What Can’t Be Undone

The suggestion to implant a VNS was made by our neurologist years ago. But there were still options to try so we held off. Unfortunately, CBD was not our miracle and other medications didn’t help. The seizures kept coming and we ran out of things to try.

When our neurologist brought up the VNS again, I felt the overwhelming weight of the decision squeezing the air out of me. If it even has the potential to improve his quality of life, she asked, shouldn’t we try it? Of course, she was right, but that knowledge didn’t help me breathe.

Neither did having an amazing surgeon in one of the best children’s hospitals in the country. Neither did the love and support of friends who would try to reassure me about how safe surgery and anesthesia are. Neither did my wife who held everything together when I couldn’t.

It wasn’t the mechanics of the surgery that occupied my thoughts. It was the idea of cutting into my little boy. It was the permanence of it all. It was the thing that can’t be undone.

We can wean off a medication that doesn’t work. We can stop the ketogenic diet. If years from now his seizures miraculously go away, we could stop everything and pretend that all the hard things about his childhood didn’t happen. There would be no signs, no trace. I could live in denial about how traumatized I was by this experience.

But the surgery forced me to confront the fact that these things aren’t going away. That the magical, unburdened life I wanted for my son is not going to materialize. That I can’t fix this or make it go away. That this is real, and that the future for him will include challenges brought on by his condition. That I’ve somehow failed him.

From the time the decision was made to the time they wheeled him away hopped up on “giggle juice”, I pushed my feelings down. I was practical but emotionless. I showed up for the appointments and answered the questions as he was prepped for surgery, but I wasn’t really there. I couldn’t be. I had to push it all down just to appear strong enough to make it through.

Even after his surgery was over, I had a hard time being present and acknowledging what had happened. I had a hard time looking at his scars. They were bigger than I thought they would be. Instead of small ones hidden by clothes, they’re long and visible. I looked away. I caught a glimpse of the device itself, raised under the skin and I looked away. It’s more than just being squeamish, it’s a spotlight of reality shining into my eyes and blinding me.

I worry that he’ll think I can’t look at him. I worry that he’ll feel like he did something wrong or that there is something wrong with him that is causing this reaction from me. I’m worried that I can’t get over my own hang-ups and be there for him when he needs me.

I tried to explain to him the feelings I was having but he didn’t understand. I didn’t, either, until I started to unpack them. But I still don’t know what to do with them. I want my acceptance to turn the spotlight that was blinding me into a beacon that brings me to him. But instead, it feels like the light has turned off. It’s not repelling me but it’s also not drawing me in. Instead, I’m left in the darkness trying to find my way.

But I can hear his voice. And I hear my wife’s voice. They’re calling me. And so I’m pushing through the blackness, the emptiness, to find my way back to them. It’s scary and impossibly hard. But I can hear them and they need me. I can hear them, and I don’t feel alone.

I’m on my way.

Questions Without Answers

Like many fathers, when my son was born, I had a list of things that I wanted to teach him. I wanted to be the sage, the guru that imparted to him wisdom drawn from my life experiences. I looked forward to the opportunity of leaving him feeling like his old man was a fountain of knowledge for all things. I longed for the bond that the transfer of knowledge would create between us.

How do I tie my shoes?

How do I throw a ball?

How do I tell a joke?

How do I ride a bike?

How do I catch a fish?

How do I program a computer?

How do I ask a girl out on a date?

How do I drive a car?

But after he was diagnosed with epilepsy, I began to fear the questions that I knew he would eventually ask. I went from wanting to be the person he went to for answers to the person afraid to disappoint him when he asked questions for which I didn’t have an answer.

Why is this happening?

Will it ever go away?

How do I live with epilepsy?

These questions may be the biggest questions that he will ever ask because they are the biggest questions that I have ever asked. I’m also on a┬ásearch for answers, but I don’t think I’ll have them before he poses the questions to me because not every question has an answer. We may never know why this is happening to him, but it is clear that this is our path. We may never know if it will go away, but we know that is here now. And we may not know how to live with epilepsy down the road, but we are doing the best we can today.

Rarely does life go according to plan, but we are facing a life that can’t be planned. How my son is each morning, depending on seizures and side effects, determines what we can expect from the day ahead. It’s impossible to predict anything in the future when you can’t predict the next day.

In the beginning, this uncertainty shut us down. I’m not sure it could have gone differently when my son was first diagnosed with epilepsy because we were fighting for his life. But even after he was stable, we were consumed with finding answers. After four years, it has become clear that there aren’t going to be any. But instead of letting that pull us back into hopelessness, we’re trying to allow it fill us with gratitude for what we do have. Because we have today, and for a time we didn’t think that we would even have that.

I went into fatherhood expecting to show my son the things he needed to know. But maybe the most important thing I can show him is how to live without having all the answers.

Happy Anniversary, Epilepsy

Four years ago this week, my son had his first seizure.

Four years.

Almost half his life.

He doesn’t remember the time before. Most days, neither do I. Our memories are of our new life that started the night his body contorted and stiffened on the floor of the arcade. It was the night that time stopped as we prayed that our son would come back to us and when I held his frozen body in a thunderstorm waiting for the ambulance to arrive.

Even though his second seizure wouldn’t be for nearly two months, the fear and uncertainty that the first one had caused lingered. It turned out that time was the quiet before the storm…that feeling you get when the clouds darken and the air changes and you know the storm is close. The air filled with the same electricity that would soon wreak havoc on my son’s developing brain.

And then it happened. The second seizure burst free just as my son sat in his seat onboard an airplane. Another thirty minutes and the plane would have been in the air but, thankfully, the crew got him safely off the plane and on his way to the children’s hospital. Within a few months, his seizures would be out of control and we’d be back in the same hospital learning firsthand what status epilepticus was.

It would take nearly two years before my son was stable. But even then, we were still adjusting medication, dealing with side effects and behavioral issues, and occasionally using his rescue medication. He was stable, but not living the life we had planned. But by then we were beginning to realize that we needed a new plan.

Four years in, we’re still adjusting that plan. There hasn’t been a day that has not been affected by epilepsy. He’s had countless seizures. He’s been on and off medications and suffered endless side effects. He’s had a barrage of blood draws, EEGs, and other testing and had a myriad of therapies trying to restore what epilepsy had taken away. He’s been isolated from his peers and falling more behind in a world that doesn’t wait for people who can’t keep up, or are different, or need help.

After four years, I thought we’d be further along. I hoped he would outgrow his seizures or we’d at least have them under control. I thought we would have figured it all out. I thought we’d be able to get back to normal. But, instead, we had to change our definition of “normal” and learn how to live life with different expectations.

In these four years, I’ve learned a lot of other things, too. I think I am a better man, husband, and father than I was before this started. And we’ve had so many wonderful experiences and met some amazing people on our journey. But I can’t bring myself to be grateful. I can’t allow myself to acknowledge the things that are good because I don’t want to reward the monster that continues to attack my son. Our life is what it is in spite of epilepsy, not because of it.

Four years is a long time. But I know we have many years to go. We didn’t ask for this, and we don’t want it. But it looks like we’re going to be together for a while.

So, Happy Anniversary, Epilepsy.

I didn’t get you anything.

Because I hate you.