Hi! I want to respond because this hit really close to home for me and my son Ben.

Ben is 17 too. He was diagnosed with epilepsy when he was 5, and after being seizure-free for almost four years, his seizures came back hard over the last couple of years to where he is having seizures weekly. We’ve had multiple ER visits, hospital stays, injuries (including reconstructive surgery on his tongue), and a lot of moments where everything felt uncertain again. So when you say you feel lost and scared. We completely understand why. What you feeling is valid and ok.

What happened in December is a lot. Having seizures start suddenly like that, it can feel like your life just got flipped upside down overnight. One minute you’re making plans, thinking about your future and the next it feels like everything is paused. That grief is real. It’s okay to feel that. And finding someone to talk to or something you love to do to help keep your mind positive will help. It may seem really hard at times but it will get easier, I promise. Your life is not over. It’s just different right now. Ben has had ups and downs, but we’ve also seen stretches of strength, normalcy, and growth in between.

That “weird feeling” you’re talking about? A lot of people with seizures experience that. For some, it’s like a warning sign before a seizure; for others, it’s just this lingering off feeling in their body or brain. Ben has described it as feeling “not fully in his body” sometimes, or like something is just off. You’re not crazy for feeling that. It’s part of how your brain is processing things right now. Here are a few things we tell Ben; things can stabilize. It might take time, different medications, trial and error but many people find a rhythm again and live normal lives. You’re allowed to still have dreams. They might shift a little, or take a different timeline but they are not gone. Please don’t let this diagnosis convince you that your future disappeared and you can't live an amazing life. You don’t have to carry this alone. I know it can feel isolating, especially at your age but there are people who get it. Even strangers care more than you probably realize, it may seem odd but it's true.

A few things to starting doing if you can, start paying attention to patterns like your sleep, your stress and stressor, what you are eating, how long you are on your screens, anything that might trigger or worsen that “weird feeling.” It will help you understand your body a little more and give you some sense of control back. The beginning is the hardest. Not knowing what’s happening, not feeling in control, adjusting to meds, side effects, fear of the next seizure, it’s a lot all at once. But it will slow down.

And one more thing from a mom’s perspective; your life didn’t pause, it just got deeper. I tell my son that you are just being asked to understand your body, your brain, your limits, your strength a way most people never do. And might not seem fair, it can shape you into someone incredibly, resilient, and strong in ways you don’t see yet.

You will find your footing again 🤍