So That Happened

It’s been almost four months without posting. Four months of feeling frozen—mentally, emotionally. I’ve been very hard pressed with stress and fluctuating anxiety, barely able to do something meaningful beyond getting through each day’s have to’s (of which there are many). And I had to get through each day—for my son, not just for me. I think many special-needs parents know that feeling. But this time, it went on for far too long, being in the valley. I guess I still am, but I have to do something now to make a fresh start.

I won’t go into all the details about everything the preceding months, when I have been away. Let’s just say my anxiety was pretty heavy, and I struggled to keep afloat. Of course, the writing tanked.

But here I am, restarting the blog–again—not with a grand comeback, but with something more simple. Maybe a short thought about life as a special needs parent, as a creative, and, well, just life … daily? Perhaps. Maybe once a week. Maybe in between. I’ll share what I can about life as I experience it, the hard and the beautiful. I’ll also link to some older stories that deserve a little love. But I doubt I will be writing new pieces for a while. I still don’t have that mojo back, much less time, space or energy. But what little I have I will split between chugging on with writing and the occasional ‘thought for blog’, maybe a short story.

So … Today’s thought comes from something very real: one source of my anxiety is the knowledge that, as a parent of a child with special needs, I can’t allow myself to grow old or sick—not really. Because who will take care of him if I can’t? Even when our children are grown, some will still depend on us in ways that don’t fade with age.

There’s no easy answer to that fear. Sometimes I find myself bargaining with fate: maybe it will all end well because I am such a devoted parent. Or something. But then I’m reminded—life isn’t fair, and we don’t get guarantees. You can be religious or spiritual about it, or atheist or agnostic, or not, but either way, the randomness of life is inherent. Or rather, the unpredictability. We don’t know, and probably shouldn’t know, why our fate is going to be what it is going to be.

I sometimes have a strong sense that it is “right” that we got a special child – my son, J – autism and all, but without knowing the why. I had a strong dream right after he was born (by C-section) and when we were shocked, esp. my wife, about how hard it had been. In the dream I saw myself with J at the hospital and then another couple whose child had been just as intransigent as J. And their child had died. “He just did not want to cooperate,” I overheard one of the doctors say. And I knew that they had not had a C-section done for some reason and their child had died because of it. That helped a bit with the pain and shock that we had to go through it.

So I have had lots of dreams like that, far too many for me to dismiss them as pure coincidence. So I have grudgingly accepted over the years that there are apparently some powers controlling or at the very least shaping our fate, or at the very, very least trying to help us deal with our fate. That’s how I interpret it. But does it give guarantees? Not really. To me God, or whatever is out there, still works, far too often, “in mysterious ways”.

So how to deal with that, despite whatever comforts I have with my homemade spirituality? That we could die before we have had some kind of chance to make things work for J? He likely can’t take care of himself as an adult; I doubt that. Maybe … things will happen. And I hope it. But I also have to be realistic.

What I’ve landed on is this: we have to work, every day, on a kind of acceptance, that this is the way it is. And we have to keep doing the best we can. That’s all we can do. If we take care of ourselves and our families, we improve our chances of making something good out of life. Not perfect, not safe—but better.

Because even if you don’t believe in a higher plan, most of us do believe in agency. We believe our choices matter. And if you neglect yourself or your loved ones, or give in completely to despair. I say this as someone with lived experience of depression—it doesn’t help. Doing your best won’t fix everything, but it’s still better than giving up. It will yield better results, to put it bluntly. It always will. (It’s what got me out of hospital when I actually had depression.)

So, maybe the banal but still poignant answer to this heavy, unanswerable question is simply: don’t give up  … ? 

You might never  get assurances. Life may not make sense. But if you keep going, you will get something. Things will get better than the alternative, no matter your situation. Even now, as I dictate this on a walk to get my son the only ice cream he eats (feeding therapy continues), I feel a little lighter. A little more human. It’s better than lying in bed, drowning in dark thoughts. So to start with, just get up and … move. That is the start of not giving up.

If you’re asking, what do I do with the fear?—I don’t have a perfect answer. But I do know this: do your best, every day. Try to accept what you can’t change. And keep showing up. That effort, no matter how small, increases the chances that your child’s future—and yours—will be okay.

I’m working on this every day. And I suspect I always will, however long I have.

And that was my first thought. We’ll see what’s next. 

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Today’s story that needs a little bit of light:

Próxima Estación: Esperanza

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Photo by Marc-Olivier Jodoin on Unsplash