Many years ago, friends told me about a workshop they attended, which addressed newly diagnosed patients with bleeding disorders.
As they talked about the class, I agreed with everything I heard until one of the facilitators said that with a new diagnosis comes a sense of mourning. “Yes,” I thought, “there is a time to mourn the life that our loved one will not have, the way we raise this child, the unknown complications that may or may not occur.”
The one statement that stood out regarded mourning that we did not have a perfect child. I wanted to shout, “What do you mean ‘not perfect’? My son is amazing!” I grew angry and closed my mind to anything else anyone had to say about the event.
What made me so mad? I realized the answer rested in the definition of the word “perfect.” Is my boy any less whole than those who do not live with a chronic illness? I think not. Hemophilia does not define his humanness. Still, I struggled with this idea and wondered if my presumptions blinded me from reality. Was my son not considered “perfect” due to his illness?
I am a pastor, so I turned to the Bible to reflect on my question, and to my horror, I did not discover any comforting passages. I felt as if my entrance into fatherhood expelled me from my faith. In every passage I read, sacred stories uncovered many “healings,” all initiated by heavenly forces.
I came to a standstill and felt very unsure of which way to go. How could I stay in a religious tradition that appeared to speak out against those with chronic illnesses? In God’s sight, was my son flawed and unable to participate in my faith fully?
I set out on a journey to discover if the initial interpretations of passages offered ways to delve deeper into richer forms of understanding. One day in my master’s program, I heard a lecture about how children with medical issues read the healing stories taken from the Bible. Do they dismiss the parts that, on the surface, do not make sense? Surely there must be a way to find meaning in all sacred texts.
The professor had written a book concerning Biblical understanding and how children with medical issues find hope, even in the miracle stories. The professor’s premise challenged the understanding of the word “perfect.” Her thoughts centered on two things: the idea of healing versus wholeness, and divine perfection in humanity’s heart.
When reading passages on a surface level, true healing occurred on the surface — but something much more profound happened. Faith from humanity initiated the concept of wholeness. Physical healing was not the only part of the finished product.
While allowing for a richer understanding, I still did not agree with the result. Wholeness still depended on the physical body.
The professor’s second proposition made more sense to me. Her thought was that we have the perfect etched in our hearts when we come into this world. A body cannot defile our perfectness. I found my answer. Not in the way that I thought, but in a way that gives identity wholeness and physical healing.
I do understand that my son has hemophilia, and as such, must adhere to certain physical limitations. While that speaks to his body, it does not define his soul, the place where the perfect dwells. My son is not a flawed creature because of a bleeding disorder. He, like every other child, is precious and brings value to our world. We must work to build our sons and daughters up so that they may celebrate who they are, chronic conditions and all.
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.