My Hemophilia Investment Portfolio Yields Excellent Returns

Depositing time and effort pays off in the end, columnist Joe MacDonald says

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by Joe MacDonald |

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First, I want to make something clear. This column isn’t titled “In the Twinkling of an Eye: The Money Issue.” When I speak of investing, I mean directing our energy to different areas of our life. Think of it as depositing essential acts of kindness and assistance to those we hold dear.

As caregivers of children with bleeding disorders, we must confront life experiences that most people never face. For instance, I don’t know many families with a small pharmacy as part of their kitchen decor. Likewise, none of my friends outside the hemophilia community have war stories of spending multiple holidays in the hospital.

Yes, many have tonsils and adenoids removed, but hospital stays generally last no longer than one or two days. In the hemophilia community, we often experience many weeks of hospitalizations due to spontaneous internal bleeding episodes. Life becomes a balancing act among our children’s siblings, work, other outside commitments, and a chronic disorder.

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Sometimes, managing the chaos of hemophilia proves overwhelming, and the rest of our lives become challenging to maintain. Several years ago, for example, when my youngest son, Caeleb, was hospitalized, I spent Saturday nights with him. My wife and I would switch places after three nights. We learned that 72 hours was the maximum time we could function well in the medical environment.

I gladly began my stay on Saturday night. As a pastor, I had to work on Sunday mornings, so I woke up early at the hospital. I ran home long enough to shower and change into my Sunday best, went to church, went back home for just long enough to eat lunch and change clothes, and returned to the hospital. I’m sad to say that this insane schedule lasted for many years.

In the middle of chaos, I didn’t blink. My family needed to help one another weather the medical storm. My clergy friends don’t have children who require prolonged hospital stays — a reality that calls for constant schedule changes and strenuous efforts to balance all aspects of daily life with a bleeding disorder.

I often look back on our struggles and realize that my wife and I possess a strength that can move mountains. Perhaps the struggles we faced brought us closer. If there is a silver lining, it might be the incredible bond we’ve formed as we support each other through challenging circumstances. The spiritual return on our investment is a hundredfold.

There are moments when I feel overwhelmed, and the struggles of managing all the moving parts of my life prove too much. I acknowledge that everyone sometimes feels out of sorts, but the added issues related to a bleeding disorder compound day-to-day activities and schedules in unique ways.

When Caeleb played Little League baseball, I remember watching him from the sidelines. He hit a ball, and my heart soared. But my boy’s participation was different because, as he ran to first, I could see that he was struggling to make it to the base. Then, he couldn’t make it to the next base. Little did we know that running had initiated an internal joint bleed in his right ankle.

He spent the next two weeks in the hospital as his medical team treated him. I thought, “Other parents hope that their children run the bases in the correct order, while I worry about whether my son can participate at all.”

While not hoping for pity or sympathy, I realized that my son required different attention from many other children and that my investment in my son’s care wasn’t the same as that of the other team parents.

My spiritual investment portfolio is very rich and possesses great depth. This surplus exists because I place all my spiritual capital in the wealth of life experiences that seem to collect more interest the longer I live. The most beautiful part of this investment is that I’ll never go bankrupt; instead, I’ll survive on all the joy that years of deposits give me in return.

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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