Susan's Blog

Sunday, June 14, 2015

Really Tough But Really Sweet

It felt like the worst mistake. We were in the car today, the five of us, headed to the USS Constitution Museum and the ship itself. Headed there, instead of Cape Cod, which is what we had decided on yesterday. But Ned woke up feeling sick and not up to the whole Cape thing. So decisions were made — without Nat. He got told and I can only imagine how it must feel to always be told what you’re going to do. Self-Determination amounts to You Can Choose Between These Things.  It makes my throat burn with the anger and frustration I felt in third grade math.

Nat was wound so tight in the car ride to the Harbor that he was pounding his knees with his fists, shouting things out that kind of made sense: “Lunch at McDonalds!” [which is what we do when we are driving to the Cape] “Ice cream at JP Licks!” [which is what we told him he’d get if he was “calm.” So patronizing, but necessary.] “Mommy will go food shopping!” [sorry, no explanation]. I offered to turn around and stay home with him. My stomach was hurting, my jaw was clenched, my face was puckered into itself. I could see Ben in the rearview mirror looking nervous and a little mad. Max was quiet — I don’t know what he was feeling, but he had wanted to go with us. I thought about how we hadn’t even given Ben a choice of coming with us. It was a Family Outing, part of Dad’s Birthday Celebration. Self-Determination doesn’t apply to Ben, I guess. This made me sad, too. I wanted to scrap the whole thing but it was for Ned. I wanted this to be good for Ned, who never really enjoys his birthdays. Maybe this is why. We try to have family stuff and it becomes so stressful, even when it has nothing to do with Nat. Sometimes it’s me. Or someone else.

It seemed like a really bad idea to keep driving. Nat would become quiet, but then would get right back to talking fast and furiously about all the things that we were doing wrong. “Nat, what do we need to do so you can get ice cream?” Ned would ask. “You be good,” Nat said, which made me want to cry. He’s 25. He does have significant intellectual delays. But he doesn’t have delayed feelings. It makes my heart one big blood-drenched piece of raw old meat.

We parked, walked to the ship. Nat was far ahead, as usual. We got to the ship, and Ned suddenly took off with Nat, explaining something to me but I didn’t catch it. I know I felt relieved just to have Nat being away for just a little while, so I wouldn’t have to be worried he would blow. Ten minutes later, they were back, with Nat staring contemplatively at the American flag snapping in the breeze. Just by the way he looked, with his arm bent behind his back and the other hand holding the elbow, I could tell he was feeling better. Ned said, “I’m sure that was a huge stressor.”

“What was?” I asked.

“Oh, he really had to pee. Like crisis level,” Ned said. “As soon as he finished I could tell he was fine.”

And so he was, and then, so were we all. The air softened around me, and Max and Ben went back to talking about rendering and other computer-generated activities while staring at the dam at Charlestown Navy Yard. Ned read every sign, walked eagerly through the little museum. We stayed as long as we wanted, breathed in the history and the salt-tar smell of the dock, and then drove to a JP Licks for ice cream. There was a huge list of amazing flavors. Ned had mint chocolate chip, I had cookie-cake batter in a white chocolate dipped cone, Max had peanut butter in a pretzel cone, and Benj had cookies-and-cream. And Nat chose coffee-cookies-and-cream with caramel sauce.

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How is it I can stay riveted to every word, swell with the raising stress, I know all too well, and then exhale relief over his peeing-and the signs of shifting?
Oh wait I know why-I live it too.

Sometimes just having a witness to a thing is the greatest gift.
Susan I bare witness and you make me love you for that. And without uttering a word-I know you are a witness to me/mine too.
Soul mothers… that’s what we are you and I.
(And many many more mothers out there…)

— added by Lauri on Monday, June 15, 2015 at 9:49 am

Lauri: <3

— added by Susan Senator on Monday, June 15, 2015 at 10:05 am

You’ve just described so many of our outings, I was so relieved with the way it turned out! There’s just so much guesswork with Nat and Justin, it’s so difficult sometimes. Thanks for sharing this!

— added by kim mccafferty on Tuesday, June 16, 2015 at 9:22 am

It just never seems to get easier, does it, Kim?

— added by Susan Senator on Tuesday, June 16, 2015 at 9:23 am