Before I share my story, I must make a disclaimer. The pastor/counselor side of me cannot continue without acknowledging that my story is not everyone else’s story. Some people in the bleeding disorders community do not have the support that many of us appreciate.
I can’t believe how amazing my fellow blood brothers and sisters are as they face the daily routine of dealing with chronic illness. They are my heroes without whom I could not imagine navigating the world of hemophilia. My group continues to teach me how to be present and care for my sons. Thank you to my amazing community.
The hero, or heroine, I want to talk about is my mother. She was in the hospital room with my wife and me when the two hematologists announced that my son, “MacDonald the Older,” had severe factor VIII (Type A) hemophilia. We were in shock. What did this mean for his life? How would we handle this?
I looked into my mother’s eyes with a feeling of helplessness, and I saw the one thing that I always drew from her: strength. Ruby Jane could take any of life’s complications and make it better. I knew that everything would be OK because I had her on my side to navigate the waters of a bleeding disorder of which I had previously been hardly aware.
What I did not realize at the time is that the bond my mother shared with me could not equal the connection that she shared with her first grandson. We later learned that her love proved big enough to handle both “MacDonald the Older” and “MacDonald the Younger.”
One clear memory still shines in my head. The doctor was in the room and assured us that my son would have a long life. Treatment changed three years before his birth, and product moved from plasma-derived to synthetic. We were spared the horrific accounts of contaminated blood products and the prejudice that held the community hostage. My mother looked at the doctor and said, “Thank you for letting us know this information. When can we take him to the zoo?”
My wife and I looked at each other, and in such a solemn moment, we started to laugh. Through the entire conversation, my mom never stopped being a grandmother with her priorities firmly in place. Her grandson deserved to be taken on wild, madcapped adventures. Hemophilia was not allowed to stand in the way.
That was my mother, the one who refused to let illness or a diagnosis get in the way. I loved to watch her and my children play together. The boys spent afternoons with Granny in museums to malls to zoos. She was their escape to adventure.
My mother died almost seven years ago. A year after her passing, my eldest son showed me a cardboard box that Granny had given to him. On the front cover is a note; it reads: “My wonderful grandson, every time I thought of you today, I put a penny in this box.” We opened the box, and the container was filled with pennies. Later, my son took the box to college with him and kept it in a prominent position in his dorm room.
Today, I thank my mom for being a hero, for teaching me how to fight for the things I love and how to give my heart completely to those I hold dear. I hope I emulate the life lessons I learned from her, and in turn, continue to remind my boys that they are made of tough stuff, and that they are loved beyond all reason. I love you, Mom, and will share your strength with my boys. Thank you for being my hero!
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.