The Lost Year

This has been an extremely difficult year.

Not difficult in a single, dramatic way.

Difficult in the slow accumulation of loss.

The kind that doesn’t arrive all at once, but keeps showing up until you realize you’re standing in a year that no longer resembles the one you started in.

My father passed away this fall.

It was slow, and then it was fast. Months of watching a body fail, followed by an ending that still came as a shock. His world had grown smaller. His body no longer cooperated. His mind, at times, betrayed him. He was unhappy in ways that couldn’t be fixed.

His death brought grief. And guilt. And the familiar questions that arrive uninvited:

Should I have spent more time? Should I have been more patient? Should I have done something differently?

It also brought relief. And that’s harder to admit out loud. Relief that he wasn’t trapped in a body that no longer worked. Relief that the suffering had ended. Relief that the waiting was over.

I am grateful that we moved him closer. Grateful that my son got to know him. That he saw my son play baseball. That he showed interest in my son’s life, even as his own was narrowing. Those moments matter. They don’t cancel the loss, but they soften its edges.

Work added its own quiet weight this year.

For much of the year, I was in a role that wasn’t a good fit. The frustration built slowly, then all at once. Fear kept me there longer than I should have stayed. Responsibility did too. The job search dragged on, heavy with uncertainty. I eventually landed somewhere new, which brought some relief—but even that has continued to shift. The year ends without the sense of stability I hoped for.

My son still hasn’t seen the benefits we were hoping for from DBS. In fact, he’s having more seizures now than he was at the beginning of the year. When you’ve lived with uncertainty for this long, you’d think it would lose its power. It doesn’t. Each setback still lands hard.

My goddaughter’s health has changed as well, requiring more care, more attention, more presence. The needs don’t slow down just because you’re already stretched thin.

There have been other changes this year, too. Big ones. The kind that rearrange the shape of your life without asking permission. The kind that leave you trying to find your footing in a version of the future you didn’t expect to be standing in.

This year can’t end soon enough.

It feels like a year of subtraction. A year where things were taken faster than they could be replaced. A year where even gratitude felt heavy, like another thing I was supposed to hold carefully and do “right.”

And still, some things remain.

My son.

My goddaughter.

My dogs.

My health.

A few friends.

A job. Insurance. Shelter.

I don’t list these things to balance the scales. They don’t erase what was lost. They just exist alongside it.

I’ll carry them into the new year. I’ll keep showing up for the kids. I’ll keep working toward better outcomes where I can, and accepting limits where I can’t. I’ll keep looking for steadier ground.

This year feels like the floor.

Not the ceiling.

Next year isn’t about rebuilding what was lost. Some things can’t be rebuilt. Some things shouldn’t be.

Next year is about making something new.

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.