Many of us have names that represent legacies and traditions handed down from generations past. My mom named me after my grandfather’s brother who died when he was 11. I often think of him and wonder if I carried on the family name with pride. Would he have been proud of me?
My wife and I continued the tradition by naming both of our sons after members of our families. We enjoy saying our stinky boys’ names because when we do, we remember loved ones who are no longer with us. It is our way of paying homage to ancestors who forged our paths. We travel our journey, carrying nuggets of love and hope given to us by those before us.
In delving deeper into my sons, I cannot help but think about another name that some people call them. Something that I don’t like to hear. Sometimes they are referred to as hemophiliacs. I’ve never agreed to that name and avoid referring to any child by the name of a disorder. Medical diagnoses should not define my sons and others in the bleeding disorders community.
Now, I am not one of “those” parents who deny that my boys have hemophilia. Far from it. Our whole family participates in the bleeding disorder community and we are prominent advocates for treatment and patients’ rights. We attend annual conferences as often as possible. For us, hemophilia is a part of our lives. We do not deny its presence.
However, while we acknowledge the diagnosis, we do not call our children hemophiliacs. In other words, who they are is not based on what they have. I do not call myself a diabetic. I say that I have diabetes. Disregarding the same protocol for my sons would indicate I don’t take them seriously. They are much more than hemophilia; they are sons, students, mighty men who seek to make the world better because they are here. A bleeding disorder is only a part and not the whole, not the definition of an identity.
What is in a name? The answer is many things. We are a fantastic rainbow of people who continue to fulfill many dreams begun before we were born. These dreams were forged on the backs of those who came before us, and we should seek to make our ancestors proud. A name is not about a disease or disorder. It is about the hopes of a mother who gave you life.
We carry our names into the future to make a difference in the lives of everyone who crosses our path. So, take your name and wear it proudly. In it are hopes and dreams for something better than what went before. Let us remember to encourage and appreciate our children, grandchildren, aunts, uncles, and others who live amazing lives with chronic illnesses. May their names reflect their heritage and future, not a disease.
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.