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.

My Apologies

Last spring, my son and I went to a baseball game with friends to celebrate their son’s birthday. We had a great time, mixing cheering for the home team with ballpark food and catching up. Our Phillies won in dramatic fashion in the bottom of the ninth inning, which the birthday boy thought was an amazing present from the team.

After the game, I texted to thank them for inviting us. As we chatted, our friend included an apology for his son’s relentlessness, which, during the game, I took as enthusiasm and excitement for the experience. Instinctively, I responded by telling him that he should never apologize for his son and assured him that we had fun and that it was a delight to be a part of his son’s special day.

I’ve been thinking about that interaction a lot since then.

We’re fortunate to have people in his life who know our son and appreciate him for who he is. These include the teachers at his school, for example, and the doctors, nurses, therapists, and other healthcare providers with whom we interact regularly. They see and accept him, and they don’t make him feel like he needs to apologize for being himself. It includes friends who have children with similar conditions and other friends who have taken the time to get to know him.

But how many times have I apologized for my son to the outside world, whether it’s his inability to know when to stop telling a joke, his impulsiveness, or his awkwardness? Where is the line between apologizing for an act and apologizing for a person? Is there even a line? What if you can’t separate the actions from the person or the condition?

I apologize when he doesn’t understand something other kids do, when he’s unaware of the world around him, or when he’s too tired to function. Even without the special circumstances, I feel like I’m the type of person who would apologize for him doing things or just being a kid because the expectations I often set are based on how I think he should be, what society expects him to be, or, also unfairly, what an adult is expected to do.

Whether it’s because he sees me do it or not, I have noticed that my son apologizes a lot, too. In some cases, it’s justified to apologize for an action that impacts a person around him. Other times, he’s apologizing for something he can’t control or a symptom of his condition, like his struggle with his memory or his attention. Those are the times when the apologies can bleed into his identity and how he feels about himself, which is what I am desperately trying to avoid.

Because we never want him to feel like he needs to apologize for who he is.

Ever.