Category: lifestyle

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

Milestones

The Latin is “milia passuum,” meaning a thousand paces. The Romans also erected stone markers at mile intervals to notify the passerby of distances covered or the number of miles to go to reach their destination.

The Lower Merion Historical Society

We sat in our chairs among other parents, siblings, grandparents, and friends. The gymnasium was filled with nervous energy as we waited for the ceremony to begin.

It was a day that we weren’t sure would ever happen. For 10 years, my son struggled with unrelenting seizures, medication side effects, and behavioral issues. After he was stabilized, although never seizure-free, he faced social and intellectual challenges in learning environments tailored for students who were not like him. At the same time, my wife and I fought school districts that seemed motivated to make him disappear. That was until we found his current school.

For the past 3 years, he was in a place where he belonged. He was in a place that saw him for who he was and celebrated it. He was surrounded by peers on similar journeys and was able to bond, make friendships, and learn. When we received the results of his recent neuropsychology test, it showed progress. He was below his grade level, but there was progress. After his testing a few years ago, the doctors predicted only regression. We started looking at functional schools, assuming the academics would be too challenging. That was until we found his current school.

As I took it in, Pomp and Circumstance began playing, and the room collectively turned to face the door. Our son, dressed in his blue suit and tie that matched the school colors, led the procession of 8th-grade graduates to the stage.

I looked at the faces of the families around me in the gym. I listened as they spoke about their experiences with the school and how proud they were of their children for reaching this milestone. My heart swelled as I watched the video the school made, combining pictures and videos of the students being interviewed about what they learned and what they would take away from their experience at the school.

When it was time to hand out diplomas, I walked to the back of the room and hid behind my camera. I’ve gotten to know many of the graduates and their families, and I knew it would be emotional for everyone.

There is a tradition at the school where the teachers put together an acrostic poem using each student’s name. As each student stood on the stage, teachers took parts to read. Every line of every poem showed how well they knew each student with a great mix of pride, humor, and recognition.

My son was the last to the stage. He stood tall as he climbed the steps, but I could tell he was nervous. The anticipation of this day and this moment had been building for weeks. As he stood to the side, the teachers read his poem, which, appropriately, included a Marvel reference. He looked so happy when he received his graduation certificate, and he and his teachers exchanged big, warm hugs.

And then it was done. Students, faculty, and families came together and filled the gym with love, and pride, and gratitude. I found my son in the crowd and he fell into my arms as I gave him a long hug. My wife came over and we all embraced and shared the moment as a family.

There are milestones and there are MILESTONES, and this was definitely the latter. It is a moment set in stone to let us know how far we have come along our journey, even if we don’t know how far we have to go.

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.