My Son Had Staring Spells—I Made It My Mission To Find Out Why

When my son Jake was just 7 years old, my wife and I noticed that he began to zone out for a few seconds, and it seemed like he was ignoring us. We weren't sure what was happening, but it didn't feel right.

Leading up to his annual checkup, we expressed what was happening to a wonderful pediatrician. We told him about Jake's staring spells. While he wasn't entirely sure of the cause, he suspected they could be seizures, and he immediately referred us to a neurologist.

Naturally, we were shocked as we didn't know anyone who was dealing with the condition, and what Jake was experiencing was nothing like what you think about when you hear the word "seizure." This was completely unfamiliar territory for us and, honestly, it was quite overwhelming.

That initial visit with Jake's pediatrician ultimately started what I now call the "epilepsy rollercoaster." Since that day, we've experienced so many highs and lows, continually cycling through all the emotions of helping our son manage this condition. Over the last 19 years, Jake's been doing very well thanks to his amazing care team.

But when I think back to the beginning of this journey, I remember how scary it was because we didn't have anyone to turn to and few resources to help us along the way. When Jake would have a seizure at school we would rush him to the ER with tons of questions as to why and how this could happen.

At the time of Jake's diagnosis, my wife and I were surprised to learn that not a lot of people talk about epilepsy, that it was a stigmatized condition, and there was very little in the way of a community. I knew I needed to do something to change that, and we made it our mission to not only advocate for our son but also to find a way to raise awareness and understanding of epilepsy and seizures.

In 2011, I created a website and later a podcast of the same name featuring epilepsy and seizure experts who provided information about the condition and helped to take some of the mystery out of the condition. With every person I interviewed, both expert and caregiver, I learned something new about how to care for our son. I also learned how to talk to others about the possibility of him having an episode and what they should do.

More recently, I've been hosting a YouTube video series called The Care Giver. What many people don't realize is that caregiving can be an isolating experience. When you're in it, it's easy to think that you're alone and that no one else could possibly understand. I hope to provide strength and hope for other caregivers in knowing they're not alone, and that there are others who share similar experiences for both the inspiring and difficult moments. This is the amazing community I've been talking about!

Beyond connecting with these inspirational people, I'm also able to give them a much-needed "Day of Care." As caregivers, we often forget to take care of ourselves while we're helping our loved ones. Think of it like when you're on a plane and you're listening to the pre-flight instruction, which tells you to always put on your mask before helping anyone else.

This is a common theme I've seen among the caregiver community. We don't prioritize our own health as much as we should. This is recognized, and I take the caregivers for an activity for themselves that they normally don't take the time to do—whether it's painting, visiting a favorite coffee shop or even checking out vintage cars (also a passion of mine!).

I remember taking my wife away for a short vacation and being terrified that something might happen when we were away. Even though it was just a couple of days, we needed to trust the relatives we had to watch him, so we could have some time alone together, to recharge our batteries and take a breath.

Of course, Jake was fine while we were gone and we both learned to always make time for ourselves. You can't take care of the ones you love if you don't take care of yourself.

With National Epilepsy Awareness Month approaching in November, it's important for us to do everything in our power to drive the conversation about seizure disorders. And to learn from one another. Now is the time for people to truly understand what this condition is and how they can be an ally to those living with it.

I hope that by encouraging others to come together to raise awareness of this serious condition and to continue advocating for patients in need, we can better understand and address the challenges those with epilepsy, their family members, and caregivers face daily.

Greg Grunberg is the host of The Care Giver Series, in partnership with Jazz Pharmaceuticals. This series allows him to travel across the country and meet other incredible epilepsy caregivers and families, hear their stories, talk about their experiences, and help each other. He is also the founder of the website TalkAboutIt.org and podcast, Talk About It.

All views expressed in this article are the author's own.

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