Understanding what being a parent with a disability means to our daughter

I’ve realized that one of the greatest challenges of parenting is teaching children how to care for others without making them feel responsible for everyone’s well-being. This is especially complicated when one parent lives with a disability or chronic illness.

My husband, Jared, has severe hemophilia B and epilepsy. Our 7-year-old daughter has grown up knowing that Daddy sometimes needs medication, that certain activities require precautions, and that medical emergencies are a possibility in our household.

I’ve written before about how naturally she’s accepted her father’s conditions. What other children might find frightening or unusual has always been part of her everyday life.

But as she grows older, her understanding of disability is changing. She’s becoming more capable of anticipating consequences, recognizing potential dangers, and imagining what might happen when things go wrong. And with that awareness comes an interesting parenting challenge: How do we teach her to look out for her father without making her feel that she needs to look after him?

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When concern becomes overprotection

As a care partner, I understand the instinct to anticipate the worst. I’ve spent years thinking about the availability of treatments, managing medical emergencies, and preparing for situations that might never happen.

But I’ve also learned that there’s a fine line between protecting someone and limiting their independence. Sometimes our attempts to help can communicate an unintended message: I don’t trust you to manage this yourself.

My husband has spent his entire life adapting to his conditions. Through eight years of marriage, we have learned to navigate parenthood and everyday responsibilities on our own terms.

I want our daughter to recognize that her father is capable of making decisions about his body, his activities, and the assistance he needs. Having a disability doesn’t automatically mean someone needs help. And even when someone does need assistance, that doesn’t take away their right to participate in decisions about their own care.

But concern isn’t always ableism

At the same time, I don’t want our daughter to believe that worrying about someone’s safety is inherently discriminatory. Hemophilia and epilepsy carry genuine medical risks, and pretending those don’t exist wouldn’t make our daughter more respectful of disability. If anything, she might feel more afraid to speak up.

Instead, I want her to understand the difference between assuming someone is incapable and expressing concern about something that could happen.

There’s a difference between telling someone they can’t do something because of their disability and asking whether they’d feel more comfortable having assistance. There’s also a difference between insisting that someone needs help and admitting that we would feel safer with another adult present. Respecting someone’s autonomy shouldn’t require us to disregard our own feelings.

She’s our daughter, not our caregiver

Perhaps the most important lesson is that our daughter’s growing awareness of disability shouldn’t become a responsibility to manage it. We want her to know what to do during an emergency. Age-appropriate preparedness, including a family seizure action plan, can help her understand when and how to seek assistance.

But there’s a difference between teaching a child to respond to an emergency and expecting her to prevent one. She shouldn’t have to spend her childhood anticipating every possible complication or constantly monitoring her father’s health. That’s our responsibility as adults. Her responsibility is to be a child: to explore, make mistakes, ask questions, and enjoy ordinary moments with her father.

Ultimately, I hope to raise a daughter who recognizes that people can be both capable and vulnerable. She can offer help without assuming it’s needed. She can express concern without making decisions on someone else’s behalf. And she can acknowledge her fears without allowing them to define another person’s abilities.

As parents, we also have a responsibility to listen when she tells us that something makes her uncomfortable and to make sure appropriate safeguards are in place. We’re teaching her that everyone deserves autonomy, including people with disabilities. But that principle applies to her, too.

I want her to grow up understanding that loving someone doesn’t mean protecting them from every possible risk. Sometimes it means trusting them to make their own decisions, while knowing that asking for help is always an option.

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 consult your physician or another qualified healthcare 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.