My family entered the hemophilia community more than 23 years ago with the birth of my oldest son. During our time with the bleeding disorders community, my wife and I learned to access ports, treat and perform peripheral sticks, and negotiate difficult circumstances. We did not receive a manual titled “How to raise a child with a chronic bleeding disorder.” I don’t think such a booklet exists.
We have learned a few life lessons. While the following is not an exhaustive list, it does include the most important things from our journey.
Each child’s treatment is unique
Both of my boys are factor VIII deficient, but their treatment is as different as night and day. One never experienced a joint bleed, while the other faced continuous hospitalizations due to chronic bleeds into the right ankle and knee. Each child required our attention in different ways.
The only commonality between my stinky boys centered on our roles as caregivers. We learned to address their diverse needs by offering them love and guidance. The ability to remain present and verify another life is one of the essential tasks that we face as humans.
Love and support are key in every circumstance
No matter how great the pain or experience, children need to know that someone is always in their corner. We do anything we can to stop the pain of a chronic bleeding episode. We tell jokes, play video games, and build Legos — anything to take the focus off the awful throbbing of a horrible bleed. We sit together to comfort our mighty men during the most difficult of circumstances. We remind them that they are not alone, and we will weather the storm of pain together.
Community is crucial for learning and support
Something happened to me when I met other families struggling with bleeding disorders. I felt like I could breathe again. I found hope through the stories of my new friends. My son could live a good life, and hemophilia — while still an unwelcome guest — could prove manageable.
The people we met as newbies in the bleeding disorders community hold a special place in our hearts. They continue to support and love us in good and bad times. We know that we stand strong when we are together. We found our tribe, and we stay connected to its life-giving energy.
We attend national conferences to stay in contact with friends and to remain up to date with the newest and best treatment plans. We build relationships with people who affect the medical and spiritual care of those we love. We learn vital information from the leading doctors and researchers in the field. I keep my saw sharp by attending meetings across the country.
We are more powerful than we could imagine
In our family, hemophilia came out of the blue, and I wondered whether my family would make it in a world filled with chronic illness. Luckily, my wife and I are a great team. The diagnosis did not weaken us; it made us stronger. Our mission became clear: empower our children and ourselves with knowledge so that we can fight hemophilia with everything at our disposal. In the middle of our research, we found commonality that sustains us.
These are some of the lessons we learned while managing a chronic illness. I am sure we will discover more in the future. We are grateful for those who helped us open our eyes to the power of sharing stories.
Here’s to us, the entire community. May we all continue to prosper and grow in our service to one another!
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.