Tag: family

Here We Go Again

Here we go again
Same old stuff again
Marching down the avenue
Six more weeks and we’ll be through
I’ll be glad and so will you
U.S. Army Marching and Running Cadence

I was never much of a runner. I had the look of one. Tall and skinny, with long legs that should have made running easier. I was even a fast sprinter. But anything longer than the size of a football field, and my brain would scream at every one of my moving parts to stop.

Imagine how much fun I had when I joined the army, where nearly everything involved…you guessed it…running. We’d wake up early every morning, head downstairs, and fall into formation. Our drill sergeant and his team would stand in front, bark out a few orders, and then my fellow soldiers and I would turn and follow our leaders, matching the rhythm of our steps to theirs, for however many miles we’d run that day.

A few minutes into the run, one of the sergeants would begin calling out a cadence. Military cadences are rhythmic chants used during marches and runs to maintain a consistent pace, foster teamwork, and boost morale. They help synchronize movements, improve endurance, and build unit cohesion.

They were magic. They kept me focused on the rhythmic call and response rather than the fact that I hated running, that my lungs and legs hurt, and that I should stop. Because I couldn’t stop. I couldn’t let my squad down. I couldn’t let myself down. I had to push through.

One of the cadences, “Here We Go Again,” summed up basic training perfectly: the same grueling routine, day after day. Wake. Run. Eat. March. Train. Eat. March. Train. Eat. Chores. Bed. Every day, for 8 weeks, the same thing.

Anytime I find myself repeating a pattern, especially a challenging one, I think of those early morning runs. I think of that need to push through, to not let my squad and myself down.

Here we go again
Same old stuff again

We’re approaching one of those times. Toward the end of the school year, our son is always exhausted. He’ll have a harder time waking up in the morning and randomly fall asleep in the afternoon. Around the same time, baseball, one of the few non-school activities he still enjoys, starts demanding more energy and mental bandwidth. We also start figuring out what the following school year will look like, scheduling IEP meetings, and talking with his school and the district about our son’s challenges, needs, and potential. It’s mentally, physically, and emotionally draining on the entire family.

Six more weeks and we’ll be through.

Six more weeks until the school year ends. Six more weeks to push through. Six more weeks of having a routine, structure, and certainty. Six more weeks until the story that has been written ends, and there are only blank pages unless we can write down a new plan before then.

It’s exhausting. It’s like those basic training marathon runs, where somehow we’d run in a circle but only be running uphill, defying physics, logic, and any sense of fairness. It tests our endurance and commitment. Parts of my brain are screaming to just stop.

But we can’t stop. We can’t let our son down. We can’t let ourselves down. We have to keep going. We have to fill those pages with a plan for the next year, until we find ourselves again six weeks from the end of the school year with the same cadence echoing in my head.

Here we go again.

Same old stuff again.

Bit of Both

There’s this great line from the Marvel Guardians of the Galaxy movie where one of the characters asks his team what they should do next.

 Peter Quill: What should we do next? Something good? Something bad? A bit of both?

Gamora: We’ll follow your lead, Star-Lord.

Peter Quill: Bit of both.

At a recent appointment with our neurologist, we were giving her an update on our son’s quality of life. As I listed the highs and lows, that line from the movie popped into my head because it perfectly captures where we are on our journey with epilepsy.

For so long, it felt like we were chasing a single definition of “better.” Fewer seizures. Better focus. More sleep. But over time, I’ve learned that progress rarely shows up in a straight line. It comes in fragments stitched between setbacks.

Even with the medication changes, VNS, and DBS, our son still has seizures most days. But they’re mostly when he sleeps and hasn’t had a daytime seizure in a long time. The seizures affect his sleep and rest, and he’s tired a lot. But we’ve been able to manage his exhaustion and prevent it from escalating and increasing his seizures.

Because of his morning seizures, he often goes to school later, but he makes it through the day. He still struggles with his memory and executive functioning, but he is able to complete tasks and problem-solve. He’s behind socially, but he has a best friend. When we thought we should only expect regression in his cognitive abilities, we saw progress in math and other subjects.

When the neurologist did the “finger-to-nose” test to assess his upper body movement and coordination, she observed some tremors and dysmetria. But he also plays baseball and can hit a fastball and throw a pitch. His reaction time is slow, but his coaches adapt their style to help him contribute. The team consists mainly of neurotypical teens who go to school together and socialize outside of baseball, but they treat my son kindly. This season, the coach even drafted his best friend onto the team.

Last week, I wrote about embracing the bittersweet. Moments are never just one thing, and I sometimes struggle to find the good in bad ones, but I look for the bad when the moment is good.

In the middle of sadness, there is love. In struggle, there is strength. In the hardest days, there is light.

Life isn’t one thing, either. It’s a collection of moments and experiences stitched together over time. It’s natural to apply the same pessimistic lens to the collection as to each individual moment and get stuck in the pattern of only seeing the negative. But in life, just as it is with each moment, it’s important to see both.

Maybe I won’t always find it right away. Maybe some days the sorrow will feel heavier than the joy. But if I can hold space for both, if I can remember that they live side by side, then maybe I can stay a little closer to hope.

Maybe I won’t always recognize it immediately. Some days, the bad will feel bigger than the good. But if I can step back, hold space for both, and remember that neither tells the whole story on its own, I can keep moving forward.

Holding space might mean celebrating a hit in baseball even if the rest of the day was hard, or letting my son’s laugh take up the room without immediately wondering how long it will last. It’s giving each part its due without rushing past the good or getting swallowed by the bad.

That’s not just something to look forward to — it’s something to hold onto.

So, what comes next? Something good? Something bad?

Bit of both.

Uncertainty, Fear, and Hope

“It’s not the unknown itself that paralyzes us—it’s our fear of what it might hold.” – Unknown

In life, there is always uncertainty.

Will my car start? Will there be traffic? Will I make it in time?

Is this milk bad? What will happen if I drink it anyway?

Most of the time, we aren’t aware of how much uncertainty there is. We focus on the present moment and the task at hand. Our awareness and perception are constrained to what is in front of us.

That’s a good thing. It would be terrifying if we were constantly aware of just how much uncertainty there is. We’d be paralyzed by fear—fear of the unknown, of what the future might hold, and of how little control we truly have.

“When everything is uncertain, we crave control. But clinging to certainty can keep us from growing.” – Unknown

Sometimes, though, uncertainty is impossible to ignore. Sometimes, it compounds until it becomes big enough to have a gravity of its own. And sometimes, it collapses on itself like a black hole that consumes every other thought.

Uncertainty about my son’s future. Uncertainty about my career. Uncertainty about the health of a loved one. Financial uncertainty. Relationship uncertainty. Each can be daunting by itself and occupy my thoughts. But, together, there can be nothing else. No other thought can escape.

When uncertainty dominates our thoughts, it can be overwhelming. In these moments, it’s easy to focus on the negative, like the discomfort of not knowing and the worst-case scenarios that could unfold.

I’ve always tended to wait for the other shoe to drop, focusing on the rare moments when it does rather than the many times it doesn’t. This pattern is known as negativity bias—the tendency to give more weight to negative experiences than to positive or neutral ones. Even when good outcomes are more common, the few bad ones loom larger in my mind, especially during times of uncertainty, when the unknown consumes my thoughts.

It’s hard to remember that uncertainty isn’t always a bad thing because it’s difficult to imagine positive outcomes when all you see is the unknown.

Uncertainty is the refuge of hope.— Henri Frederic Amiel

I like this quote because it shifts perspective. While uncertainty can be unsettling, it also allows space for hope. The unknown holds the potential for something better, new opportunities, healing, and change.

I try to remind myself of this when fear takes hold. When everything feels uncertain, there is still room for hope. And sometimes, hope is enough to keep moving forward.