Finding Meaning in the Sacredness of Life

I am a pastor and a parent of two sons with hemophilia, a rare, genetic bleeding disorder that occurs in about one in 5,000 male births.

My youngest son has a high-titer inhibitor, which means his immune system has developed antibodies to factor replacement. He’s also had an allergic reaction to recombinant factor VIII, the medicine that treats bleeding episodes. Both issues have made our lives a little more complicated.

Until my younger son’s ninth birthday, hospitalizations were frequent, lasting multiple days and sometimes weeks on end. As of this writing, my stinky boy has not suffered an internal bleeding episode in six years. We feel grateful for the life-changing therapies that have transformed his life.

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As a pastor, there are times when my children’s medical needs must outweigh the spiritual needs of my congregation. Life can sometimes be a delicate balancing act as I fill the roles of pastor, caregiver, friend, father, and husband, to name a few. I hope to fulfill all my tasks to the best of my abilities. However, there are times when my life turns upside down, and I must hold down the fort, power through the storms of my life, and protect those entrusted into my care.

I deal with these various positions while pondering how God’s beauty can manifest in life’s most horrible moments.

My youngest son once reached a milestone in his treatment that would take us to the next level. He could move from a bypassing agent to infusing factor VIII. The product change would minimize breakthrough spontaneous bleeding episodes and give him a better quality of life.

Unfortunately, he had an allergic reaction to the medication we desperately hoped he would start taking. The bad news is that we would not step forward in his treatment until several years later. The good news is that we didn’t take a step backward.

While I was grieving that we would not begin a new part of our journey, people spoke words of comfort to me. I appreciated those who thought of my family and reminded me that holiness lives within the community.

In my particular circle of loved ones, I discovered how the beauty of the Divine manifested in my situation. When I thought all seemed lost and sought refuge, I found hope reassuringly expressed through the many men and women of faith who encouraged me to continue my journey. Thus, I found the strength to hold on to hope.

For those who suggested that my sons’ bleeding disorders came from the Divine to test my family, I say, “Hogwash!” I don’t believe that it was ever in God’s plan to make my family suffer through some insane trial, but I think we can find the sacred in any situation.

Hope can reveal itself even when there seems to be no hope at all. Divine light can appear as tiny as a glimmer and still radiate into places of darkness. With this spark of illumination, we discover the brilliance of absolute light. I believe that in the deepest parts of our souls, supernatural healing awakens hearts and minds.

My sons will most likely never achieve physical healing from their bleeding disorders, but they will experience the miracle of the presence of God that transforms the world. Our family holds fast to these acts of God that restore us and make us whole. We hope and pray that regardless of physical issues, we can rest assured knowing that the sacred that lies within us can awaken the strength to journey forward.

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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 Services, and are intended to spark discussion about issues pertaining to hemophilia.