The effects of growing up with a chronically ill parent

Kids have a way of flattening the extraordinary into the ordinary. My 6-year-old daughter once scraped her knee, looked down at the blood, and calmly said, “Like Daddy, because he bleeds.”

Then there was the day she spotted a cockroach flipped upside down, thrashing helplessly on the floor. Without hesitation, she jokingly announced, “That cockroach is having a seizure.”

My husband, Jared, has epilepsy as a complication of hemophilia. Two decades ago, a bleed in his brain left behind scar tissue. That scar tissue became the trigger for the seizures he lives with today. In our home, hemophilia and epilepsy are intertwined, two conditions with one root.

Seizures don’t frighten me anymore. I’ve seen too many of Jared’s, and I know what to do. I can tell when one is passing and when it’s veering into true emergency territory.

What still strikes me, though, is how most adults catch a glimpse of him losing consciousness and immediately think crisis. My daughter, on the other hand, would simply say, “Daddy’s having a seizure,” giggle at his odd movements, and recount the episode back to him when he regains his awareness. (Jared doesn’t mind this — he says he’d rather have entertained someone than made them worry.)

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Normalizing the ‘abnormal’

What struck me in both moments above wasn’t just what my daughter said, but how she said it: casually, as if she were describing the weather. For her, blood and seizures aren’t specifically medical events at all — just part of what it means to live with Dad.

That’s what kids do. They normalize what adults still stumble over. Where others might panic at the sight of a seizure, she sees Dad having another episode. Where someone else might gasp at the sight of blood, she shrugs it off as familiar.

There’s a paradox here. What’s abnormal to the outside world is, in our family, simply background noise. That doesn’t mean it’s easy, but it does mean my daughter is growing up fluent in the language of hemophilia and epilepsy without me ever needing to sit her down to explain.

What children absorb without us teaching

The most humbling part is realizing how much she learns without me actively teaching. I’ve never told her to compare blood from a scraped knee to her father’s bleeds. She made that connection on her own.

I’ve never described cockroaches as having seizures, either. Yet she took the movements she’s seen in Jared and mapped them onto the insect in front of her. It sounds dark, but in her own way, it shows how deeply she understands what her father goes through.

Just a few days ago, during one of Jared’s infusions, she happily volunteered to help. With steady little hands, she popped off the vial caps, pushed in the vial adaptors, hydrated the powder with sterile water, and drew the liquid suspension back into the syringe — ready for her dad to infuse. To her, it wasn’t frightening or clinical. It was simply another chance to be helpful, another part of family life she was proud to take part in.

Sometimes, her observations unsettle me. Should a child really know this much about bleeding and seizures? But then I remind myself: This is her reality, just as much as school, gymnastics, or swimming lessons. She isn’t traumatized by it. If anything, she’s coping.

Lessons from a child’s perspective

What I take away from these moments is twofold. First, kids are more intelligent and resilient than we give them credit for. They can handle truths we think will crush them. Second, their perspective can be grounding.

Where others still carry fear and tension, my daughter has already integrated these realities into her worldview. She helps me see that illness doesn’t have to define our family in the ways I sometimes fear it does. Yes, hemophilia and epilepsy complicate daily life. Yes, I still carry the weight of worry. But through her eyes, I catch glimpses of how these conditions can exist without overshadowing everything else.

Her casual remarks don’t erase the challenges. But they remind me that in a home shaped by rare disease, normal is what we make it. And sometimes, the smallest voices show us how.

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.