Tag: seizures

Thankful and Grateful

Today is Thanksgiving in the United States.

While we aren’t the only country that celebrates Thanksgiving, the holiday is widely celebrated in the United States as a time of gratitude and togetherness.

In our household, we have a nightly routine that has evolved over the years. It includes reflecting on something we are grateful for. Even if we are too tired to do the full routine, we never skip our “grateful for.”

That led me to wonder about Thanksgiving being a day about gratitude and the difference between being thankful and grateful. According to the vast library of truth that is the internet, gratitude encompasses both being thankful and being grateful, but even though the terms thankful and grateful are often used interchangeably, they have subtle differences in meaning and emotional nuance:

Thankful

Definition: Being aware of and expressing appreciation for something good that has happened or for a specific benefit received. Thankful is usually tied to a specific moment or event (short-term and outward-focused).
Focus: Often more situational and reactive; tied to specific actions, events, or gestures.
Example:
“I’m thankful for the gift you gave me.”
“She felt thankful for the sunny weather during her picnic.”

Grateful

Definition: A deeper sense of appreciation and acknowledgment, often tied to an enduring or broader sense of thankfulness. Grateful reflects a more profound, ongoing state of appreciation (long-term and inward-focused).
Focus: Goes beyond immediate circumstances and often reflects a heartfelt acknowledgment of a relationship, life situation, or intrinsic value.
Example:
“I’m grateful for having a supportive family.”
“He felt grateful for the lessons he learned from his challenges.”

With my newfound knowledge of the nuances of gratitude, I think about how it applies to the language I use in the context of my son’s epilepsy.

I am thankful that our son has access to medicine that helps reduce his seizures. I am thankful for the doctors and nurses who cared for him during his surgery. And I am thankful he has a friend who helped him catch up when our son returned to school.

I am grateful for the support of his friends and his school. I am grateful to live where he can access specialists and get the care he needs. I am grateful for the lessons I have learned from our son’s challenges.

I’m not sure it’s perfect, but in the end, regardless of the words we use, it’s the feeling that matters. Gratitude improves our overall well-being and strengthens relationships by fostering positive emotions, encouraging mutual appreciation, deepening connections, and helping us focus on the good in ourselves, others, and the world around us.

On a day intended to celebrate gratitude and togetherness, I think that’s what matters, whatever language we use.

Because this post mentions Thanksgiving, it’s also important to be mindful that its origins are tied to events that some Native Americans associate with colonization and the loss of land, culture, and lives. If you’d like to learn more, please read about the National Day of Morning, which is observed by many Native Americans on Thanksgiving and is a time to honor their ancestors and reflect on the historical and ongoing injustices faced by Indigenous peoples due to colonization.

Probabilities

I spend a lot of time thinking about probabilities. Usually, it’s for my day job in artificial intelligence, data science, and analytics. Predictions abound in that world as we figure out the likelihood that something will occur and make a decision based on that likelihood.

Guided and confined to a business context, the probabilities are mostly numbers I can understand and that are useful for the business to take action on. The other day, I was thinking about my son’s upcoming surgery, and my mind wandered through all of the events that had to happen to get us there.

The material was drawn from the earth to manufacture the instrument and the tools to perform the surgery.

The elements that made up that material had to be captured and combined to form a planet capable of creating life.

A boy on that planet had to grow up to be a neurosurgeon to do the surgery.

A girl on that planet had to grow up to be a neurologist who saved our son and recommended the surgery.

My wife and I had to be born, live more than thirty years of our lives, find each other, get married, and create a life.

Thousands of generations before us had to be born, meet, and multiply.

A gene had to be passed down through those generations, evolve, and mutate to cause the seizures in our son.

The cosmic material that formed the genes and the elements had to be forged in the heart of stars over billions of years and make their way to this part of the universe, on this planet, and in these people.

At any point, a variation could have changed the course of the billions of years of possibilities and choices that led to each successive moment. But all of those possible points of diversion led to this path, to this universe, to this planet, to these people, to my wife, to our son, and his condition.

Maybe there’s a version of our family without epilepsy in another universe. But there are also infinite versions of me without this family. With the unfathomable probabilities against existing in this moment and with this family, I am exactly where I am supposed to be.

Relax, It’s Just Brain Surgery

At a recent appointment, our neurologist suggested deep brain stimulation for our son.

Brain surgery.

A recommendation for another surgery was unexpected. We had just weaned off the Onfi and were down to only two seizure medications. The switch from keto to modified Atkins proved challenging to keep his ketones up, which is shifting us to a trajectory that will place him on a normal diet for the first time in almost 10 years. Still, with those changes, we haven’t seen an increase in seizures. Considering the toll puberty has taken on his body physically and emotionally, I was grateful to be where we were.

But we’ve been at this long enough to know it’s not just about seizure freedom. Our focus has always been on finding the balance between seizures and quality of life, since heavily medicating him never stopped the seizures but turned him into a zombie. At one point, he was on 4 medications, the ketogenic diet plus the VNS, and even then, seizures would break through. That he can go to school and learn, play baseball and video games, and have a life at all is more than we could have hoped all those years ago, watching seizures wrack his tiny body.

We also know that our choices aren’t just about the present. We also have to think about the future, and that future includes the potential dangers that come with uncontrolled seizures and epilepsy. Our son’s condition presents similar to Lennox-Gastaut Syndrome, and with that comes an increased risk of SUDEP.

Any options that lower his risk but still allow him to have a life are worth exploring, especially because our list of options continues to shrink. I hope for continued advancements in technology and medication; deep brain stimulation is a good example. It wasn’t an option for children with epilepsy until recently, but now it is being offered for our son.

Which brings us back to…brain surgery.

I’m not sure what I expected before we met with the neurosurgeon. Correction: I expected brain surgery to include opening up our son’s skull with power tools. When the surgeon explained what the surgery actually entailed, I felt a sense of relief. Other than the fact that, yes, things would be inserted into our son’s brain, it sounded similar to the VNS surgery. It also helped that the surgeon, the same surgeon who did our son’s VNS surgery, is the epitome of cool and has done the surgery enough that it sounds like he’s describing a routine task.

I’d imagine it would be the same as a pilot describing how to land an airplane. Sure, it makes sense, but there’s enough awareness and humility on my part to know that a) I can’t do it and b) you obviously know what you’re doing, so I can relax and let you land the plane.

I left the consultation feeling less overwhelmed and in favor of the procedure. We also talked to our son about it because he’s old enough to have an opinion about his body. He had a few basic questions but did not hesitate before agreeing to the surgery.

And, with that, the decision has been made.

Let’s land this plane, doc.