What I’ve learned after a lifetime of listening to hemophilia stories
Our community's experiences differ, but all deserve to be heard
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For more than nine years, I’ve shared my experiences raising two sons with hemophilia through hundreds of columns, articles, and videos. Sept. 30 will be my last column, and these last few pieces capture what matters most to me. I’m excited for what comes next in my writing journey.
It’s important to make time for yourself. I’m not only talking about exercising or eating well, though those are good habits. Doing things you love helps balance out the stressful, tough, and everyday parts of life.
Spending time alone with an activity helps me relax and focus. Lately, I’ve found this in quilting.
A quilt starts with fabric. I love picking out patterns and colors that catch my eye. Making a quilt is my way of sharing love, joy, and excitement with friends or family for special occasions like birthdays, new babies, or retirements. This quiet activity helps me step away from stress and focus on what matters most.
When I sew, I notice that every thread is important. Each one represents an experience full of emotion. I bring feelings like joy, fear, loss, resilience, and hope into everything I make.
Working with fabric and thread reminds me that quilts aren’t the only things made from many pieces. Our lives are also woven together by our experiences, relationships, and stories. In the bleeding disorders community, everyone has a story that matters.
Watching a quilt come together is like seeing someone’s heart, with each thread and piece of fabric telling part of its story. But the thread is the most important part. Without it, a quilt would just be pieces of fabric left on the table. The threads connect, just as our shared experiences do.
Weaving together a tapestry of experiences
Telling our stories matters in the bleeding disorders community. From receiving a diagnosis to sending your child to daycare and school, to eventually helping them transition into adulthood, each milestone is full of emotion. You may feel excitement, doubt, and fear all at once. Over the past 30 years, I’ve learned how to help my children take their next steps.
Listening can be hard, but it is imperative. It’s more than just hearing someone’s story; it’s about refraining from sharing your own right away. Giving space to parents whose baby was just diagnosed with hemophilia lets them share their fears. It’s natural to want to say, “When my son was diagnosed …” but sometimes, it’s better to just listen.
Everyone living with hemophilia or caring for someone with a bleeding disorder has a story that deserves to be heard. Sharing our experiences can help, but listening without jumping in is also a way to show we care.
No story is more important than another. The different colors and patterns show how diverse we are. Some stories go in different directions, but together, they help us build a caring community. We need to make space for everyone to share their hearts and add their threads of despair, understanding, and acceptance.
With what we’ve learned, our experiences come together to make a beautiful tapestry. Sometimes it’s wild and bright; sometimes it’s calm and quiet. Together, they create something bigger than any one of us.
Listening to our community’s stories is a gift and a privilege. It’s something truly special.
Over the years, you, my readers, have let me be part of your stories. You’ve shared your celebrations, disappointments, fears, and hopes with me. Your stories have shaped my writing and changed me in ways I can’t fully put into words.
As I prepare to pen my last column, I remember that one thread doesn’t make a quilt. Its beauty comes from how all the pieces fit together. Our bleeding disorders community is the same. We each have our own path and burdens, and our lives may look different. But our stories can bring us connection, compassion, and hope.
I am entering a new chapter, but the stories will continue. Someone will always need to be heard, have a place to share their fears, and know they’re not alone.
Let’s keep making space for each other and listen with open hearts. And let’s always remember that every thread matters.
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 consult your physician or another qualified healthcare 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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