How growing up with a chronically ill parent has benefited our daughter

Reflecting on the gifts that come from having a dad with hemophilia

Alliah Czarielle avatar

by Alliah Czarielle |

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My 4-year-old daughter, Cittie, recently invented a song about her dad. It’s sung to a tune that’s quite popular in children’s short videos, with the words “Daddy is a bleedy boy.”

When my husband, Jared, heard it for the first time, he cracked up. He’s often referred to himself as a “bleedy boy” in jest, due to his severe hemophilia B. Cittie apparently loved it, and thus decided to spin it into something creative.

The louder he laughed, the louder she sang. In no time, our bedroom was buzzing with cheerful energy.

A lighthearted approach to hemophilia

In our household, we take chronic illness lightheartedly. Since Jared has chronic illnesses and I’m diagnosed with mental health conditions, we know how difficult a flare-up can be. As such, we prefer to limit all seriousness to the clinical aspect of our conditions, and take a lighthearted approach to everything else.

Hemophilia can be stressful. Sudden bleeds may interrupt our family’s daily rhythm or occasionally spoil a fun activity. In addition, major bleeds are often painful and debilitating. Jared tells me that being unable to move for a while can be depressing, as it gives him feelings of uselessness and low self-worth.

Humor can be an excellent distraction in these scenarios, reminding us not to take things too seriously while waiting for the challenge to pass. Studies also show that laughter releases feel-good hormones that help regulate emotions and diminish pain.

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Hemophilia is part of our daughter’s life

Without a doubt, hemophilia is as much a part of Cittie’s life as it is her dad’s. Surprisingly, she’s well-adjusted to life with a chronically ill parent.

Even at her young age, she won’t fuss when Jared is down with a bleed and can’t play rowdy games with her. She treats it just like any illness and adjusts her play accordingly. Perhaps the flexible nature of her young brain has allowed her to adapt.

Having witnessed the ways we “play along” with Jared’s hemophilia — from assigning funny names to specific bleeds, to inventing silly rhymes and songs — she’s now able to make up her own jokes, much to the entire family’s amusement!

Unfazed by injections

Recently, Cittie got sick with a minor infection and had to go to the hospital for some tests, including some routine bloodwork.

Much to the technicians’ surprise, the giant syringe didn’t make her flinch! She was indifferent throughout the entire procedure, merely raising one eyebrow when the needle punched through her skin.

Once it was over, she bravely displayed the cotton ball taped to her arm, and showed it off to everyone. She even refused her bath for an entire day, as she wanted to show her aunts, uncles, and grandparents that she had been a brave little girl.

Cittie’s attitude toward needles is quite unconventional. Many people carry a fear of needles well into adulthood. Even Jared feared infusions as a child. He recounts instances when he’d cry unconsolably or run away from doctors in hopes of avoiding the needle.

Perhaps it’s because we treat blood transfusions as a bonding activity. She’ll look on every time Jared performs a factor infusion. Seeing the bright red backflow of blood signaling that the needle’s in the vein makes her giggle. Jared will lift the plunger repeatedly just to make her laugh.

We’ve taught Cittie about hemophilia early on so she doesn’t have to be scared of the prospect of hospitals and needles. Instead, we want her to know them as her dad’s lifesaving tools.

The gift of having a dad with hemophilia

Now and then, Jared and I remind each other about our wishes for Cittie’s future. And we both agree that, at the end of the day, we just want her to be a kind and empathetic human being.

We hope that she’ll be open-minded and accepting of a wide variety of people, given her diverse background. Not many children have parents with a rare condition.

We’re now beginning to see glimpses of that with her mature sense of humor regarding disability, her well-developed sense of security, and her sensitivity toward people who are physically or mentally unwell.

Having a dad with hemophilia may pose its challenges. We sometimes wonder what might happen if other children see her as different. Not all children are accepting of differences. But this is a bridge we will cross when we get there.

We’re simply thankful for the person she’s come to be. We hope that she will continue to carry these gifts from life with her dad well into her future.

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.


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