So we’re back home again after quite a trip.

Despite some minor storms, Jon and my mom managed to hold down the fort. I’m incredibly grateful, but now it’s back to me handling things most of the time.

I don’t feel particularly good in my own skin right now, even though the journey—Argentina and back with my father—was better than I expected. I understand a lot more about why he fell apart when I was a kid, especially after seeing the battlefield at Goose Green.

We don’t have as much of life left as we used to, especially my father.

I feel stuck with my kids, especially my son, and I know that sounds dramatic.

But the point is: I’m only 37, but it’s given me a new perspective, that I have to work to make the best of things even if they suck, and especially family.

Whatever I can do to repair it, even if some things may never be repaired. Because, how do I say this without feeling guilty—because I am a special needs parent I feel time has run out already.

My life will never be “free” again.

At least not in the way it was when I was, say, a teenager or in college (the two years I managed!).

So that’s how I feel … but how true is it?!

Let’s see: I’m back home, on familiar ground—our family’s battleground.

And from the first day, I was reminded of this overarching feeling that you sit with, after all the little battles of the day are over: Will this ever get better?

I don’t know if my youngest son will need me for the rest of his life. He might. 

We just had an episode the other day when I spoke to our doctor, who had to sign off on some forms because we applied for help from a local fund. It provides extra money for things like diapers and clothes that my son frequently ruins.

The doctor had to state that my son’s condition is due to autism, and that he may never fully “recover” (I think that was the wording—activists, please hold the pitch forks—we were just trying to get money for diapers).

But yeah, for my part I had some issues with that wording, too, because part of me believes he will get better, even if sometimes I fear he won’t. But the doctor phrased it that way because we needed to demonstrate a genuine and urgent need for the application. Otherwise, we wouldn’t get any help.

There are so many families applying for this assistance. Jon at least has his job, and we’re probably standing in line with people who don’t have that, and who are, in some way, in greater need. But that’s another story.

We’ve applied, and we’ll see what happens. Any extra help is always welcome.

But how do I get the right perspective on my son—on Michael?

That’s what I got right back into thinking about after I came home from Argentina.

(And yes, Dad paid for the trip—in case you are wondering why I didn’t buy a cheap plane ticket with 17 connections to Buenos Aires so I could save for more diapers … )

Point is, it sucks feeling stuck and out of hope every other day. D’uh.

I don´t want to think about the worst scenarios for my autistic son, but … thoughts like those are like cold viruses. You get rid of one, another will come.

Will Michael ever get better? Will he always need this much help? He is seven but has speech like a two-year old and very, very stunted communication abilities in general because he has no real social experience (and how could he, without functioning language?!).

He is super sensitive, has a rampant feeding disorder, and is the perfect example of stereotypical Rain Man rigid thinking in overdrive: Everything HAS to be in a particular order, for example, or his world will fall apart!

Some days, I wonder if he’ll ever get much further than where he is now, but then I catch myself because, yes, he’s only seven.

There’s so much potential for change, and we have resources. Some resources, I guess.

I read stories online about people who didn’t talk at all when they were children, yet went on to become university professors. It gives me hope, but also, should I really let myself cling to these outliers? Should I allow myself to hope for something that might not be realistic?

How do I balance hope and realism? It’s so hard because I can’t let myself sink too deep into the fear that things will never improve—that would be detrimental not only for me but for my son and the rest of my family.

On the other hand, I can’t be seduced by the idea that some miracle will happen and one day Michael will defy all the odds and achieve things we never thought possible.

It’s like the lottery—you might win, you might not, but if you constantly think you’ll never win, that’s not helpful either.

So here I am, trying to find that balance. I guess I’m really talking to myself here because I’ve struggled with this feeling my whole life, even before I had the challenges I’m dealing with now. I used to think everything would go to hell eventually, but maybe it won’t.

Maybe some things will go right. Maybe something will go to heaven, metaphorically, before our hearts do.

I just have to keep looking for that hope. I hope you find it too, if you haven’t already.

I have actually found it, I feel.

But despite that I keep having to look for it every other day

*

– CARRIE, early October 2016

*

Cover photo by Xavier Mouton Photographie on Unsplash

*

77B-260924

*

Song: The Police – “Tea in the Sahara”

*