Never Let Go of Your Passion When Dealing With Hemophilia

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by Joe MacDonald |

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Passion motivates us and puts a fire in our belly to strive for something outside ourselves. Without a sense of purpose, we become less motivated to rise above our current situation and struggle to find a key ingredient to a happy life. As we strive to find our way, hope is that extra ingredient in a life of passion. On the journey to discovery, a guiding light leads us on a voyage into the unknown, and we become anxious to uncover the source of that spark.

My passion is singing. In third grade, my school took a field trip to downtown Houston to watch “The King and I.” I saw the production and discovered a place I never knew existed. I thought, “I need to be on the stage singing with the rest of the children.”

For many years, I tried to ignore the strong call I felt to the stage, but my love of being in front of an audience never left me. I still carry the joy of making music and tell everyone that the performing arts are my first love.

Only one thing has challenged my passion: hemophilia.

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When dealing with chronic issues related to the bleeding disorder of my youngest son, Caeleb, life fell into chaos. We cared for him in the hospital while managing other responsibilities at home. I worked; took my oldest son, Julian, to school; and returned to the hospital to be present with my wife and my boy. I had no time to sing, as my family’s immediate needs required constant attention.

Without realizing it, my passion seemed to disappear as I found within myself a very weary soul that was facing a battle. Yet I pressed on for the sake of my loved ones, forgetting that I no longer took time to nourish my soul or open my mouth to sing. Caring for my boy required all my attention, and I surrendered my love for singing to the demands of caregiving. Little by little, my hopes faded, and I moved forward and tended to Caeleb’s needs.

I didn’t hold my son accountable, but I realized that it felt like the source of my strength no longer existed. I thought of the Psalmist looking up to God and asking, “But how could we possibly sing the Lord’s song on foreign soil?” (Psalms 137:4, Common English Bible). Hemophilia ripped us out of our lives and took us far away to a place we didn’t know. The fire of passion lost its flame as we encountered feelings of hopelessness and loss, to which we couldn’t give words.

In my struggles, I forgot that the one constant part of life is change. Situations that seem bleak today fade by tomorrow, and the most crucial part is that we can rediscover our passions after the struggle ceases to rear its ugly head.

Sometimes, one must put first things first when handling major health concerns. The good news is that we don’t have to abandon the things that make life worth living. There will come a time when we rediscover that which brings us joy.

We hold on to our passions because they give us the strength to face the cruelest days. Embracing an essential part of ourselves reminds us to hold tight and keep things close to our chest when struggling with the complications of a bleeding disorder. Hope follows chaos, and our desire drives us on to the next journey, where we will see the ravages of disease once again. In our most desperate times, the light comes to clear the darkest of nights.

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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