Both of my sons have expressed frustration at having a bleeding disorder. After experiencing a problematic infusion, each has cried out, “I hate having hemophilia!” While they are almost 10 years apart, the same response lets me know that they are “getting it.” Sticking a needle in a child’s arm or a port-a-cath is not easy. Frustration and anxiety strike both the sticker and the stickee. Sometimes, the process of getting the medicine into a little body creates an environment that is overwhelming, and at times, paralyzing.
“Daddy, I hate having hemophilia!” The statement rang in my ears. What could I say that would bring some relief? I am his father. I am supposed to know how to answer anything. I tell myself that I have all the answers for my sons, but I found myself at a loss. I didn’t want to only acknowledge my sons’ pain with a cookie cutter answer. They were my guys, and it was my responsibility to answer them well. My answer has developed over the 10 years that separated the mighty men in my care.
I responded to my oldest son by saying, “I know you hate having hemophilia. I do, too.” I acknowledged my son’s pain by sharing his feelings regarding a bleeding disorder. He had every right to dislike the very thing that brought discomfort and agony into a world that should not include a medicine cabinet that could rival a pharmacy’s stock. My statement affirmed him and supported his feelings. I joined him in his dislike of hemophilia. We were in the fight together. Bring it on! The MacDonald guys would beat it!
Ten years went by, and at about the same age that my oldest first made his statement, my youngest exclaimed with the same words: “Daddy, I hate having hemophilia!” This time, I responded differently. I said, “Son, you have hemophilia, and I love all of you. I can’t hate hemophilia.” His eyes glowed at that. No smile proved better than when I witnessed a fantastic grin from ear to ear. The room filled with joy and we laughed and finished our “night, night” rituals. He knew his daddy loved him more than anything else in the whole world.
The lesson I learned from both of my amazing men included the realization that they processed their understanding of bleeding disorder life in their own time and their own way. While I grappled with my issues, my sons needed space to share their frustrations and struggles. Peace in my life came as I helped both boys discover the answers to their problems. I hope that I may continue to provide them a safe environment to express their feelings. Our connection with each other is the most significant gift that life can bring. The minute they hit my door, my wish is that they can breathe a sigh of relief and say to themselves, “I am home. I am loved beyond anything I can imagine. The rest doesn’t matter.”
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.
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