliers were, well, outliers for a reason. I couldn’t fix my son’s autism with a special diet or supplements, homeopathic remedies or, well, anything. I finally realized it wasn’t to be fixed. It was to be accepted, honored, and my son was to be given space and time to make his way in the world, however he could make it. I didn’t want to believe back then that he’d always need around the clock support. I don’t want to believe it now, but I have to.

The final essay in my second memoir, I Dream He Talks to Me, is called Terms of Surrender. It’s about me wrestling with the reality of the hand my son was dealt. The thing is, it’s damn hard to look at that reality straight in the eye, but I have to do that too. It’s hard to admit, but I’m not sure of anything anymore. That certainty I had in 2012 has given way to a more abstract idea of what might be—where there used to be yeses and nos, there are now only maybes. That’s the deepest lesson I’ve ever learned. And these days I try to apply it to all things.

I have two favorite sayings: 1-“All roads lead to maybe.” 2-“This too shall pass.” They seem to contradict each other at first, but a closer look reveals they’re saying the same thing—nothing material is immune to change. We don’t know where we’re going no matter what we think, we don’t ever really know what the answer to anything will be until we get it, but we can be certain of one thing—time flows like water—it will never go backwards. It may be a dark thought, but we’re all terminal cases. There’s some brightness in it though—if we can remember that none of us are long for this world, maybe we can do better with the time we have. There’s the bitter and the sweet again.

Life can be so tough. But instead of shaking my fist to the heavens about it, I’m learning to accept that we don’t learn anything if it’s easy. Good thing I like school.

Peace. Love.

Allison

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