Category: epilepsy

Learning to Separate Grades and Self-Worth

I love my son’s school. I’m grateful every day for what they’ve done for him. He’s had many of the same teachers for years, and this is the first year the school expanded to 10th grade. My son is part of that first cohort, which made our first 10th-grade parent–teacher conference feel like a milestone.

When his homeroom teacher started talking, something tightened in my chest—because she wasn’t talking about grades at all. She was talking about him.

I don’t remember my mom going to conferences when I was growing up. What I do remember is bringing home my report card, as if I were handing over a verdict. Straight As weren’t celebrated—they were expected. Anything less felt like disappointment and shame, from both the people around me and myself. The focus was always on performance.

That pressure fed my perfectionism. At school, and then at work, it felt like I was constantly being graded—on every email, every meeting, every interaction. It wasn’t about getting better; it was about avoiding failure. Anything less than perfect wasn’t “something to improve next time.” It was proof that I wasn’t enough.

My son’s school feels like the opposite of that. They use grades to track progress, but grades aren’t the focus. He is.

And with the right support, he’s thriving. He’s doing math. Writing paragraphs. Learning skills we weren’t sure he’d ever be able to do until we found this place—this environment that encourages him, believes in him, and helps him believe in himself. He feels capable.

His new homeroom teacher told me how he encourages other students. How he volunteers to show them they can do it. How he asks thoughtful, timely questions on their community field trips. She said he feels like a leader.

Hearing that felt like healing something in me I didn’t even know was still hurting.

My son is proud when he gets good grades, but he’s just as proud when he gives his best effort, even if the grade isn’t perfect. He sees value in trying. I never learned that. I tied my worth to my performance. Anything less than perfect felt like failure. And letting myself be proud felt like giving up on perfection.

Watching him, I’m learning—slowly—to separate my performance from my identity. To recognize that being imperfect doesn’t make me a failure. That I can be a good, caring person even when I make mistakes. That disappointment doesn’t have to become a shame spiral reinforced by old messages from my childhood.

My son is learning what I didn’t learn until adulthood: that effort matters, growth matters, and who you are is more than any grade. And I’m learning it, too, because of him.

When Help Isn’t Helping

It’s great to have people in your life who want to help. I know how lucky I am to have friends and family who care, who check in, who ask what they can do. I am very fortunate.

But when you’re already overwhelmed, even the offer of help can add to the weight. Suddenly, instead of just managing my own list, I’m trying to come up with something for someone else to do so they feel helpful, because they genuinely want to be helpful. And that becomes one more responsibility, one more set of feelings to consider.

The other day, my mom offered to help. I told her I’d let her know if something came up. She gently pushed back and said I needed to find something for her to do—some way for her to contribute—because she needed to feel like she was helping.

And in that moment, my stress level doubled. What was meant as support felt like another to-do. Another thing to figure out. Another emotional dynamic to manage. The offer wasn’t helping; it was giving me more to carry.

I know some of this is me. I’ve never been good at asking for or accepting help. Maybe it’s because I don’t want to put anyone out. Maybe it’s because I feel like I should be able to handle it on my own. Maybe it’s because I don’t always feel worthy of the help being offered. Or maybe it’s that the help being offered doesn’t match the help I need in that moment, and then I feel guilty for not having a task ready.

There are so many obstacles in my way—my sense of responsibility, my discomfort, my self-doubt. I don’t want people to think I’m ungrateful. I don’t want them to think I don’t need them. I don’t want them to stop offering.

And sometimes, the truth is that what helps isn’t a task at all. Sometimes it’s just knowing someone is thinking of us. Sometimes it’s an invitation to grab a coffee or play tennis or step away from everything for an hour. Sometimes the help is simply the reminder that we’re not doing this alone.

But so often, help doesn’t feel like help. It feels complicated.

Maybe that’s because I don’t yet have a healthy relationship with accepting help. Maybe there’s something I need to learn about receiving care instead of only giving it.

Because the reality is: my son will likely always need support. I want him to grow up knowing he can ask for help without shame. I want him to feel worthy of help. I want him to see that needing support doesn’t mean he’s a burden.

I want to model that for him.

But I’m still figuring out how to do that while shielding him from the stress and overwhelm that comes with being the one who needs help. I’m still learning how to receive help without turning it into another source of pressure.

Maybe the lesson starts with accepting that I can’t do everything alone. And maybe the next step is allowing others—genuinely, openly, imperfectly—to help lighten the load in the ways they can.

Even if that means learning how to let help actually help.

Getting Used to It

I’ve been on this epilepsy journey with my son for more than ten years. Ten years of seizures, medications, side effects, appointments, therapies, surgeries, sleepless nights, and the fear and instability that come with having uncontrolled seizures.

After ten years of anything, most people assume you’d eventually get used to it. Like living next to a railroad track long enough that the passing trains become background noise, or becoming so accustomed to planes overhead that you stop noticing them entirely. They imagine that after a decade of this life, the shock would soften, the fear would fade, and that somehow repetition would dull the edges.

But it never does.

Each seizure still stops the room, stops my thoughts, and stops whatever sense of normalcy I’ve managed to build. You don’t get used to it. You just get better at pretending you’re not breaking inside while you find a way to keep going on the outside.

That ability so many of us develop — to keep going, to go to work, the grocery store, the pharmacy, to keep the house clean, to pay the bills — can create the illusion that we’ve somehow normalized it all simply because it’s familiar. It can make it look easy from the outside, as if what we live with has become background noise to an otherwise ordinary life.

But it’s not background noise. It’s deafening. It drowns out everything else, and it takes effort — real, constant effort — to strain past that noise and hear the rest of the world. It takes effort to juggle routine tasks with the medical needs that keep my son going. It takes effort to reorganize an entire day of obligations when he has more or longer seizures that require rescue medication.

The reality is that there is no getting used to it. And that truth reveals itself over and over again.

Not after ten years, not after a thousand seizures, not after all the appointments, therapies, and sleepless nights. I’ve been walking this epilepsy path with my son for more than a decade, and still, every seizure cuts through whatever calm I’ve managed to create.

Time doesn’t dull the impact; it just teaches you how to carry it.