It started out so damned well. She’d handled the crowds. She’d made it through the seemingly interminable wait with an uncharacteristic calm. She was excited for the show to begin. She’d been hearing the songs for weeks, taking it all in as her sister practiced … and practiced and practiced … at home. She knew that her sister was playing Alice, the mayor’s wife. She knew her lines. She was ready.
The first act went wonderfully. Katie was incredible, lighting up the house as I knew she would. Brooke looked up at the stage, hummed along with the music, paid attention to all of it. Each time her sister disappeared into the wings, she asked, “Where’s Katie?” I assured her again and again that she’d be back soon.
For weeks, we’d been practicing being good audience members. We’d reminded her that we needed to use our listening ears and keep as quiet as we could. It had become a script. “Do we say, “Hi, Katie, how ya doin?” when she’s in the play?” she’d ask. “No, baby,” we’d say, “we don’t.” Of course the script needed to be repeated throughout the show. “Do we say, “Hi, Katie, how ya doin?” she asked. I put a finger to my lips. Rinse, repeat. She was speaking quietly enough that I wasn’t worried. We were doing fine.
She snuggled into my arm. I looked at Luau, he at me. We smiled, thinking we’d done it. She’d done it. There we were, enjoying Katie’s play together.
She tried the bunny noises – hoping to kick off Max and Ruby in Ruby’s library. Again, I put my finger to my lips. She fidgeted in the seat. She began to bounce from her knees to her bottom and back again. Her body ached to move. I squeezed her arms, one by one, section by section, offering the deep pressure that can often manage to ease her need to wiggle. It did. For a minute or two.
She told Luau that the play was too long. She asked to go to the bathroom. Luau, since he was sitting on the end of the row, took her.
They snuck out in the middle of a scene. As they came back in, she ran ahead of him and charged toward the stage. I panicked and stage whispered her name as I got up and scooped her into a gently restraining hug. Disaster averted, she settled back in, but it didn’t last long.
She made it to intermission and then fell apart.
I took her for a walk. I pulled out every trick I’ve got, trying, trying, trying to make it bearable for her – to stave off the brewing storm. But as the winds began to howl and the driving, icy rain whipped our skin, it was obvious — there was nothing that I could do, and nothing that she could do, but hunker down and see it through. Words were gone. Reason was empty. Logic was futile. The storm was raging.
There was no longer even a remote possibility that she could go back into the theater. For her, for Katie, for all the kids who had worked so hard, it simply wasn’t a choice. We headed back to the auditorium to find Luau and figure out that to do.
We got back too late. Intermission was over. The doors were closed, the house lights down. The show had begun again. I told her Mama needed a second to think. She shrieked, then growled. She had no words. And I had no idea what to do. Standing naked in the middle of a hurricane, what can you do?
Before I’d taken her for the walk, Luau had said that perhaps he should take her home. I had wanted to try to find a way for her – for us – to stay. Now I knew there was no other choice.
I asked a close friend who was working the concession stand to stay with Brooke long enough for me to go get Luau. I wrapped my arms around her and kissed her tear-streaked face. I told her how very much I loved her. I told her that she was going to stay right there with J and Daddy would be out for her in less than a minute. I didn’t know what else to do. I was sure that I didn’t know anything that was of use to anyone. But I did know that once she was away from that place, she’d be okay. But Katie would not be okay if I left. She’d been working for this moment for months. It meant everything to her. She deserved her Mama there. I couldn’t leave.
I ran through the dark theater in a low crouch. I reached Luau and whispered something – meltdown, bad, can’t recover, no other choice, home. I don’t know what I said. I don’t know what he said. He disappeared up the aisle to rescue our girl and I sat down, trying not to drown.
I was grateful for the dark. Perhaps somehow it would hide the tears streaming unbidden down my face, hide the two empty seats beside me, hide my anger – no, rage – yes, that’s better, rage – my frustration, my impotence — god, what’s worse than being impotent in the face of a child’s suffering? — I just wanted to HIDE.
It hit me like a freight train. What had I done? Oh my God, what the hell had I done? It was desperately unfair to assume that Luau would take her home. There was no discussion. No opportunity for him to say no. What was he going to do, debate with his crying wife in the middle of the school play? I’d given him no choice. I’d cornered him into leaving.
I nearly choked on my tears, using every bit of control I had left to keep from gagging on an errant sob. I was wrong. Nothing was right. The entire situation sucked.
I knew that Katie would be back on stage soon. I knew that had to get it together for her. So too, I knew that she’d see those painfully empty seats and know that they were gone. Know that we weren’t there as a family. Know … Again. We’d tried, baby, I willed her to feel the words – wherever she was. We tried.
Soon enough, she came bouncing out onto the stage. Her eyes locked in on me and I did my best to reflect her wide grin. I winked at her. I love you, sweet girl. Please know how much I love you. How much Daddy, Brooke and I *all* love you.
A little voice in my ear snapped me out of my revery. I would have sworn I’d heard a whispered, “Mama.” I was giddy with the thought that somehow Luau had miraculously calmed Brooke down and brought her back.
I turned to the little boy who must have said, “Ma’am?” and nodded, yes, he and his friend were welcome to the seats. No, no one would be coming back for them.
Katie skipped back around to the front of the stage. She looked to me again, then, as if in slow motion, I watched her eyes move to the right and take in the two little boys who sat where her Daddy and sister should have been. I’m sorry, baby, I’m just so sorry.
The play ended with all its attendant fanfare. When Katie finally came out, she asked what happened to Luau and Brooke. “I figured,” she said. I told her that Daddy had left so that I could stay. That it was really, really hard for him to miss it. “Mama, I get it,” she said.
The tears just wouldn’t stop. No matter how many times I’d apologized to Luau, no matter how much praise I’d lavished on Katie in a flat-footed attempt to make up for – well, all of it before sending her off to bed, no matter how long I lingered over Brooke’s beautiful sleeping form, whispering Mama love into her dreams, telling her how sorry I was that it was all so hard for her. The tears wouldn’t stop.
A friend texted me. You ok? As I poured my answer into the keys, I found myself committing what I’ve been so well taught by my autistic friends to believe is the most cardinal of sins — separating autism from my girl. But I was angry and I was sad and I was frustrated and I was tired and I was tired of being so goddamned tired and I was tired of feeling like there’s never a right answer but only the least wrong ones and I was tired of recon and planning and strategizing and failing and watching it all go to shit anyway and I was tired of hurricanes and crisis management and post-storm clean-up.
I was tired of watching my child struggle in a way no child ever should.
So I did it. I did what I’ve been so well taught to never do. I railed against the thing that made it all so God-damned hard. I sent a small group of mama friends an F bomb laden tirade. I’m tired, I said, of mother#$%&ing autism.
I debated whether or not to post this. For so many reasons, not least of which is that, as you know, I take great care not to demonize autism. There is so much in this life that is beautiful and sweet and triumphant. There is so much to celebrate and so much that, not just despite autism, but because of it, we, as a family, get to experience more vividly and feel more deeply and enjoy more exquisitely than those who don’t know life through its lens.
But that doesn’t mean that sometimes – just sometimes, it doesn’t really suck. And it’s got to be okay to say that. For me, for Luau, for Katie, but, most importantly, for Brooke. The other night sucked for her. It just did. And it sucked because autism made it hard. She has to have the freedom to say that out loud if it’s what she’s feeling.
I love my girl. I love her from her head to her toes and I love her exactly how she is THISEXACTVERYSECOND. Anyone who has been reading this blog for more than a minute knows that to be true. More importantly, SHE knows it to be true. But I wish that her life were easier. And although it always starts and ends there – with HER, her life is, by extension, OUR life as a family. And I wish that that were easier too.
And that’s okay to say. It has to be.
Even, once in a while, in a safe space, it’s okay to say it with an F bomb or two.
A couple of notes:
~ Brooke wanted to go to the play. We’d given her the option of staying home and she’d refused. There were two performances – she asked to come for one and sit out the second (the following night.)
~ Next time, we will have a family friend (whom she adores) on call. We’ll buy him a ticket and he’ll be there to take her to hang out in a quiet place if necessary. I think simply having the safety net will help a great deal – she will know that she has options. Thank you, J, for offering.
~ We went back the following night and saw Katie perform. She was nothing less than brilliant.