Tag: family

Not His Thing

I read about a hundred books a year. Most of them are audiobooks, which I get for free through the local library. It’s one of those habits that has been with me since I was young, the library as a place, the books as company. My goddaughter is also a reader, and a few months ago we got her a library card. Usually she reserves books online and I pick them up on my way back from school drop-off. But occasionally we’ll go together to browse.

A few weeks ago the library had a book sale. My goddaughter and I left with bags. My son came with us and looked around, but I could see pretty quickly that he wasn’t having a good time. The sale was crowded and overwhelming. Books are hard for him. Reading is hard, comprehension is hard, and a room full of them without a clear purpose is a lot to navigate.

We went back this past weekend, the three of us. No sale this time, just browsing. While my goddaughter moved through the poetry section, I took my son to the computer to look up Rocket League and eSports books. Nothing in stock. We walked over to the gaming section. Nothing caught his eye. But the drawing section was right next to it, and he knew I liked to draw, so he pointed it out to me. That’s who he is.

He was a good sport. He tried. But he was miserable and I could see it.

I walked over and put my arm around him. “This isn’t your thing,” I said.

“Not really,” he said.

“Go sit in one of the chairs and use your phone.”

He found a chair and opened his chess app.

He picked up chess from me. I was playing for a while and he got curious, the way he does. Then Duolingo added chess and gamified it and he had his own relationship with the game. Now he does the lessons and the challenges on his own. We’ll play each other on our phones when we’re waiting at appointments, or sitting for the thirty minutes after his allergy shots. Sometimes we’ll pull out the board and play at home.

Just like that, he was fine.

I watched him for a second before heading back into the stacks. There was something about seeing him settle in that felt right. Not because he had given up, but because he didn’t have to pretend anymore. I worry sometimes that when we do things like this, he thinks he’s disappointing me. That his not being into something I love means he’s falling short somehow. Saying it out loud felt like giving him permission to just be where he was.

Reading has always been a challenge for him. It has to be something he’s genuinely interested in to get him over the hurdle. A Fortnite magazine, a Minecraft guide, something with pictures and a clear purpose. It helps when I read to him, doing the voices, making the connections, reminding him who the characters are and what happened before. Without that scaffolding, it’s a lot to hold.

I think sometimes about what it would be like if reading weren’t so hard for him. Not because I need him to love books. Plenty of people don’t, and that’s fine. But when something is hard, you know it’s hard. He knows it’s hard. And I wonder sometimes what it costs him to be in a place like this, surrounded by something that doesn’t come easily, watching the people he’s with light up over something he can’t quite reach.

It’s not about books. It’s about things being harder for him than they should be. That feeling surfaces in different places. This weekend it surfaced in a library.

He found a chair. I went back to the stacks. My goddaughter kept reading.

It doesn’t run smoothly yet. I’m helping her navigate, checking on him, not really lost in the shelves the way I’d be on my own. But there’s something there. A place where each of us can find our version of being there. Him with his chess. Her with her books. Me somewhere in between, figuring it out as we go.

We’re not there yet. But we’re going.

Nothing, Again

A few years ago, we did genetic testing for the first time. An exome sequencing — not the full genome, but a significant portion of it. They found a variation in the PRICKLE1 gene, which is associated with epilepsy. It looked like it might be something.

It wasn’t.

We were told the science was always advancing. New connections were being made between genetic variations and conditions like his. It would be worth revisiting in a few years.

So we did.

This time it was the whole genome. All three of us — my son, his mom, and me. The test looked for epilepsy markers, indicators connected to intellectual disability, and secondary findings in areas like heart and cancer risk. The technology had advanced. The dataset was larger. There was more to look at than there was last time.

I didn’t go in with much hope. Not because I’ve given up, but because I know where we are. My son is sixteen, and we’re twelve years into our epilepsy journey. We’ve tried most of what there is to try. We know his condition better than most people ever know anything. A clearly-named cause wouldn’t open new treatment doors at this point. It would just be a name.

What I was actually hoping for was not to hear something worse. There are types of epilepsy with harder trajectories than the one we’re already on. A result isn’t always good news. Sometimes it reframes everything you thought you understood.

I got a voicemail from the genetic team. I called back and left one of my own. A few days passed. Then they called me at work.

The call lasted for about five minutes.

The epilepsy markers and the intellectual disability indicators. Nothing found.

She asked if I had any questions. I didn’t.

The secondary findings came back clear for all three of us. No elevated markers for heart conditions. No increased cancer risk. That was genuinely good news. It landed as good news. I noticed that it did.

At the end of the call, she said that science is always advancing. New connections are being made. She said we should revisit in two years.

I recognized the closing. It was the same one from last time, when the PRICKLE1 variation turned out to be nothing. We’ll keep looking. Check back when the data has caught up.

I said thank you. I hung up. I went back to work.

That’s the part I keep coming back to. Not the results. It’s how quickly I moved on. There was a time when a call like that would have carried weight for days. The waiting, the callback, the five minutes of someone telling me we still don’t know. That used to be an event.

Now it’s just a Wednesday.

I don’t know if that’s peace or just distance. I don’t know if I’ve made my peace with the uncertainty or if I’ve just stopped expecting it to resolve. Those aren’t the same thing, even if they look similar from the outside.

What I know is this. He is who he is, named or unnamed. The cause doesn’t change the kid. It doesn’t change what we do tomorrow, or next week, or when the next appointment comes.

In two years, we’ll do it again. We’ll see what the science has found by then.

Until then, we’ll keep doing what we’re doing. Living our lives. Hoping the science advances. Hoping for new medications, new treatment options. Hoping his DBS continues to provide more benefit. Doing what we’ve been doing since the last time we sat down for this test.

Living, and waiting.

In that order.

The Tallest One

The tape measure at CVS didn’t start at zero.

I noticed it when the person measuring him announced a number that was clearly too high. He looked at me with the kind of satisfaction that doesn’t invite scrutiny, so I let it sit for a minute. But the tape was mounted too high on the wall, and the math was off, and eventually I had to say something.

We agreed to wait for an official measurement.

This was February of last year, ahead of a basketball physical. He was close. We both knew he was close. But close wasn’t the same as over, and the CVS number didn’t count.

A few weeks later, at CHOP for a follow-up, the nurse measured him the right way. He looked at me while she did the math. When she read the number back, he was under six feet. Just under, but under. He gave me a face. Not devastated, just pouty. The face of someone who had been robbed of something they were owed.

“I’m sorry, pal,” I said.

We kept tracking it. Every appointment, every person who checked us in got some version of the story whether they wanted it or not. The fractions kept moving. 5’11” became 5’11” and a half, and then more. Every measurement got reported back to me with the same energy a stock trader uses when the market moves in their direction.

Then, at an allergy appointment, the person checking us in measured him on the way in. She did the math. She read the number back.

Over six feet.

He looked at me. “Yeeeeessss, finally!”

She got the short version of the story whether she wanted it or not.

Later, when the allergy nurse came in — she knew us, knew we’d been tracking this — she asked how he was doing. He didn’t mention allergies.

“I’m finally taller than my dad,” he said. “I’m the tallest one in the family.”

I was genuinely happy for him. I was also aware that I would be hearing about this for the rest of my life.

I was right.

The Stanley Cup came first. His Avalanche beat my Lightning in 2022, 7-0, in a game we went to together. He brings it up with the consistency of someone running a scheduled maintenance check. It never gets old for him. It will never get old for him.

Then the height. Then the Fortnite digs. And then a few weeks ago, a new one arrived. He started calling me “my old man.” Probably picked it up from a video or a show, tried it out, saw me laugh, and filed it away as a working bit. Now it comes out regularly, deployed with the confidence of someone who has found a reliable tool and intends to use it.

He does this. He latches onto things that land and keeps going back to them, past the point where most people would move on. I recognize it. I was the same way as a kid, running a joke into the ground because I’d found something that worked and didn’t want to let it go. For me, eventually, necessity taught me to improvise. To read the room and shift. For him, finding something that works and holding onto it might be doing different work. Generating new material on the fly is its own kind of skill, and it doesn’t come easily for everyone.

So he keeps the inventory. The Stanley Cup. The height. The old man. The Fortnite digs.

My response, when he runs through the list, is always the same.

“You’re taller, better looking, and younger. I get it.”

He considers this.

“And better at Fortnite,” he adds.

He’s not wrong about most of it. And he knows I know that. That’s the part he likes best. Not just winning, but winning with my acknowledgment. The scoreboard only counts if the other person can see it.

I can see it.

He’s the tallest one in the family. He’ll remind me if I forget.

I don’t mind. He’s earned every inch of it.