A new definition of strength, as seen through the eyes of a child

To my daughter, her father is as strong as any cape-wearing superhero

Alliah Czarielle avatar

by Alliah Czarielle |

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I wish more people would see my husband, Jared, the way our daughter sees him.

In her eyes, he’s a revered figure, just short of a cape-wearing superhero. Now nearly 5, she’s at an age when most little girls demonstrate a special, almost romantic, adoration for their daddies. But perhaps hers is a bit stronger, since Jared has served as her domestic parent throughout her childhood. We both contribute to parenting, but over time, he has taken on the role of a nurturer, whereas I tend to act as a provider.

To our daughter, Jared is her safe space, her protector, and her carer. His strong arms are always ready to scoop her up whenever she feels scared, tired, or sleepy. His broad shoulders and soft stomach are like a cozy blanket enveloping her in peace. His powerful hands are always ready to tackle the most tightly sealed bottles and jars, and the most challenging packets of candy.

One time, she saw me struggling to open a particularly difficult tube of candy. She quickly reassured me, “It’s OK, Mommy. Daddy can do it when we get home. Daddy is strong!”

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A seeming paradox

The term “strength” often conjures images of invincibility and unyielding power. But when it’s paired with “hemophilia,” it might seem like a paradox. Hemophilia, a rare genetic bleeding disorder, is characterized by a deficiency of clotting factors in the blood, which can lead to spontaneous and sometimes life-threatening bleeding episodes. One might wonder how being strong with hemophilia is possible, or if it’s even realistic.

This seeming paradox stems from societal perceptions about what it means to be strong. We often equate strength with physical prowess, the ability to endure without showing vulnerability, or overcoming adversity effortlessly. Hemophilia, with its inherent bleeding risks, might seem to challenge traditional notions of this attribute. In reality, it redefines them, showing that true strength goes far beyond the physical.

The type of strength our daughter knows

Hemophilia demands a unique type of strength — one of character, resilience, and adaptability. Those who live with hemophilia understand that facing its challenges (bleeding episodes, joint damage, medical uncertainty, etc.) require immense inner fortitude. This strength is quiet, yet powerful, often unseen by others.

It involves confronting uncertainty every day, never knowing when a minor injury might become a major problem. It means enduring countless needle sticks and invasive procedures with unwavering courage. It’s living with caution as a constant companion, without being ruled by fear.

The strength of people with hemophilia is also rooted in knowledge. They must understand their condition and treatments, advocate for themselves, and navigate a complex healthcare system with determination. They learn to infuse clotting factors, recognize the signs of a bleed, and have the courage to seek help when needed.

Moreover, the strength of a person with hemophilia also extends to their determination to pursue their dreams and aspirations. Many people with bleeding disorders lead successful lives, whether they’re pursuing a career, building a family, or engaging in their passions.

Our daughter may not be able to articulate this just yet at her young age, but I’m sure this is the type of strength she knows.

Embracing a new definition

In a world where the most recognized image of the strong man might be the idealized superhero —  invulnerable, resistant to physical damage, and, by extension, perhaps immune to disease — it’s about time we embraced strength in the form of grit, resilience, and the ability to thrive in a reality full of challenges.

Strength is not just a physical attribute. It’s an unyielding spirit, an indomitable will, and a heart filled with resilience and determination. To be strong with hemophilia is not a contradiction; it’s a testament to the capacity for courage and adaptability in the face of adversity. It’s a reminder that strength, in all its forms, should be celebrated and admired.

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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