Category: epilepsy

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.

Escaping From Reality

This post is part of the Epilepsy Blog Relay™ which will run from November 1 through November 30. Follow along and add comments to posts that inspire you!

When I was young, I was always looking to escape. I could read a book and see the scenery described on the page around me. I would read Spider-Man comic books and imagine myself, the awkward outcast, swinging from web to web through my neighborhood. And I would get so immersed in a video game that I wouldn’t notice that I was hungry or tired or that the sun was starting to come up and that I had to get ready for school.

My ability for my imagination to transform the world around me helped me escape from the inescapable situation that was my complicated childhood.

My son has that same gift. When we play hockey in his room, I think he sees a sheet of ice, feels the cold air around him and hears the support from his teammates on the bench and the fans in the stands. When we play Avengers, I think he sees our apartment as the city in smoldering ruins and himself as Captain America defending the citizens against whichever villain he has me portraying.

I’m grateful he has that. My son’s childhood is differently complicated than mine was. Where mine was lacking, my wife and I try to provide for my son in abundance. But the challenges that he is facing because of his epilepsy and the myriad of complications that come with his diagnosis is not something we can remedy.

In his imagination, those complications don’t exist. A seizure doesn’t prevent the game-winning goal or take down The First Avenger. The side effects of medication don’t slow down the action or the hero’s mind. Those are things for the real world. Those are things to escape from.

As someone who needed a place to go myself, I’m empathetic and want to encourage the behavior. As he gets older, he can evolve his ability to craft a world to wrap himself in to shape the real world around him. That world is likely to be sometimes hard, sometimes cruel, and sometimes dark. But imagination and creativity have a way of shining a light into the darkness and illuminating the way.

However he chooses to use his gift as he grows up and whatever form it takes, I hope he dares to shine that light on the world. Because I’ve watched it grow inside of him and have seen how it already impacts those around him. And it’s glorious.

NEXT UP: Be sure to check out the next post tomorrow by Glynn Partington at Living Well With Epilepsy for more on epilepsy awareness. For the full schedule of bloggers visit livingwellwithepilepsy.com.

And don’t miss your chance to connect with bloggers on the #LivingWellChat on December 6 at Noon ET.

To My Son On His 9th Birthday

Dearest son,

When I had the idea to write you this letter, I was worried that I was going to fill it with talk of epilepsy and how hard things are for you instead of words that celebrate how far you’ve come in your journey. Because even though it defines so much of our day-to-day, you are so much more than epilepsy. I want to celebrate how brave you are and how having you has changed me into a better man and a better father.

The world looked very different for me when I was your age. Grandpa wasn’t around yet, so it was just me, Grandma, and your aunt who passed away a few years ago. Things were hard and I learned to do things for myself but I felt very much alone. I carried that with me through my entire life until we had you. The idea of you having to go through life alone filled me with an unbearable sadness that caused me to finally see that there was a different way.

Knowing that you look to me for behaviors to model has made me focus on and work on demonstrating the behaviors that I most wish for you and, in turn, I’m exhibiting those behaviors for myself. Demonstrating things like self-love and being confident and communicating what is inside has allowed me to have a more

And you continue to show me the way. I used to think that I had to model every behavior I wanted to instill in you but, many times, it’s the other way around. I’m so proud of how hard you work and how much joy you bring to the people around you and I want to do the same. I love how, in spite of everything, you remain funny and curious, and so alive. It puts my own struggles into perspective and helps me be present and enjoy my life even when times are tough. And you have a way of making me and the people around you know they are special to you, which is something I have rarely done but am inspired to change.

The biggest lesson you taught me is to stop letting my own baggage twist the amazing, creative, loving person you are becoming. The beauty of it all is that you didn’t have to do anything other than be yourself. The worst mistake I could ever make would be to help you build the same walls that I did. Instead, you are helping me take mine down. I don’t know how to receive that gift, but I’m trying.

Nine years ago, you changed my life forever and you continue to do so every day.

I hope your next trip around the sun brings peace and joy and more amazing experiences. But whatever lies ahead, I am luckily, gratefully here with you. Really here, thanks to you.

Happy birthday, buddy.

Love,

Dad.