The most heartbreaking experience I have ever had has not been the loss of close friends or family.

It’s been when my seven-year-old autistic son cried his heart out as if he was about to lose everything that mattered to him, and I couldn’t help him.

Yet I could.

All it took was for my husband and me to decide to go home three days early from a cabin we had rented in Kachina for a family vacation.

We thought that Michael, who doesn’t like change, would still be okay with going to another cabin than we usually use—just in the same area.

We desperately needed some kind of holiday, even though it wouldn’t be a real holiday because we would be preoccupied 99% of the time trying to make things as low arousal as possible for Michael. His feeding disorder and sensory problems were just the beginning of a million other issues, but never mind that—we were ready to tackle them.

What we weren’t ready for was losing $1,000 by going home early—money we had saved for months.

We lost the opportunity to escape our dead-end suburbia.

(Do you know what it feels like to live in a prison that’s just a normal place like a house you’ve been in for too long? Because you couldn’t go anywhere due to your child’s problems? And because you seldom have enough money for anything ? Jesus … )

Anyway, like I said, Michael doesn’t like change, and sometimes it’s two steps forward and one step back with him. Most of the time, actually.

He had been able to sleep in places other than our home for some years, and we could visit friends and family overnight. Then, all of a sudden, that changed.

It took us three very painful attempts to figure out that this was the new situation and accept it.

The first time was when we went to Los Angeles to visit my mother and stepfather. He screamed and cried all evening and didn’t want to be there, even though he had wanted to be there earlier.

It wasn’t a problem before.

Later, we went to a small cabin near the lake where Emma is sailing for just one night, and it was the same.

Then we thought, hey, let’s go to Kachina.

He had been there before, so we thought it would work out, but it didn’t.

Early in the morning, after only 24 hours, we were packing our car. The other families stared.

Correction: their beautiful, normal kids laughed and played while their parents stared.

Michael was crying, shaking, and repeating our exact address over and over, saying he wanted to go home.

Of course, we couldn’t stay.

I really love Kachina. I love the fir trees and the special quiet.

It’s the nicest place I know next to Sedona, but what can you do?

Aside from the money we don’t have, which we lost, there was a deep sense of loss and grief. We couldn’t even have the semblance of a normal vacation anymore.

That has been taken from us for reasons we don’t understand.

Michael changed again, and we don’t know if it will ever be possible to go anywhere with him overnight.

It probably will be, but how many years will it take? I don’t know.

It feels like forever.

And then there is the fallout. There is always fallout.

What should I do to find some kind of shelf inside myself to place this experience on, to be able to let it go?

I don’t pretend to be an expert, but I’ve been a special-needs mom for seven years.

Still, it just feels impossible sometimes.

Anyway, here’s what I came up with for this particular battle:

There is not a one-size-fits-all solution, but I feel very strongly that …

1) I have to find a positive slant to the outcome I can believe in, or it will eat me up (by “it” I mean the terrible experience, the failure, the grief, the loss, etc. – it or its children will eat me if I don’t try to find some kind of silver lining, however pathetic.)

Doesn’t matter if others think it’s BS what I find; I just genuinely have to believe in it.

3) Train focusing on what I can do. it is not a kind of religion, karma, or fake positivity. It is just something that works. Like an injection against the flu.

4) Stop resisting. Yes it did happen to me . Tough. But accept what happened when I can and then let go.

5) Appreciate—really f… appreciate— myself for trying to dream and not give up what is good (in our case, the dream of going on a semi-normal holiday).

Be a good example for others in this way: Find alternate solutions as close as possible. Maybe next time we will try to stay overnight with Michael at a friend’s house a few blocks away and train that and then expand from there. Maybe we can take trips just for one day without staying all night anywhere. Be creative. (And then let the big fucking rest of what could have been go.)

6) Be grateful for what I learned even if it hurt like hell. If nothing else, this bitch of an experience has really hammered home one thing for me: What My Son Needs Now. I have a much clearer understanding of his needs—even though I thought I already had that. But, like I said: He changed. Again.

So even if it is a bitter pill, it seems like it was somehow a necessary pill.

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Michelle, of all people, helped me capture all those thoughts and feelings write them down and make me feel I had, well, accomplished something. Then she told me her sclerosis had flared up.

And then we drank a lot of cheap wine and and took turns crying the rest of the evening.

I believe her, though.

Not just because she forgave me for calling her a bitch at the party that seems like a million years ago. But because of what happened when I came home.

“And he looked really blissful,” Jon said when I was finally back … “—I think it was because he fell asleep in his own bed! Just that little thing …”

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I don’t know what to do from here since it feels essential that Michael can at some point get out of the home to have a life of some kind…

Not in the least when we’re not here for him anymore.

But what my husband said about Michael that evening after we came home from Kachina and I had rushed over to drown my loss in Michelle’s atrocious Beaujolais … what he said about my son finally falling asleep like that … that broke my heart.

A second time.

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CARRIE, summer of 2016

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Cover image by Jen Theodore

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Suggest a song in the comments that could be a soundtrack for this story!

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