{"id":42317,"date":"2025-05-20T14:54:21","date_gmt":"2025-05-20T13:54:21","guid":{"rendered":"https:\/\/nightwatchepilepsy.com\/between-freedom-and-safety\/"},"modified":"2025-05-20T20:46:42","modified_gmt":"2025-05-20T19:46:42","slug":"between-freedom-and-safety","status":"publish","type":"post","link":"https:\/\/nightwatchepilepsy.com\/it\/between-freedom-and-safety\/","title":{"rendered":"Between freedom and safety – Epilepsy in the life of a teenager (and her mother)"},"content":{"rendered":"

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How do you let a teenager grow up with freedom when there\u2019s always a chance of an epileptic seizure? In this blog, a mother and her 14-year-old daughter share their story. About letting go, setting boundaries, school trips, and the ongoing search for balance. An honest, relatable, and hopeful double portrait.<\/b><\/p>\n

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From the mother \u2013 Letting Go Without Forgetting<\/span><\/h2>\n

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Our daughter is 14. She\u2019s in her third year of high school and wants the same things as any other child her age: freedom, independence, and her own life. But she has epilepsy, which makes the journey toward independence a little more complex.<\/span><\/p>\n

We live near the beach. She loves it \u2014 going there with her friends, listening to music, taking selfies. But swimming? That\u2019s not allowed. Not as long as her epilepsy remains unpredictable. The risk is too big. She understands, but it\u2019s still difficult.<\/span><\/p>\n

She also loves horse riding. Since she was young, she\u2019s been riding ponies every week. But, with heavy hearts, we\u2019ve had to pause that for now. The risk of having a seizure while riding is too dangerous, and the consequences could be severe. These aren\u2019t easy conversations with a teenager who just wants to do what her friends are doing.<\/span><\/p>\n

Still, we try to give her as much freedom as possible within safe boundaries. Can she bike to school alone? Yes, with a fully charged phone, clear agreements, and a check-in when she leaves and arrives. Going to the city with friends? Yes, as long as we know who she\u2019s with and she stays reachable. Being home alone? Also, yes, as long as we coordinate things properly.<\/span><\/p>\n

Then there\u2019s the school trip. She was allowed to go, thankfully. But with one condition: I had to go as a chaperone. For her, that felt like a double-edged sword. In the third year of high school, you want to break free and handle things on your own. No mom hovering over your shoulder. It wasn\u2019t ideal for me either, but I understand the school\u2019s perspective. And, to be honest, I would feel uneasy if I weren\u2019t there.<\/span><\/p>\n

At night, she wears the NightWatch. It gives us as parents a bit more peace of mind, as the system alerts us to possible seizures during the night, not just for her safety, but for our own rest as well.<\/span><\/p>\n

The biggest challenge remains finding balance. Of course, we want to protect her, but we also want her to live her life. She\u2019s a teenager with dreams, plans, and boundaries she wants to explore on her own. And she deserves to feel free, even with the risks.<\/span><\/p>\n

It\u2019s a learning process. For her, but definitely for us too. Sometimes we give her too much space, sometimes we hold on a little too tightly. But we keep talking, adjusting, and finding what works because ultimately, we want the same thing: for her to be a kid. With epilepsy, yes, but not limited to epilepsy.<\/span><\/p>\n

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From her daughter \u2013 I Just Want to Join In<\/span><\/h2>\n

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I\u2019m just a fourteen-year-old girl. Sometimes I almost forget I have epilepsy. And sometimes it\u2019s all I can think about. It\u2019s strange because, on the outside, no one can tell. I feel like myself. And yet, there\u2019s always something around me that others don\u2019t have.<\/span><\/p>\n

I just want to do things that everyone my age does. Go to the beach with my friends, bike to school, and spend a day shopping in the city. And most of the time, I can \u2014 but there are always extra rules. Phone charged, let them know when I leave, who I\u2019m with, and what time I\u2019ll be back? I get it. My parents mean well. But sometimes, it\u2019s just annoying.<\/span><\/p>\n

Swimming, for example. We live so close to the sea, and everyone jumps in the water on hot days. But I have to stay on the beach. Sometimes, it feels like I\u2019m sitting on the sidelines of my own life. Like, I have to watch while everyone else is just going on. And horse riding\u2026 that was really my thing. I could forget everything for a while. But now I have to wait until it\u2019s safe again. That\u2019s hard, even though I know it\u2019s not forever.<\/span><\/p>\n

And then there\u2019s the school trip\u2026 Yeah, I was allowed to go and was happy about that. But my mom had to go too. And honestly, that felt a bit weird. Most of my classmates don\u2019t see their parents for that week. I do. Always nearby, always alert. She did well though, really. Not too intrusive. But still, I just want to go on a trip without worries. Without extra explanations, like everyone else.<\/span><\/p>\n

At night, I wear the NightWatch, and that helps. It gives me a sense of safety. I know it helps my parents sleep better, and that\u2019s a relief too. Sometimes, I\u2019m afraid that people see me as different. Or feel sorry for me. But I really don\u2019t want that. I\u2019m not my epilepsy. I\u2019m just a teenager with dreams, a big mouth sometimes, and a bit of stubbornness.<\/span><\/p>\n

And yes, sometimes I have to make extra arrangements or miss out on things. But that doesn\u2019t mean I\u2019m less than anyone else.<\/span><\/p>\n

My parents really try their best to give me space where they can. And I understand that they\u2019re sometimes scared. I am too. But I want to learn to live with my epilepsy, not against it. And I believe that\u2019s going to work. Step by step. In my own way.<\/span><\/p>\n

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Learning Together, Growing Together<\/span><\/h2>\n

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Epilepsy doesn\u2019t make life impossible, but it does require adjustments for parents and children alike. In this story, both mother and daughter show that open communication, helpful tools like NightWatch, and trust in each other make room for more safety, freedom, and understanding.<\/span><\/p>\n

Because with love, patience, and a little courage, there\u2019s often more possible than you think.<\/span><\/p>\n

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