A Unique Perspective on a Season

Before having children, my definition of a season of life did not contain color. Everything appeared black and white. If there was a medical issue, it lasted for a little while and soon passed. Nothing remained for long.

The most significant medical problem I faced was when I broke my leg at 11 years of age. A six-week visit in a hospital and one month in a cast proved my most difficult medical hurdle. I was healthy through my early years, and illness seemed like a faraway thing.

When I entered my teen years, I caught my first glimpse into the world of a caregiver without realizing it. One day, I came home from school and discovered that my grandfather required immediate medical help. He had had a stroke and needed professional assistance.

The scene was almost more than I could bear. I was 13. What did I know about caring for someone, especially an adult? I quickly called an aunt, and she came. We phoned the fire department and asked for an ambulance as soon as possible.

Time passed, and my grandpa recovered, but he learned that he had developed a chronic illness called congestive heart failure. My mother told me that my grandfather’s heart would continue to lose muscle and not work correctly. We had to remain strong and help my grandmother. I did not realize it, but this was my entrance into the world of caring for someone with a chronic illness.

Years passed, and as my grandfather’s health declined, my mother changed her shift so that she worked at night while the rest of my family stayed at home. At 16, I got my driver’s license. If there was a health scare, I could drive him to the hospital. She slept at home during the day. Several times, I got up and drove him to the emergency room in the middle of the night. Many nights, I went to high school on about three to four hours of sleep. It wasn’t easy, but I did not mind. I played a significant role in helping my family.

I did not realize that my training as a caregiver prepared me for life with my children. Something within me knew how to care for them. I lived through late-night ventures to the hospital and worried about balancing a working schedule and time with someone with a medical issue. I learned that nothing else mattered but the care for my loved one. These lessons helped me understand the role I played as a father, husband, advocate, and pastor. Everything required my attention, and so I learned to prioritize.

Of course, I was not a frightened 16-year-old boy with my children. I carried the lessons I learned into adulthood. I discovered that chronic illness does not work on a set schedule but makes its presence known at the most inopportune times. No matter where or when, once someone needed help, it was my responsibility to lend a hand.

Every pain my sons felt from a severe bleeding episode, every tear shed from feeling overwhelmed, every plan that required changing, I instinctively knew how to rise to the challenge. I knew the feeling of jumping off an emotional cliff and feeling unsettled until the storm passed.

I learned the most valuable lesson of all. Chronic illness contains many hues. It is not black and white but engages many different colors.

Once the cast came off my broken leg, I could visualize the end of my struggle. In our lives, hemophilia rears its ugly head from time to time. There is no such thing as the end of treatment. We forge ahead, embracing the hope we find in one another. Each season reveals the next but never truly comes to an end. There, in the richest of colors, we embrace the essential part of life: the joy of being connected to those we love.

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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.