My youngest daughter, who is 11 years old, suffers from a seizure disorder. Despite extensive testing, we still don’t have a definitive diagnosis. Her neurologist has mentioned that she might grow out of the seizures as she goes through adolescence. However, she’s nearing adolescence now, and the seizures persist, even with medication. She doesn’t like having seizures, understandably, and sometimes struggles with anxiety because of them. The seizures are unpredictable and infrequent, which makes them all the more unsettling.
As her father, it’s hard for me to imagine what she must go through, knowing a seizure could strike at any moment. While her medication helps, it does come with side effects. We try to ensure she has a fulfilling life—she plays softball and volleyball, took piano lessons, and recently started learning the guitar. As parents, we expect her to do well in school and strive to live life as a family as if everything is normal. But the concern about her condition is always in the back of our minds.
The other night, when I went to tuck her into bed, she was quietly crying.
I asked her what was wrong, and she responded, “Dad, I just want to be normal! I don’t want to have seizures!”
I said, “Sweetie, you are normal. Who you are isn’t defined by whether or not you have seizures.” We then talked about one of her classmates who has diabetes and about the fact that I have asthma. I explained, “We all take medication to manage our physical conditions, but those conditions don’t define who we are.”
This raises an important question for parents: How can we help our children and teens understand that having a diagnosis doesn’t mean they are flawed or broken? How do we teach them that they are not products of a human assembly line destined for the "Island of Misfit Toys"?
Let me share a personal example. As a small child, I was diagnosed with asthma. I remember nights spent propped up in bed, struggling to breathe and afraid to fall asleep. Back in the 1960s, there were no nebulizers or inhalers—just tiny pills prescribed by the doctor. My mom was instructed to cut the pills into quarters, and I’d take a fourth of one for relief.
As I got older, my symptoms lessened somewhat, but I still had exercise-induced asthma. Even walking in the cold could trigger an attack. I vividly remember asking my dad for a note to skip gym class when I was in junior high. We were starting track and field, and I knew it would involve a lot of running. (This was in Eugene, Oregon—Track City, USA!) Some classmates with asthma had notes, and I thought I could get one too.
But my dad simply said, “Steve, your mom and I have done everything we can to help you with your asthma. We’ve taken you to the doctor and paid for medication so you don’t have to miss out on anything. I’m not going to write a note so you can skip P.E. Take your medication and do the best you can.”
At the time, I was disappointed. I thought for sure I’d get a free pass. But looking back, I see how much that moment shaped my perspective. Throughout my childhood and teenage years, I played baseball, football, and basketball in city recreation leagues. I developed resilience and learned to live life fully, despite having asthma. I even played baseball in high school and participated in intramural sports in college. To this day, I’ve never felt like asthma has held me back from anything I wanted to do.
I’ve overheard parents describe their children in limiting ways:
“Oh, he can’t do that—he’s asthmatic.”
“She’s hyperactive.”
“He’s Aspergery.”
Even with other conditions, we often hear things like, “She’s diabetic,” or, “He’s anaphylactic when he eats peanuts.”
This may seem like mere semantics, but the way we talk about these diagnoses matters. For children with physical, developmental, or emotional challenges, it’s essential to help them develop a sense of identity that isn’t tied to their condition.
This doesn’t mean there won’t be frustration or pain. Life inevitably brings struggles. Just as a chick must struggle to break free from its eggshell, we face challenges that help us grow stronger and develop resilience. Overcoming these struggles allows us to see ourselves for who we truly are.
Update: My daughter is now in her early twenties. She has undergone further medical testing, and there are surgical options available to help her. However, these options are quite aggressive and involve implanting leads into her brain, connected to a pacemaker-like device. She has decided, for now, to manage her seizures with medication and focus on living her best life.
While she still can’t drive, she has moved into an apartment across the street from us. She has a roommate who is a student at a local university, works three days a week at a recreation center, and has a white Labrador retriever as an emotional support dog.
As mentioned earlier, life brings struggles for all of us, in one form or another. Ultimately, how we navigate those struggles and manage life’s rough waters is up to us—no matter the cause.
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