Tag: memory

Fine.

On days when I work from home, I like to pick my son up from school. I sit in the line of cars slowly making their way to the exit and wait for the teacher to send him out.

As he walks toward the car, he looks exhausted most days. School asks more of him each year—more performance, more endurance, more emotional regulation, and more social navigation.

He throws his backpack into the back of the car and plops down in the front passenger seat.

“Hi, pal. How was school?” I ask.

“Fine.”

That’s it.

Fine. One word. One syllable. Full stop.

“Well, what did you do in…” and I’ll rotate through his subjects.

Sometimes I get a short answer, but most of the time he says he doesn’t remember.

As a parent, it’s frustrating. I can see that he’s tired, but I don’t want him to think that—by not asking how his day went—I don’t care. I genuinely want to know how his day was, what he did, and what he learned. I’m curious about his experiences and want to understand more about what he does and how he sees the world.

Additionally, my son struggles with his memory, so I feel pressure to ask the question right away—for a chance to hear any details before they fade. If I don’t get an answer, it feels like I’ve lost the opportunity to connect with him. It becomes an unmet need when his answer feels like it shuts the door.

But that’s my need.

His need, after working so hard all day just to get through it, is not to engage in that moment.

I recently read an article about how school is harder for kids today, and something clicked.

It may seem simple, but a genuine answer to the “how was school today” question requires considerable effort and decision making to synthesize information from a busy day.

When my son gets in the car, he’s not just carrying books in his backpack. He’s carrying the weight of every demand he had to meet. He’s carrying the exhaustion from seizure-disrupted sleep. He’s carrying the side effects of his medication. He’s used up every bit of energy just to make it through the day.

“Fine” isn’t a brush-off. It’s an exhausted plea for peace.

The article offered a simple but powerful suggestion:

Consider the purpose. Ask yourself whether you want to gather information or simply connect with your child.

As much as it feels urgent to gather information about his day—as a way to connect—it often does the opposite. It leaves me frustrated and leaves him more drained, trying to process my question, reach into his memory, and find the right words. Instead of connecting, in those moments, we drift farther apart.

My goal, always, is to connect with him.

I want him to know I’m happy to see him. I want him to know that I feel lucky to be able to pick him up. I want him to know that I see him. I want him to know that I appreciate how hard he worked to make it through the day and that I hope he’s proud of himself, because I am.

Instead of starting with a question that requires him to do more work, maybe I will start with a statement. Maybe one of those.

Or maybe I’ll just tell him how lucky I am to be his dad.

The Fog

“Do you understand?”

“Not really.”

We’ve had countless conversations with my son that all end the same way. We’ve tried repeating ourselves. We’ve tried to use smaller words. We’ve tried to use fewer words. But too many times, that process inside his brain that converts what he hears into something he understands breaks down.

It could be related to his seizures. It also probably has something to do with the handfuls of pills he swallows every day. But he lives his life surrounded by a thick fog and he struggles to find his bearings.

In conversations when we’re trying to explain something new to him, I can see a faint recognition. It’s like seeing a shape through a really thick fog. He knows there is something there, but he doesn’t know what it is.

When we talk about a memory, even a big event, he has the look of seeing the edge of something familiar that he knows he should recognize but he can’t really place what or where the object is.

In those moments when he can recall something, it’s like he is looking at something only a few feet in front of him. But then it backs away into the thick, white cloud and is lost again.

It makes me think of trying to navigate a new city that is covered by fog. You might know the general direction to start in, but haven’t yet memorized the entire route. The tops of the buildings are obscured by the fog, so you navigate by finding landmarks at ground level. Most of the references are unknown. Occasionally you’ll find one that looks slightly familiar but is unhelpful because you don’t have the context of where it sits in relation to anything else. When you find something you recognize, you get the brief satisfaction of knowing where you are. You might turn in a certain direction. But as soon as you step away from it to continue your journey, you’re lost once again.

We do our best to help him. We’re pointing out the landmarks, hoping that he’ll recognize more of them so that he can more easily know where he is. We’re getting him help so that he can develop the skills that he needs to find his way. And we’re calling out to him when he is too far away to see us so that he knows that we’re still there. But there is nothing we can do to lift the fog itself.

A Childhood In The Clouds

I wonder how my son is going to remember his childhood. Sometimes, I wonder if he is going to remember it.

My son and I watched a Philadelphia Eagles game and we saw a player that my son had met at the hospital. I asked if he remembered meeting him and he said that he didn’t. We met the player almost two years, so at first, I chalked it up to my son being too young to remember. But he was also in the hospital because he was having more seizures and because we needed to adjust his medication.

Like other medicines, epilepsy medications have a long list of side effects. But medicine that controls seizures targets the source of those seizures, the brain. As a result, the side effects show up in those areas that the brain controls, which is everywhere. We have sees these side effects alter his mood and behavior and impact his motor control. As he gets older, we’re also seeing how much they affect his ability to learn and his memory. Those side effects were likely there all along, hidden beneath the surface. But now that those skills are being tested, the latent effects are being revealed.

We’ve passed the three year mark of my son taking medicine for his seizures. Three years of my son’s brain in a constant fog. Three years of struggling to form solid shapes around thoughts and ideas. Three years of a childhood spent in the clouds.

Three years of exerting all his energy to focus on one task at a time. Three years of that focus sapping all his energy. Three years of wondering if there is enough energy or will left inside of him to enjoy an experience.

The more we explore, the more gaps we find. Milestone events never happened. People erased from existence. It’s impossible to tell whether the failure is storing the memory or recalling it. The result is the same, though. A void where a childhood should be.

My wife and I repeat stories of our adventures to him, and we show him the albums of pictures we’ve taken. I’m hoping by continuing to expose him to those memories that he will have something to remember. I don’t know if it will be because we’re unlocking old memories or creating new ones through our stories. I’m hoping his brain doesn’t know the difference. I’m hoping that when he looks back on this time in his life, he’ll have something to find.