Today at lunchtime, Holden walked into the kitchen and sat down in the chair across from me:
“So, Mom, I’ve been doing some thinking,” he said.
“Really, Holden? What have you been thinking about?” I asked.
He looked at me, silent.
I looked at him, eyebrows raised.
“You’re having thoughts? What’s on your mind?” I tried again.
He looked at me, smiling.
I looked at him, waiting. I imagined what his thoughts could be about. Swimming? Summer school? Lunch options? The working status of his iPad that he took with him into the shower in the 15 seconds I was upstairs to switch laundry? An analysis of the literary allusion in a much-watched television show, Ben 10 (Ben Tennyson)? His own opinions on the use of narrative in architecture that he heard his stepfather, Brian, and I discussing yesterday?
He never finished his thoughts. But I wrote down that lovely, lovely, lovely question. So round in its completeness. So rich in its possibility. He’s having thoughts. He just can’t get them out.
I remind myself of these bright moments often because the difficult moments can easily crowd them out. I think this is because of the always-present stress and the acute moments of crisis that occasionally arise can send me into a tailspin. The stress can crank up and up and up and even when there’s nothing in the present moment to be stressed about, I can still feel stressed. One of the predominant words I’ve started to use in relationship to Holden’s LKS is “fluctuate.”
Take, for example, Sunday morning. The three of us—Brian, Holden, and I—left for long bike ride. (Brian attaches a ‘half-bike’ to his bike so Holden can pedal and participate.) When we got to the Dakota Nature Center, we decided to rent a canoe. All life-jacketed up, Holden sat in the middle of the canoe on the floor while Brian and I paddled. I was 90% sure we’d land in the water (stress level activated). Sure enough, five minutes into the jaunt Holden wanted to stand up in the canoe. He stood halfway up and paused. We talked him back down. Then, he put his hand in the water and just enjoyed the ride for what seemed like a long time—ten minutes, perhaps? I took it in: the breeze on a sunny July day—a perfect 75 degrees; a cloudless blue sky; the smell of cut grass; a fish jumping out of the water; the soft splash of the canoe paddle; various birds, patches of wildflowers along the perimeter of the pond. Even if we go in now, I thought to myself, I will still have these ten minutes.
I was astonished when we made it through a 15-20 minute canoe trip around the pond and back to the shore without Holden jumping in or the canoe tipping. (Let me remind you how “impulsivity” and “decrease of the ability to inhibit inappropriate behavior” are issues with over 50% of kids with LKS and Holden for sure). We rode all the way back into town, where we stopped for coffee and a treat. Awesome.
After that, of course, the day fell apart. A trip to get sandwiches was stressful at best. Holden’s whining increased. I’d planned on taking Holden to see “Shrek, the Musical” that was being performed on campus. Brian said, “Are you sure taking him to the theater is a good idea?” I replied, “I won’t know until I try.” I soon found out. We tried walking across campus (we live on the edge) but Holden sat down halfway there, stretched out on the concrete, and refused to stand up. Yes, he wanted to go to the theater. He just wouldn’t get up and walk–there or back home. He sat on the ground for ten minutes. I just couldn’t motivate him to get up. Brian picked us up and Holden rested on the couch for a couple of hours watching a movie. Still, it took me hours to unwind from the botched walk, etc. (The “etc.” to be honest was two swings at me followed by a deliberate stomp on my sandaled foot.)
When I reflect on the weekend, it happens like this: A montage of snapshots and mini-videos that capture the “bright moments”: canoe trip, bike ride, Holden listening to music at the Arts Festival (the band played “You are My Sunshine, which I always used to sing to him when he was a baby,) etc. But these moments happen amidst stress—they are, indeed, glued together by distress. My body reminds me: difficulty sleeping, aching back from trying to pick Holden up, faint bruise on my foot. Neither the distress nor bright moments can be elided. And I guess that’s just the way it goes for now.