Life with Epilepsy - Our New Normal

Did you know that 65 million people around the world have epilepsy?

Did you know that 1 in 26 people in the United States will develop epilepsy at some point in their lifetime?

Did you know that for 6 out of 10 people with epilepsy, the cause is unknown?

If you had asked me a year ago, I certainly wouldn’t have known. I wouldn’t have given much thought to this disorder. I wouldn’t have noticed that there seem to be bright flashing lights everywhere we go. I wouldn’t have thought twice about letting my child swim in the water, while I watched from the sidelines. And I wouldn’t have known how to help someone having a seizure.

But that all changed for us in 2021.

In May, our then 5-year-old son Fynnlan had his first tonic-clonic seizure. It came out of nowhere. We do not have a family history of it; there were no signs or warnings. I look back on that first day, and I feel grateful that Fynn happened to be sitting on the couch snuggled in between Ron and I. Grateful that we had just put the little guys to bed early so they were away from the trauma that was about to unfold. But then I also remember the fear and anguish from that day. I remember feeling Fynnlan stiffen in my arms, and as the words slipped out of my mouth, “Fynnlan, are you okay,” his lips turned blue and I thought I was watching my son die before my eyes. The next few minutes were a blur, as Ron held our son in his arms, while I called 911 and ran downstairs to grab our retired nurse neighbor, all while Aly watched from the corner, sobbing, with no understanding of what was going on, thinking she was about to lose another brother.
The paramedics arrived as the seizure was subsiding and our neighbor was performing CPR on Fynn. As Fynnlan stabilized, the paramedics attempted to reassure me that my son was okay. But Fynn couldn’t talk. He had lost all ability to communicate and move his muscles appropriately. As I carried his stiff body to the ambulance, he slurred out a “mommy,” that nearly broke me. The seizure had finished, but where had my son gone? This wasn’t him, and I wanted my son back. Would he ever be the same? In that moment, I didn’t know. 3 hours later, a switch flipped, and Fynn “woke up” and started chatting the ear off of the doctor. I sent a joyous text to Ron, our son was back.

We have since come to learn that the order of events that happened to Fynn were very “normal” for a child who has a seizure. The hours post-seizure where he seemed to be disabled is something called a postictal state. I had no idea. And it pains me to know that 65 million people and their loved ones experience this nightmare.

After lots of testing, nothing was found, and with no family history, the doctors said that it was unlikely he’d have another seizure. Apparently, children often have one seizure and never have another. While this was great news, it was still an experience we could not shake. We started some family counseling along with Aly, as this was incredibly difficult for her. It quickly became clear that we were all experiencing some extreme PTSD from having already lost a child. We spent the next five months being more cautious with him, rarely letting him out of our sight. With each month that passed, we felt a little more confident that it truly was just a one time occurrence.

Then on October 19th, it happened again. This time he was at the playground. We were still keeping a cautious eye on Fynn, and I had been watching him play, as best as I could with 4 kids to watch. I remember seeing him swinging on the swing, I took my eyes off him for probably two minutes, and when I looked back he was curled up on the ground a few feet away. I called out to him, but I already knew what was happening as I ran to his side. I held him in my lap as my friends called 911 and gathered up and shielded my other children. This time wasn’t as bad as the first. This time I knew exactly what was happening and what to expect. Fynn came around much quicker, but we still needed to take him to the hospital to have him checked out. In May, Fynn had asked that we keep it private that he had had a seizure. But in October, as half of his class watched him be taken away in an ambulance, there was no more keeping it to ourselves. But I think it actually gave Fynn some freedom to be able to share about it and talk about it more. Since then, he has now felt free to tell his friends about it, and he has learned to embrace it.

As I rode in the ambulance with him, I was in the throes of preeclampsia creeping into my pregnancy. I was praying over and over that my blood pressure would stay down because the last thing we needed was for me to need to go to the hospital too. Thankfully, my body managed to stay calm through it all, though I would barely make it 5 more days before ending up in the hospital to get Anders out early.

With the pregnancy difficulties at the forefront of our mind, a premature birth, and the NICU, Fynn’s seizure and subsequent testing took the backburner for a bit. We finally got his EEG scheduled the week of Thanksgiving. This time we had to keep him up until midnight, wake him up at 4 am and keep him awake until his 4 pm appointment. Phew. As we waited for the results of this test, we already knew there was no good outcome. Either everything came back normal, and we were back to square one waiting and wondering if/when and why another one might happen. Or it would come back abnormal.
A week later, on Roman’s birthday no less, we found out Fynnlan was officially being diagnosed with epilepsy. The test had come back abnormal, and unfortunately, we do not have answers as to what’s causing it.

That week, we sat Fynn down and explained to him more in-depth what was happening with his body, helped him practice saying the word ‘epilepsy.’ We told him he would have to stop swim lessons, wouldn’t be able to try out for the swim team next month as planned. He wouldn’t be able to use the surfboard he just got for his birthday. We had Aly practice rolling Fynn onto his side, teaching her how to save her brother’s life, should she ever need it. All conversations I wish I never had to have.

In the week in between his diagnosis and meeting with the doctor to start medication, Fynn had yet another seizure. They were getting closer together. The strange thing about that day is that Ron and I could sense it was going to happen. We never shared that with each other until after, and I know that it probably sounds crazy. But I remember watching him like a hawk at church that morning, panicking every time I saw him move in a strange way, I was hyper on edge. That afternoon, while I was napping, Ron let the kids watch a movie. He was watching him like a hawk too, even asking him if he was okay every 5 minutes. He had asked him just minutes before it happened. Aly’s screams woke me from my sleep as I sprinted down the hallway already knowing what was happening before the words even registered. Another tonic-clonic seizure. Sadly, we were getting used to them. We handled this one ourselves and kept Fynn at home.

A few days later, Fynn started taking his twice-daily medication. That first night, he cried as it is so “yucky” to drink. Ron and I wept alongside him. I wished so badly to be able to reassure him that it was only temporary, maybe a week of drinking this, or I wished that somehow I could take this epilepsy away from him and carry the burden myself. But we all know that this medication will be a part of our routine for at least the next two years.

Our lives have changed drastically in the past 9 months. I wish I could say we were handling it all well, but it has been so tough and felt really unfair at times. We are told that it is possible that he will outgrow this disorder. If he remains seizure-free for two years, we can wean him off of the medicine and go from there. I have poured over articles and information about children with epilepsy. In my head, I know that he should be okay. But then again, Roman should have been too. See, the thing is, we as humans have a natural tendency to shield ourselves from unthinkable hardships. I remember when I was in the hospital in labor with Roman, I could tell something was wrong by the way the nurses were acting, but what I couldn’t understand was why no one was whisking me away to the OR to get him out. See, worst case scenario for me was a C-section. I never could have dreamed that he could have somehow died. I had felt him hours before, I was in labor, that just wasn’t a possibility in my mind. And so now, all of the facts and reassurance from doctors cannot assure me that my son will be okay. Because now, we walk through life imagining the unimaginable. So yeah, we’re not doing great. We’re living in fear, hovering over Fynn every second of the day. Jumping at every strange movement, checking on him each hour I wake up during the night to feed Anders. We know this isn’t sustainable. We’re trying to figure out how to live with all of this, and we pray daily asking God to help us trust him with our son.

It’s taken me a bit to want to write about all of this. Writing has always been a way for me to help process things, but at the same time, it’s a lot to share vulnerable parts of one’s life. But I know that in the same way it helped me to reach out to other stillbirth mamas, it helps to talk to others going through this. I hope that by me sharing these raw difficulties of our life, that it can help someone else going through this too. Already, the one person I know who has a child with it has helped me navigate all of this uncertainty this year. If I can in turn walk through it with another, I’d be honored.

And lastly, if you have made it this far, would you please consider becoming Seizure First Aid Ready? My son is literally one of the millions dealing with this, and I imagine that you, like me a year ago, might not know what to do if someone around you has a seizure. This online course is only 30 minutes and is free.
Help bring awareness to this disorder that affects so many people around you. My goal is to see 20 people become seizure first aid ready. Let me know with a comment if you decide to do the course!