I am originally from Texas, so I know the meaning of the word “team.” The Lone Star State reveres sports organizations like no other place in the country. Friday nights in the fall are overwhelmed with football, marching bands, and great times to visit with friends. Everyone gathers together with one goal in mind: to cheer their respective teams to victory.
Living with a bleeding disorder is very similar to working together to win a game. Members of a family gather together to provide care for those who live with hemophilia. Meticulous planning is involved to ensure that everyone in the house feels safe and understood. One person must inventory medical supplies and medicine, while another must infuse. The team is precise and knows the needs of the person living with a bleeding disorder.
My family is a great team. My wife and I understand one another’s strengths and weaknesses very well. We have years of practice underneath our belts. Leaning on each other, we know when we need to switch roles, or even take a break. We agree that the definition of any good team involves respect and understanding. Being on the same path allows our home to smoothly function so everyone can seek their way of living in the world.
Our team extends beyond the home. The medical team that cares for both of our sons works with us to provide the best care possible. One of the many times that my youngest boy recovered from a horrible bleeding episode, we were at our wit’s end. His bleeding could not get under control, and he faced another extended hospital stay. A hemophilia care physician, Dr. Winter, came in and sat with us. He suggested that we develop a road map, so we all knew each other’s needs. Equipped with as much information as possible, the “MacDonald Team” worked together to provide my “stinky boy” some relief. He has not been in the hospital for a joint bleed since February 2014. It all started with a road map and a good team effort.
It all starts with intentionality. It is up to us to provide the best care made available. When there are times that the end does not appear to be in sight, it is up to us as advocates for our children to find new and innovative paths toward solutions. Quality care requires working together so that our children suffer as few bleeding episodes as possible. In times when the pain from bleeds becomes unmanageable, we as caregivers hold a hand to assure that the hurt will pass, and we will move forward.
And now, a Paul Harvey moment: I spoke about the doctor who suggested we create a road map regarding my son’s care. Dr. Winter enjoys wearing bow ties. Every time we saw him, he wore different and unique bow ties, all kinds and colors. The fantastic doctor successfully applied for a Fulbright Scholarship and traveled to assist in the research I could never hope to understand. While he lived in Paris, we sent him a tie, complete with a map of some part of the United States. “Dr. Winter, thank you for making our team better simply for knowing you.”
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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