I find myself stranded today. I had traveled from Texas to Denver for a week of classes before jetting off to Vermont for a speaking engagement. Before my arrival in Vermont, my return flight to Denver was canceled. What’s a girl to do?
Having spoken at the New England Hemophilia Association’s Couple’s Retreat, I was “forced” to stay an extra day because of a flight crew issue. If I had to be stuck somewhere, there are worse places to spend time than at the Trapp Family Lodge.
I know that not everyone will appreciate what I am about to admit: Hemophilia has brought amazing opportunities into my life. I spent time this morning with families who have young children with hemophilia. I saw the fear and doubt in their eyes as we talked about loss and the end of their dreams for their children to lead a life without limits or a medical condition. Now their possibilities carry some restrictions. The mothers’ tears sparked memories of how I felt many years ago in the early days after my sons’ diagnoses.
I listened to a young man talk about his life with hemophilia as a 30-something. His words gave hope to young parents who heard him say, “Your kids will be OK.” That is what they needed to hear. That is what I wanted to know back then.
I have been given a gift through hemophilia to share hope and encouragement with others who are living with a bleeding disorder. This gift has taken me across the country to meet amazing people who embody resilience. Don’t get me wrong — if I could have taken away the pain and suffering that hemophilia has inflicted on my sons, I would have. However, through our struggles, pain, and tears, my family has grown in a way I never could have imagined. We speak up for what is right, advocate when something is wrong, and share our hope when we can. I am incredibly grateful for this.
I am spending a day in Vermont reflecting on the incredible opportunities hemophilia has given me over the years. While each trip is a sacrifice of time away from my family, I believe I am obliged to spread hope and encouragement. It’s funny how a calling through a chronic illness can change your life.
I give thanks to the hundreds of people I have spoken with over the years for sharing their stories with me. Each one has changed me. Their stories of courage have given me the strength to move forward during the toughest times.
I look forward to many more stories.
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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