Although my sons, now 15 and 24, are different as night and day, they both began asking questions about hemophilia at about age 5. I tackled the tough issues they wrestled with, always acknowledging that their problems contained merit.
At 5 years old, they each asked the same question that I could not answer. “Dad, why do I have hemophilia and other people don’t?”
I wanted to answer truthfully, without all the trite little answers I kept hearing from well-meaning people. To place the blame on God did not sound right. How could I explain that a loving deity created my children perfectly and then cast a chronic illness into their world? To imply the condition was a result of divine appointment seemed utterly contrary to the faith foundation I hoped to impart upon my stinky boys.
I faced a question that religion could not answer. Why do my sons have a bleeding disorder? The only answer I could give relied on scientific evidence. Their eighth clotting protein proved damaged, and therefore, solid clots could not form. I spoke the truth without the assurances of my faith. I relied on the intermingling of scientific fact and divine explanation. I don’t believe that religion and cold hard evidence have to speak independently of one another. Each adds a piece to the whole person.
So, let us return to my boy’s initial question. I gave the best 5-year-old answer I could. “Son, you have hemophilia because something happened that causes your body to not clot when you have a bleed.”
The next set of lessons concerned how one lives with a bleeding disorder. This is where faith stepped in. In my religion, community power is overwhelming and carries a huge responsibility both to and for one another. My participation in worship acknowledges my neighbor’s humanness. Together, we celebrate divine intervention weaving in and out of the lives of all who participate in our faith practices.
Spiritual rejuvenation finds its way into conversations of hope that we hear from stories. How much can my children offer my worship community, then adhere to faith practices that enrich others’ lives? How many people draw hope from my sons’ stories of strength in facing adversity? Likewise, how rich is my boys’ increase in faith when they hear their friends and neighbors talk about overcoming incredible odds to live a better life?
Quickly, we learn that a faith practice allows us to share stories and gain strength from one another. We discover hope in the middle of our struggles and transform our ability to stand as a living witness to the lives of our fellow human beings.
Maybe the answer to the initial question, “Dad, why do I have hemophilia?” is not limited to a simple expression of biology. Perhaps the question serves as a tipping point to other parts of our humanity. To answer the question ultimately requires further questions that explore both fact and faith. Fact, my blood does not clot like everyone else’s. Faith, through divine intervention, I rely on holy arms to reach out and provide me comfort as I live with my chronic illness.
My sons, who are no longer 5, still wrestle with living in the world with a chronic bleeding disorder. Questions continue to challenge what they know and what they believe. I hope that no matter what they explore, they may be whole individuals that wish to make a difference in this world. Science and religion combine to create wholeness and, in so doing, create a path that leads to hope and joy.
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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