I promised honest (and ugly and awkward and open-ended), and here it is.

Just for today, I need a respite from mom life jokes and healthy children. I need space to scream at the top of my lungs how much pain autism has brought into my home, without someone telling me to hang in there because it gets better.

It gets better one agonizing millimeter at a time, and we have hundreds of miles to go.

On days like today, I worry we’ll find the bottom of my emotional reserve years before we find basic, livable homeostasis.

No one but my husband is living this experience with me, and no matter how much time other people spend around my kids, or what challenges they have grappled with in their own families, they just. don’t. know.

I have no neurotypical child, no one so low maintenance and predictable as a healthy toddler or preschooler. I have behavioral therapy and speech therapy and regional centers and IEP planning for two. Therapy homework for two. Copays for two.

Two children who feed off each other’s erratic energy and stimming. Two children who will attack us or each other at the slightest provocation, often for reasons we can only guess at. Two children who rarely answer when we speak to them, who can’t answer a question as simple as, “How was your day?”

Two children who have no fear and are mostly indifferent to pain.

I don’t know how to explain that to people. You would have to live it. On a bad day it’s like a echo chamber of mania, broken phrases on repeat, skipping records of compulsive, insistent behaviors. Nothing you do is enough, nothing breaks through, and part of you wonders, are they really in there? Will I ever reach them?

And you know they’re in there, and you reach them for moments at a time, and you remember it’s all worth it. And then you go back to being exhausted and in pain.

I drove almost a thousand miles last weekend and cried my eyes out at a funeral, and it was easier than being at home all weekend with my kids.

I feel like a monster for saying that, but it’s true. I hated how I felt, but I had the space to be in that moment. I wasn’t being bitten or pinched or scratched or kicked or head butted or screamed at. No one hit me with a heavy toy or melted down because I opened a door or turned on a light switch myself. No one stared at me blankly – or didn’t look at all – when I tried to engage them in conversation.

And for all the pain of this present I’m living in, the future looms ahead. Tim is well on his way to bigger and stronger than me, and I’m terrified that we’ll reach that point before he develops better communication, and better self control. My friends are starting college funds for their kids; I am anxiously awaiting California’s launch of the CalABLE program to set aside funds for their futures, however uncertain. I wonder if they will ever live alone. I wonder what will happen to them when Reed and I are gone.

So I live day by day, moment by moment, wondering how we’re going to make it through and wondering why I’m not better at this. I’m not strong enough, not brave enough, not patient enough. I’d love to tell you I’m this saint that just takes all the abuse and disappointment and sheds a few tears after bedtime, but it’s not true. I yell, all too often. I get impatient, I wonder why it has to be hard, I wonder why me, why us, why them. I wonder if someday researchers will prove they are autistic because of something I did or didn’t do, and I wonder how I’ll ever get past that.

I don’t have any answers. I guarantee you tomorrow one of them will do something wonderful, something amazing, and I’ll feel the glow that carries me a few more hours, convinces me it’s not so hard.

Today, Owen handed Tim a truck to play with, and it made me feel so amazing and optimistic that I almost didn’t write this post, even though it had been brewing in the back of my mind all day. The highs are so high. And I don’t take them for granted.

But the highs are not the whole story, and they are not my whole truth.