birthday Archives - Epilepsy Dad

Another Year I Didn’t Think I’d Get

Every year, my son has a birthday that I didn’t think I’d get.

Since the age of five, he’s never gone more than a day or two without a seizure. There were times when he wouldn’t go an hour without one. And there were times when he was in status, and he wouldn’t stop seizing at all.

The first few years were especially scary. We would spend weeks admitted to the neurology floor of the children’s hospital, watching as the medical teams fought to keep my son alive. I would wake up next to him in the middle of the night to find doctors conferring, trying to find the next medication or treatment to try. His therapists would come during the day to help his body relearn what it had forgotten how to do. Each birthday we celebrated during that time was a gift, even if the time between them was unbearably hard.

Even after he was stable, his future was uncertain. The medications that reduced his seizures didn’t control them completely. That’s when his doctor introduced us to SUDEP (Sudden Unexplained Death in Epilepsy), and the leading risk factor is the presence of uncontrolled, generalized tonic-clonic (GTC) seizures, especially if they occur at night.

If I didn’t sleep before, I certainly wasn’t sleeping after that conversation. We installed a camera in his room to monitor him while he slept. I woke with every sound, every movement—or when there was too much time with neither.

Even this morning, as I was writing this post, I heard my son have a seizure in his room. It was longer than usual, so I used the VNS magnet and then his rescue medication before the seizure stopped.

As he turns sixteen, that’s more than eleven years without sleep. Eleven years of worry. Eleven years of hoping for another year.

And for eleven years, I have been given another year. Each one feels like a small miracle.

The fear never really goes away, but neither does the gratitude. I still hold my breath with every seizure, but I also get to watch my son grow taller, tell jokes, and dream about what comes next.

Sixteen years. Eleven years of worry. But also eleven years of laughter, stubbornness, love, and life.

Every year is another year I didn’t think I’d get.

And for that, I am endlessly thankful.

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.

To Be A Kid

We’ve seen many ups and downs over the last few weeks. An increase of dosage for one of my son’s new medications brought back unwelcome side effects. His seizures are only slightly more under control than they were before, but he’s exhausted and has a hard time sleeping through the night. His mood and behavior have been bouncing around from stable and happy to angry and defiant.

When it’s at it’s worst, little incidents explode into big ones. The escalation is so fast that it’s jarring and catches us off-guard. It’s so fast and the situation is so frustrating that we don’t always respond in the best way. Then we find ourselves in the middle of the tornado. He’ll say mean things. He tells us he wants us to throw everything away and that he deserves it. I can sense the shame and guilt swell inside and overwhelm him. We hold him and tell him that we love him and wait for the storm to pass. When it does, there are usually tears and remorse and regret. As a father, these moments rip me apart.

These side effects are cruel, especially for someone his age. Between the side effects, the diet, the appointments, and the seizures, he has little time to be a kid. There aren’t many chances for him to be free, to make a mess, and to not have the complications of his life burden him. There aren’t many chances for us to let our guard down, either. We’re always on the edge worrying about him, trying to keep him safe and regulate these side effects. We’re as confined as he is.

But, sometimes, we find opportunities where we can all have fun and enjoy the moment. My son loves dressing up as Captain America, so my wife planned a Super Hero Scavenger Hunt for his birthday. He and his friends had to chase down the evil villain the Snake Robber, the role that I was taking on. The idea of running through the streets with a mask and stuffed snake around my neck made me anxious. I’m a shy, quiet, reserved individual that follows rules and avoids chaos. But I went into it with an open mind and the singular thought that it would make my son (and wife) happy.

I made my way to the location where the superhero party would encounter me for the first time. I waited nervously on a bench in the park while curious onlookers moved further away. Across the park, I saw one of the kids spot me and point in my direction. Then, they charged. Within a minute, they had covered me with Silly String and laughter. My son had a huge smile on his face as he and his friends chased me around the park. Then I used my freeze ray to, well, freeze them and escape to the next location.

I had a huge smile of my own on my face as I ran to set up the next battle. This time, the kids trapped me until I told them that I hid a dozen of their teddy bear friends in the park. While they looked for them, I escaped again. Eventually, they caught up with me and saw me entering my lair to assemble a machine to steal their powers.

In the final battle, the superheroes found me near the pool assembling my machine. I froze all the heroes again except for Captain America who used his shield to deflect the ray. He advanced on me while his friends watched and defeated me by pushing me into the pool.

As I laid in the pool, I looked up to see my son with the biggest smile on his face and his arms raised in victory. Behind us, I could hear his friends screaming and cheering him for him. Captain America had saved the day. At that moment, there were no side effects. No appointments. No seizures. There was just my son being happy. And being a kid.