Tag: parenting

10 Years

We’re coming up on the 10th anniversary of our son’s first seizure.

When he was nine years old, we marked the milestone of half of his life being with seizures and half of his life being without seizures. Now, he has lived more than 2/3 of his life so far with seizures. We barely remember a time before.

When his seizures first started, there were times when we didn’t think we would see another day, never mind another year. The first few years were filled with countless emergency room visits, long hospital stays, extensive therapies, medications, related side effects, special diets, and surgery. Our son was broken down into his basic parts but stayed intact through the love and support of the people around us.

The next few years were about staying afloat, with a pandemic mixed in because things weren’t hard enough. The seizures never went away. We struggled to find him a school, a community, and friends as he drifted further from his peers in academics and social interactions.

These past few years, we have gone from staying afloat to building. We moved to the suburbs where we have more space. We found him a school that has accepted him and helped him learn and grow academically and socially. He graduated 8th grade. He has friends. While we don’t know what it will look like, he has a future. For so many years, that was just another “f-word.”

10 years. 10 years of little sleep, lots of worry and struggle, but also lots of love. 10 years of personal growth to become a better father and husband. 10 years to feel like we might see 10 more years after we weren’t even sure we would get even 1.

Regardless of what the past 10 years have looked like, I am grateful for each and every one of them.

For the First Time in Forever

A few weeks ago, I was sitting on a beach with my wife.

That, in itself, was not exceptional. We love the ocean and have been on beaches literally around the world. What made it exceptional, though, was that our son was 1,500 miles away.

This was the first time my wife and I had gone on a vacation without him since our son was born.

He is 14.

We’ve spent a night away before. Our son would stay with my parents once they moved to Pennsylvania or with my mother-in-law when she was in town. But only for a night. For many reasons, we weren’t comfortable with him staying longer than that, and we had no one near us with whom we felt comfortable leaving him longer.

Over the past few years, however, we’ve reconnected with one of my cousins, who is one of the nicest, most amazing people I know and who has developed a wonderful relationship with my son. It makes sense because her mother is also an amazing person. My aunt is a former teacher who taught me cursive and who gave me a dictionary at Christmas when I was 10. That is still one of my favorite gifts I have ever received.

When we asked my cousin if she would watch our son, she said “yes” without hesitation. My wife and I could barely contain our excitement when we told our agent to book the trip. And while I expected that there would be anxiety leading up to our departure, it turned out to be minimal. Instead, we handled the logistics of medicine schedules and came up with options for things they could do together while we were gone, including a baseball game.

From leaving for the airport until we walked back in the door, my wife and I could enjoy our trip knowing that our son was in good hands. True to his burgeoning independence, we received minimal texts and FaceTime calls, but they were enough to know that he was safe and happy, giving us space to be alone together for the first time in forever.

Princess Anna was right.

For the first time in forever
There’ll be magic, there’ll be fun

“For the First Time in Forever“, Disney’s “Frozen”, 2013

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.