When our youngest son, whom we affectionately call “MacDonald the Younger,” was diagnosed with hemophilia, my wife and I didn’t know how to respond. We were in a state of shock and hadn’t thought something like this was possible.
Later, we learned that my wife was a hemophilia carrier, which changed the narrative of our story. We took the news with heavy hearts as we remembered the struggles of “MacDonald the Older,” our firstborn son, who battled needles and many hard infusions of factor VIII treatment.
From our perspective, another child dealing with bleeding issues was a blow to our system, and we mourned the disease. We loved our boys with all our hearts, but the thought of going through the difficulty of treating spontaneous bleeds, finding veins to access, and dealing with insurance issues, left us feeling shocked and afraid of the future.
Many well-wishers had the best intentions when giving us advice, but nothing seemed to console us. We heard people say things like, “You have experienced this before, and you will know what to do.”
Friends and family expressed this perspective to reassure us that all would be well, because we knew how to raise a child with a chronic bleeding disorder. They emphasized that experience would work on our behalf. Lessons learned in the older son’s struggles could help us handle whatever would come our way with the second child, they reminded us. And I give thanks every day for their show of support for my family.
I think the perspective that absolutely shocked my wife and me came from our oldest son. When we told him that his younger brother had hemophilia, he grinned and accepted the news gladly. “Great, Dad, he will be like me, and we can understand each other,” he said.
My wife and I looked at each other as we realized that he viewed things completely differently. He cheered upon hearing the news of a chronic bleeding disorder. He no longer felt isolated in a sea of family that didn’t know what hemophilia meant. This new guy would see things his way.
My heart soared upon hearing my elder son’s reaction.
Several close friends in the bleeding disorders community stood by our side. Their perspectives came from their experience of raising children with hemophilia. They knew our concerns in a way that no one else could. Our blood brothers and sisters held our hands and reminded us that we share this journey.
We made commitments to one another to stand firm with each other, even in the roughest of circumstances. Together, our group remains close and never lets us go. Their compassion is a sight to behold, and every day I give thanks for their friendships.
Over time, I realize that there is no right or wrong point of view about this issue. Everyone touches our hearts in different ways. Each reminds us that we are not alone, and that we carry the hopes, dreams, and strength within us as we journey through the land of chronic illness.
Our sense of self isn’t limited to only one set of eyes, but rather many hearts that hold us close and refuse to let us face our journey on our own. We are the sum of many points of view that speak kindness and love into our lives and let us know that we do not travel alone.
We learn that community is crucial as we face good times and bad. Today, I hold my loved ones high and realize that no matter what perspective I may have, I know that I am blessed.
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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