Category: parenting

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.

When He Looks at Me

I’ve noticed it for a few years now.

He’ll say something, or try out a joke, or make an observation about something we’re watching, and then he’ll look at me. Not a glance. A look. He holds it for a beat longer than most people would, waiting for something to come back.

I noticed it gradually, the way you notice most things about your kids. Not a single moment but a pattern that eventually became impossible to miss.

I tested it once or twice. Not in a mean way. There were moments where I could smile without making eye contact, could let the beat pass without responding, and I’d feel him still looking. Holding. Waiting. A few seconds longer than felt accidental.

I asked him about it once. Why do you do that?

He didn’t know. That’s true for a lot of things he does when you ask him why. The awareness required to answer that kind of question hasn’t fully arrived yet, and may take time, and may look different when it does.

So I’ve been left to wonder on my own.

Part of it is probably simple. He wants to see if he made me laugh. He wants to know what I think about what he just said. That’s not unusual for a teenager, or for anyone. We look at the people who matter to us to see how we’re landing.

But I carry my own history into everything I observe, and I can’t always separate what I’m seeing from what I’m afraid of seeing.

I was made to feel small. Not by one thing, but by enough things over enough years that I spent a long time wondering if I mattered. If I was visible. If anyone was actually registering that I was in the room. I know what it feels like to look for confirmation that you exist, and I know how much energy that takes, and I know what it costs over time.

When I see my son hold that look, I feel two things at once.

I want him to feel seen by me. That part is easy. I am always looking. I notice everything. He does not have to wonder whether I’m paying attention, whether his jokes land with me, whether I think what he said was interesting or funny or true. I am here. I see him.

But I also want more than that for him.

The world was not built for him. That’s something I’ve written about before and something I think about constantly. People with his needs are often invisible in the systems and spaces they move through. He has to work harder to be noticed, harder to be understood, harder to be taken at full value rather than reduced to what he struggles with.

He is so much more than what he struggles with.

He is kind and funny and specific and stubborn in the best way. He has opinions about hockey teams and strong feelings about Fortnite and he named our dog after a winning moment in a video game. He looks at his father to see if a joke landed, and when it does, the satisfaction on his face is complete.

I don’t want that looking to come from the same place mine did. I don’t want him scanning faces for proof that he’s real. I want him to know, without having to check, that he is seen.

Not for what he carries. For who he is.

Maybe that’s all he’s doing when he looks at me. Maybe he just wants to see me laugh. Maybe it’s nothing more than that, and I’m the one making it heavy.

I hope so.

But I keep looking back.

Where Are My Boys

Poodles have hair, not fur. Like most hair, it grows in a certain direction. Dogs generally like to be pet in the direction their coat grows, not against it.

My son didn’t notice for a long time.

When Emmet first came home, my son was eleven. Emmet is a service dog, trained specifically for children with epilepsy. He was a year and a half, already trained, already knowing his job. He knew how to lay across a person’s lap with his full weight, the way a weighted blanket settles. He knew “over” and “lap” and how to read a room. He was ready.

My son wasn’t sure what to do with him.

The petting was the first sign. He would reach for whatever part of Emmet happened to be closest and move his hand in a way that looked like petting without quite being it. He wasn’t feeling Emmet. He was mimicking the shape of what petting looks like. And he’d go against the grain without noticing, his hand moving in whatever direction felt natural rather than the direction Emmet’s hair ran.

They would be in the same space, close enough to touch. But there was something between them. An invisible distance that kept the contact from becoming connection.

Emmet is trained to comfort. His weight across your lap is supposed to mean something, to regulate, to settle. But when he’d do “over” and lay across my son, I don’t think my son felt it. The command worked. The dog complied. The comfort didn’t arrive.

We kept at it. We practiced in the kitchen, the three of us, Emmet running through his commands while my son learned to offer the right reward. A treat, and then his hand in the places Emmet actually likes. Under his chin. Along his neck. Near his ears. The top of his back.

And then one day Emmet leaned in.

My son was petting him the right way, in the right place, and Emmet pressed into his hand the way dogs do when they want more of something.

“See how he’s leaning in to you? That means he likes it.”

My son noticed. I could see him register it. The idea that the dog had a response, that something he was doing was causing something in return. It was a small thing. But it was the first time the contact went both ways.

Viktor joined the family a few years ago, ten weeks old and completely feral. My son helped name him. We asked for ideas and he said “Victory Royale,” the winning moment in Fortnite, which is how we landed on Viktor. The name fit. He has been chaos ever since.

He’d rocket into whatever room my son was in and be immediately in his face, all energy and no concept of personal space. My son didn’t know how to play with dogs yet, not really. He’d try to do what he’d seen me do, but the timing was off and Viktor was relentless. It was too much.

Viktor also, on more than one occasion, relieved himself on my son’s bed. This did not help.

But time passed. Viktor calmed down, somewhat. My son got older. And slowly, something started to change.

He started throwing the ball for Viktor. He learned that Emmet likes it when someone holds a nylabone while he chews, and he started doing that. Small things. Quiet things. Things I noticed without saying anything.

Then the dogs started showing up in his room. I’d go check on my goddaughter across the hall and hear him from his doorway, pleased about something. The dogs had migrated to his bed. He’d send me pictures from the couch, one or both of them pressed against him, settled, staying.

Now when he comes home, he wants what I get.

He comes through the door and looks around. “Where are my puppies? Where are my boys?”

The dogs come to me first. They usually do. But I redirect them, and eventually they split. One finds him, one stays with me. He bends down toward whichever one comes his way. He doesn’t get on the floor the way I do, not yet. But he bends. He reaches. He waits for them to come to him.

And they do.

It took four years. It didn’t look like bonding for most of them. It looked like proximity without connection, effort without payoff, a boy and a dog in the same room who hadn’t figured out what they were to each other yet.

But they got there.