One thing that struck me over the head when I became a parent was an awareness that I bring my whole self to the table. When treating bleeds and other surprises, I show up with what I know — no more, no less. I cannot respond to my child beyond my ability to process what goes on in the moment. Whatever job I do, good or bad, is the best I have to offer.
When doctors diagnosed my oldest son with severe hemophilia A, or factor VIII deficiency, I knew nothing about what my family faced. I did not have life experience I could draw upon when treating or offering support to my boy.
Looking back, the moment of diagnosis became a time of crisis. Nothing prepared me for something so unexpected. What could I do to help my son and my family? The helpless moment brought anxiety, and somehow, I felt it were my fault that hemophilia reared its ugly head in my child.
My family’s saving grace came from the hemophilia treatment center. As we discovered a new community complete with new friends in the same medical situation, I realized our situation could improve by educating ourselves about our son’s bleeding disorder. I believe that learning new ways to be in the world opens many doors to various possibilities. A safe and nurturing environment equipped me to face many medical issues with faith and determination.
Over time, I found that many fathers of newly diagnosed children shared many of my initial concerns. I expressed my guilt and received support from others like me. As the father of the house, I discovered that my expectation to fix every problem myself was unrealistic. I carried guilt that was not mine to hold. Perhaps there was a different approach to solving some of the issues that were staring me in the face. I could offer the unconditional love of a parent, and support and encourage my stinky little son.
I took advantage of every education seminar conducted through the two prominent organizations in the bleeding disorders community, the National Hemophilia Foundation and the Hemophilia Federation of America. Both organizations provide safe places to process issues that occur when raising children with chronic bleeding disorders.
I met people in the medical industry, thereby extending my reach to those that are well-equipped with pertinent information regarding treatment and care. Meeting parents from different areas of the country offered crucial ways to find community and reminded my family that we share our diagnosis with others. We found time to take a breath and rediscover hope in the middle of our circumstances.
I look back on the man that stood in front of a medical team as they diagnosed our newborn son with the foreign term “hemophilia.” My first thought is, “That poor guy did not know anything about a strange-sounding diagnosis.”
I also admire him because he proved to the world that he was strong. He knew that more education brought empowerment and a sense of freedom, even in a medical crisis. He faced the journey all for the love of the stinky little boy that was placed in his arms, and redefined him as a daddy. I promised him I would move heaven and earth to provide him with a safe place to grow up and learn about hemophilia for himself.
We can only respond in ways that we know. We do not become parents and receive an instruction manual that teaches us how to walk through our children’s lives, or tells us if we should follow path A or path B. Our directive comes through on-the-job training. In the process, we discover beautiful moments of joy beyond description, all stemming from this new person in the world. Life never is the same, nor would I want it to be.
Through my stinky boy, I discovered far more than a bleeding disorder. I found love in ways I never thought possible. I am grateful for the journey.
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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