Having children is a rocket ride that will cost you everything, and still give you more in return.

It probably goes without saying that when I wrote my last post, I was discouraged and worn thin. There are times when this parenting journey leaves me so depleted and isolated, filled with exhaustion and worry and more than a little self pity. Most of the time, when I feel that way, I’ll write something and file it away. Nobody wants to read that, I tell myself. You’ll make people feel awkward and they won’t know what to say. 

Maybe I did make people feel awkward. Maybe they didn’t know what to say. 

Maybe they loved me anyway, and maybe it was worth it. It definitely was for me. 

Writing is my pressure relief valve, and it’s how I make sense of my world when emotions get jumbled up and things are overwhelming. I have no doubt it will save me many times in the years to come, and I’m grateful to those of you who read it, even on the days when it’s disjointed or depressing or downright bewildering.

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With that said, I had to share a few wonderful things that happened last week. I knew they were coming – they had to be coming – and the universe came through and kicked down the can of joy.

My children did a jigsaw puzzle together. If you’ve spent any time around Owen Willis, you know he is the Destroyer of Puzzles, Stacks, and All Composed Things. It’s a perfectly two-year-old role to play, and one he performs with gusto and glee, every chance he gets. Since Owen gave up naps, Tim has barely gotten to do any puzzles, because he never has ten minutes to tackle one while baby brother is distracted. But when Tim asked for a puzzle the other night, I decided to give it a shot. As he happily sorted his pieces and I wrestled with his thrashing brother, something amazing happened. Owen stopped struggling with me and started watching Tim. I picked up a piece and set it down next to its intended spot. “Owen, do you want to try?” He placed it perfectly. He’s never had any interest in jigsaw puzzles, and he did it perfectly. Before I knew it, all four of us were doing the puzzle – Reed and I pulling the intuitive pieces for Owen and chaperoning, while Owen and Tim excitedly built it. It was priceless. 

We took the boys to their first movie in the theater – and it was a huge success. We were looking for fun new activities for Tim’s birthday last weekend, and we decided to roll the dice on a matinee showing of Coco (which was completely fantastic, by the way!). Tim hesitated to walk into the theater; the previews had already started, and they were loud. I coaxed him a few steps into the room, and suddenly, a dog barked on the screen. I thought it was over right then and there. (Tim is sensitive to the sound of dogs barking, and often freezes and covers his ears when he sees one, in case it barks.) I hugged him and guided him to the side of the aisle as he covered his ears. And then somehow, for some reason, he let me coax him to a seat. He covered his ears for about 75% of the movie – but insisted he didn’t want to leave. And the second the credits began playing, and the lights came up, he turned to us both and asked, “Watch it again?” 

After three months of being in love with the Happy Birthday song and blowing out candles for “pretend birthdays,” Tim had not one, but two birthday cakes and sets of candles on his birthday. We did just a big, festive slice from the bakery at home (waiting on the big construction-themed cake for his party next weekend), and then his Uma baked a cake with him, letting him pick flavors and frosting and candles. Every photo from those moments, every video, is just pure joy coming off him in waves and wiggles. Seeing him so happy sends all of us to Cloud 9. It was a beautiful day.

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Like I said the other day, the highs are so high. Small joys blossom into elation, gratitude, and hope all the time. It’s a rollercoaster ride filled with ups and downs and sudden left turns. My mother’s heart is on the upswing again these past several days, and not a moment too soon, as we prepare to start the IEP process for the first time. 

Thank you for being a part of our journey, especially on the days that I don’t come to the keyboard with good news. I appreciate it more than you know.

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.