It’s important to find moments of joy amid the darkness of hemophilia
We must acknowledge both the obstacle and the victory
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Most of the writing I see about mental health suggests that addressing the obstacles in your way is crucial to discovering joy. While it’s important to discuss the challenges we face in the bleeding disorders community, we must also remember to celebrate and give thanks when we conquer a mountain. To acknowledge both the darkness of an internal bleed and the victory of managing it.
My oldest son, Julian, is 29 and lives with hemophilia A, which can be treated with clotting factor VIII. When he was 2, he was diagnosed with an inhibitor, meaning his immune system identified the infused clotting factor as a threat and neutralized it before it could help control his bleeding.
My wife, Cazandra, and I did not know what to expect with the inhibitor. We were scared about possible complications, but fortunately, Julian didn’t experience any. I give thanks to the Gulf States Hemophilia and Thrombophilia Center for helping us treat and eventually eradicate Julian’s inhibitor.
I also give thanks for my wife and her commitment to our family. After Julian’s diagnosis, she asked the right questions and sought out experts in the field. Our common enemy, hemophilia, brought us closer together as a family.
During this period, we also developed our first ties to the bleeding disorders community. We learned from those who came before us, and their wisdom gave us hope. Although our paths went in different directions, Cazandra and I have always thought of our original group as a refuge.
Navigating more obstacles to joy
My joy was tested again when my younger son, Caeleb, 20, began having recurring bleeds in his right knee and ankle at the age of 6. He also developed an inhibitor, but his immune system destroyed the clotting factor much faster than Julian’s did.
We didn’t know what to do. Caeleb would be in the hospital for weeks, sometimes months, at a time. Cazandra and I were like two ships in the night as we took turns staying with Caeleb in the hospital. I often felt like I was living in a nightmare.
One night, I stood by my boy’s hospital bed as he screamed in pain. I started humming a song, which calmed him for a bit and distracted him from the pain. I felt grateful that the tune’s soothing melody had provided a safe space to land.
During those difficult years with Caeleb, we found gratitude in a nurse’s kind words, in friends’ actions, in the hope that never stops speaking, even when we remain silent. The truth is, there are little pockets of joy everywhere. Our goal is to seek out those special moments when we face adversity. Gratitude sometimes feels distant, as if we must climb over an erupting volcano before we experience any relief.
Both of my sons are now men. Their transition into adulthood proved a little tricky at first, but I appreciate how they’ve learned to handle the responsibilities of living with hemophilia. Their attention to medical needs makes me smile, because I know that Cazandra and I taught them everything we could. Sometimes I look at her and say, “Thank you for being an amazing wife and mother.” For all these things, I am most grateful.
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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