Finding Balance Between Fatherhood and Advocacy

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by Joe MacDonald |

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I will never forget the day my wife told me that she was pregnant with our first child. I stood there, unable to process her announcement of our boy’s impending entry into the world.

I couldn’t fathom how my life would change. I struggled to figure out how I might be the father that my son needed as I gazed into space. “Oh, my goodness,” I thought. “This baby will look to me to be his greatest champion.” I questioned whether I could handle the responsibility of raising a child in this world.

My stinky boy made his presence known on a very stormy evening in June. While my wife was in labor at the hospital, lightning struck a nearby electric tower, and we suddenly found ourselves without lights or air conditioning. A generator kicked in immediately, giving us light, but not cool air.

We were living in Houston at the time, where central air is a necessity during the summer. My wife kept telling me that she felt warm. I told her that all was well, but held back the information about the rising indoor temperature. Then, the medical team informed us that my wife needed an emergency cesarean section due to labor complications.

Soon, in a surgical room equipped with 10 box fans, my wife gave birth to our first son. A nurse asked me if I wanted to walk my boy to the warming table. I gathered my priceless treasure in my arms and started singing to him for the first time. He stopped crying and looked around to acknowledge that he knew my voice. I smiled, knowing he would be a musician.

The world seemed to stop as I made my first connection with this incredible human. I continue to hold that moment in my heart more than 25 years later, and will always cherish our first minutes together as some of the most sacred of my life.

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I Stand Beside My Son as He Battles Hemophilia

Within days, my joy gave way to uncertainty as doctors entered our hospital room to explain that our son had severe factor VIII hemophilia. I couldn’t fathom what this meant for my boy, my wife, or me. I kept wondering, “How in the world does this strange twist in the story affect my role as a father?” I didn’t understand how much our lives would change due to my boy’s chronic illness.

If I had doubts about my ability to be a good father, my insecurities substantially grew as I tried to grasp what fatherhood might look like amid a bleeding disorder I knew nothing about. So many questions regarding my fitness to raise a child with hemophilia blinded me and knocked me off balance.

As time passed, we developed a routine that included baths, feeding, and prophylactic infusions. I settled into my role as caregiver and advocate as my wife and I learned how to provide our boy with the best possible care.

We depended on our excellent local hemophilia treatment center to help us navigate the waters of chronic illness while finding the right balance of family life. One of the great lessons they taught us was how to manage our son’s medical needs with his psychosocial development. Additionally, the incredible staff welcomed us into their family, giving us solid footing as we maneuvered the world.

Over time, I learned how to balance the roles of father and advocate. I discovered that the combination provides the best life possible for my stinky boy.

In certain situations, one role must be dominant. Eventually, I instinctively knew how and when to switch between the two. In every scenario, I ask myself, “What does my boy need to be whole?” Sometimes the answer is stupid dad tricks, and other times, it’s care during a medical crisis.

Whatever my son may need, I remain by his side as his greatest cheerleader, rooting him on through his journey.

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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