Why I’m changing how I respond to hemophilia complications

As a caregiver, I'm not doing me or my sons any good by getting frustrated

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by Joe MacDonald |

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Several of my recent columns centered on my frustration with hemophilia entering my sons’ lives at the most unexpected times. I wrote about some extraordinary moments we shared that, in the twinkling of an eye, were interrupted by an unforeseen health complication. A sense of failure would permeate an otherwise wonderful day. Why couldn’t we enjoy a few days without hemophilia injecting itself into our lives?

As I thought about my reaction, I realized that what I wanted was unrealistic. What power did I have to summon the winds of fate to alter the course of a bleeding disorder?

The reality is that my sons continue to face the possibility of breakthrough bleeding episodes. Hemophilia doesn’t adapt to my schedule, but follows a natural pattern of behavior. No one can control when issues raise their ugly heads and affect my boys.

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Negative feelings aren’t helpful

I realized that my response to times of struggle wasn’t productive if my actions led to despair, anger, and frustration. My negative feelings weren’t helping anyone, including me. Perhaps a better approach would help me overcome the stress and anxiety I often feel during my boys’ internal bleeding episodes. I needed to acknowledge the truth that, whether or not hemophilia makes its presence known, it’s always there.

Running away from a bleeding disorder doesn’t make it go away. My boys’ blood will never coagulate the way mine does. Their factor levels will never naturally climb as high as mine. We’re created differently and, therefore, won’t experience life similarly.

So as a dad and caregiver, I must face a harsh reality: My sons have hemophilia, and they’ll have to deal with whatever complications come their way. My response can make the situation more or less bearable. I have two choices: wallow in self-pity and let anger mar a beautiful relationship with my boys, or fully embrace who they are, warts and all.

I’ve also realized that whenever I get angry or stressed about hemophilia, I unknowingly convey to my children that they live as flawed human beings. When my sons were younger and experienced problematic muscle or joint bleeds, I sometimes had trouble accessing their veins to infuse Recombinate (recombinant factor VIII) before any more damage occurred. I’d panic as I felt the clock race. But in those moments, I failed to realize my boys thought my frustration was directed at them. Without a word, they picked up the idea that they’re not good enough, that something’s wrong with them.

Yet I don’t believe that my children have an inherent flaw. To do so would contradict my way of looking at the world. I think all children come into the world in the perfect image of God, including those with chronic disorders. My response to hemophilia affects how my sons view life with the condition.

From this moment forward, I intend to change my relationship with hemophilia, redirect my negative feelings, and instead provide an example of hope. When an unexpected complication happens, and it will, I want to send a clear message: While dealing with health issues can prove difficult, it doesn’t have the power to steal my joy. I want to remind my sons that I love every part of them, even hemophilia.

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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