That’s Not My Name

swimBeing lost is a prelude to finding new paths. –Mary Karr

I sat on the bench alone this time, The Husband policing Little Brother on the playground outside while The Kid was gently led toward the water. He cried again, but I managed to hear the difference this time: not as loud or urgent. Within minutes, he was bobbing gently in his instructor’s arms, smiling while the water held them both.

Time for a meeting of the Saturday Morning Swim Club.

There are different names for these appointments: going forward, ours will be the Wednesday Afternoon Swim Club. There’s Monday Morning Horse Therapy. For a long time there was Thursday Afternoon PT, Tuesday Morning OT, All the Damn Time Doctor Visits, Annual MRI. Anything that takes place at Children’s Hospital, really. I like to refer to all of it under one umbrella: The Society of I Didn’t Sign Up for This Shit.

An older man approached and sat, ignoring the Introvert’s Golden Rule by which I abide: “Thou shalt not behave as though the other exists.” He launched into a series of questions–which one is yours? How old is he? How long you been coming here? Where are you from? He pointed out his grandson, who was playing happily in the pool. The man seemed unruffled by all of it. Maybe I’ll be like him when I grow up. I didn’t cry this week, so that’s a start.

TK made it through the lesson without any repetition of the prefacing tears, and I felt the progress seep into my muscles, relax them a bit. I added it to the breakthrough in potty-training, plus the new words he’s speaking every day. An equation that landed us in the black. It was a good day.

It doesn’t take long to undo those.

The girl in childcare at the gym stared at him as they ate their snack, and she turned to the teacher: “My mom says you’re supposed to close your mouth when you eat,” she proclaimed, throwing her shade all over the table and tossing me some side-eye. I ignored her outwardly and responded inside my head: “Listen, bitch-in-training. I know you. I used to be you. Congrats on the manners. But we’re dealing here with a little thing called Low Oral Tone. A bit of Dyspraxia. A Tongue-Clipping Surgery thrown in for fun. So you can take your Rule-Following Award and insert it in the location of your choosing because one day you’re going to find that it’s not following orders that saves your life–it’s falling apart that does. And your haircut is bad.”

I turned to TK and we grinned at each other silently. It’s possible he reads minds–he can read every damn thing else.

The next day was a playdate and lunch with some peers of the kids’ and mine–peers being a word I like to throw around when I forget that we’re on a different path than most. The time ended with some piss on the floor and my back in knots, hyper-vigilance coursing through my veins alongside the usual anxiety in a cocktail that left me exhausted, a mockery of the parent I’d planned to be. The one I’d proclaimed I would be.

There is less proclaiming these days. I’m not saying who I am; I’m finding out who I am.

And with every broken promise, every failed plan, every rule that’s fallen by the wayside, there is something new. Something painful, at first, tears falling after playdates and birthday parties and hard days; the grief that accompanies the closing of one door to be gently led to another–to the water. There are new friends, ones who know, who text back with that message and their own similar stories so that you realize, finally, you’re not the only one sitting on this bench. There are new appointments: fewer scans, fewer evaluations, and more mornings at a barn. More sessions by the pool. There are new definitions: joy was once happy hours and dinners out (still is); now it’s also the sound of urine hitting porcelain after fourteen months, the grin on both our faces, and the sound of angels singing that I could swear I hear from where we sit in the bathroom.

There are the moments when I abdicate my Anxiety Throne and get to be the calm one: when we’re in traffic (the one time TH loses it ever); when TK needs a quiet voice to lead him away from the elevators and something within me that I so did not generate myself changes the way I even talk so that I can reach him. There is the quiet voice that talks to me, the hand gently leading me away from all the hotels where I try to keep booking a room to live in–hotels with names like Guilt and Fear–and the voice tells me again and again: “You don’t live here. I’m taking you home.”

And there are the moments when he changes too–when the anxiety recedes and he plays quietly with, yes, a peer, and I realize that in spite of all he’s been through–hell, because of it–he will help others find out where they belong. Who they are. He will be a spot of peace, of calm for someone. For a lot of someones.

There was a moment this week at a meeting of what was formerly (and still often) called The Society of I Didn’t Sign Up for This Shit but is now more routinely called Horse Riding. The flies were buzzing all around me and the stench was pungent–maybe even more than usual. I couldn’t figure out why I had to be stuck in such an unchangeable position, covered by mosquitoes and reeking of waste. Then I looked below the bench and realized there was a pile of dog shit beneath me. And I saw that there was another bench just a few feet away–a new spot just waiting for me to fill it. I got up and moved and knew I wouldn’t be alone there for long.

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