Tag: family

Alone Together

I don’t know where you’re going, but do you have room for one more troubled soul?

That’s a line from the Fall Out Boy song Alone Together. The title itself is an oxymoron. How can someone be both alone and together at the same time?

There are a lot of ways to interpret it. Some people hear it as being about drugs. Others think it’s about two people in the same physical space, but still feeling isolated and apart.

That idea feels familiar. During the pandemic, my family and I were together in the same house, but often living separate lives. We ate in different rooms. We passed each other in the hallway with only transactional conversations. We were together, but we were also alone.

Sometimes, that distance can feel easier. It can be exhausting to be emotionally available all the time, especially when there is no break or separation. But if that becomes the norm, it’s a dangerous road. The road to ruin, as the song puts it, “and we started at the end.”

There’s another way to look at the phrase, though. You can also be physically alone from the rest of the world, but emotionally together with someone else. That’s how I often feel with my son. We are separate from much of the world—by circumstance, by hospital stays, by the realities of epilepsy—but in that separation, we are together. Us against the world. Not really alone at all.

That’s the tension at the heart of the song. It’s also the tension I feel as a parent and caregiver. Lonely, but not alone. Together, but sometimes separate. Finding connection even in isolation.

Let’s be alone together. We can stay young forever. Scream it from the top of your lungs.

The Cleverness of Me

“Oh, the cleverness of me.” (Peter Pan, Barrie 1911)

In Peter Pan, after teaching Wendy and her brothers how to fly, Peter proudly declares, “Oh, the cleverness of me.” It’s a line that sparkles with the joy of discovery but also reveals the limits of his childlike perspective. Peter delights in his own ingenuity, yet he lacks the maturity to see the risks or responsibilities that come with it. That mix of brilliance and blindness captures both the wonder and the danger of living only in the moment.

I am constantly amazed by my son’s ability to devise clever creations. He often comes up with inventive workarounds to the challenges he faces, ideas that make me marvel at the way his brain works.

He made a custom case for his phone using cardstock and markers. He created a marble run by tracing pieces of track on paper and taping them together. He taped a “lock” on his door so that he could use the key that Santa gave him. And he finds clever ways to win the games of skill at the arcade.

But like Peter, he doesn’t always have the executive processing or life experience to recognize when those solutions carry risks or could be dangerous. He figured out how to use my wife’s devices to disable the screen time and parental controls on his devices. He installed different browsers on his computer when he was blocked from visiting inappropriate websites. And he finds interesting places to hide the evidence from a candy binge.

Eventually, though, he gets discovered and we have teachable moments as I expand the ways I need to monitor his behavior as he expands his bag of tricks. In these instances, his behavior is generally age-appropriate, although the technology makes it easier for him to have access to inappropriate content.

But it also makes it easier for him to find himself in dangerous situations. The websites he visits are also full of predators and scammers looking for teenagers to manipulate and extort, and the reality is that my son is more susceptible than a typical teenager. His emotional immaturity and challenges with executive functioning often prevent him from fully understanding the dangers associated with using his cleverness to bypass the safety measures that we put in place.

It’s a reminder of how thin the line can be between brilliance and vulnerability, and how much he still needs us to guide him.

However, I struggle with striking a balance between celebrating his cleverness and protecting him from dangerous things, and celebrating creativity when he lacks the maturity to recognize its limits. Most of the time, I lean too heavily on protectionism, and it feels as if I am constantly criticizing him or pointing out the flaws in his creativity. I tell him how his idea won’t work, or how to make it better. I don’t spend enough time encouraging him to experiment with his ideas and continue trying to figure things out.

He will need that cleverness to adapt to a world that wasn’t built for him. He will need that ingenuity to navigate challenges that most people will never have to face. My job isn’t to stifle it in the name of safety but to help him learn how to use it wisely, to guide him as he figures out when to leap and when to look first. It’s not easy to let go of protectionism, but I know that if I can nurture his creativity instead of only policing it, that cleverness—the same spark that sometimes gets him in trouble—might one day be the thing that helps him fly.

Together, in His World

I stood behind my son in a deep cave. A torch on the wall behind us was the only light, casting our long shadows down the tunnel ahead.

“What are we looking for?” I asked.

“Diamonds,” he said.

We continued forward, using our pickaxes to clear the stone blocks in our path. The deeper we went, the darker it became. Occasionally, we’d hit pockets of lava or veins of redstone. I mostly followed his lead—he knew where to dig, where to place torches, when to mine, and when to run.

Then I saw movement ahead. I hung a torch on the wall and, when it ignited, I saw a very large spider walking toward us.

“I hate spiders,” I sighed.

My son didn’t hesitate. He didn’t flinch. While I stayed back, cautious and reluctant, he moved forward.

That’s how it’s always been. In these games, in these worlds, he becomes someone else—bold, decisive, brave. He leads with purpose, unburdened by the hesitation that sometimes follows him in the real world.

I raised my head to see him at his computer, locked in, defeating the red-eyed monster. With the path clear, I looked back down at my iPad, and we pressed on in our quest.

It had been a while since we had played in the same physical space. Lately, he’s been focusing on his streaming “career,” diligently trying to build an audience on Twitch. He’ll come home from school, finish his homework and chores, head to his room, and close the door.

I’ll watch his stream. Sometimes he plays with friends. Sometimes alone. Sometimes we play together—but two floors apart, connected only by FaceTime or in-game audio. It’s something, but it’s not the same.

Today was different.

Minecraft is one of the few games where he takes the lead. He’s the expert—he builds the world, sets the rules, and guides the mission. He lights up when he shows me what he’s made—a house with hidden doors, a rollercoaster that goes through a mountain, or a massive Captain America shield reaching impossibly high into the sky.

In the real world, everything takes extra energy. Every day is a challenge that he doesn’t always show. The constant pressure to keep up, to interpret unwritten rules, to manage the invisible toll of his condition—most people wouldn’t notice it, but it’s there. And it wears on him. But in these digital spaces, he’s free. Confident. In control.

Sitting beside him, I kept glancing up from my screen. I saw how invested he was in keeping me alive, on task, and included. He was unusually chatty, explaining our next steps. His voice was proud. His posture relaxed. He was happy.

And I was, too.

We’ve been in a bit of a rut lately—living in separate spaces, our lives occasionally overlapping. I’ve caught myself worrying that the distance is permanent. That the doors he closes might stay that way. It’s easy to panic when that happens. To think it’ll take something big to bring us back together.

And maybe that fear comes from knowing what distance can become.

Because that’s what happened to me. I hid in my room, hands on a keyboard, eyes on a screen, building worlds in code. I created that distance—between me and my parents, who didn’t understand me, and my sister, who didn’t want to be around me. In my room, and in that world, it was easier. I was safe. And no one did anything to change it. So the distance became permanent.

But today reminded me: sometimes it only takes a moment. A small step into his world. A little curiosity. A shared screen. A diamond hunt.

Not to fix everything, but to find each other again.