Reflecting on the power of hope as we enter a new year
Finding light amid darkness helps my family cope with hemophilia
As we begin a new year, I can’t help but feel the power of hope permeate the air as conversations turn to new opportunities. Those of us in the bleeding disorders community long for new treatments that offer possibilities for a better quality of life. We pray that the issues we struggled with last year become a faint memory as we cast our eyes on a future filled with hope for a better tomorrow. The energy associated with a new beginning empowers us to chart new territory and explore our potential.
For my family, a benchmark year came in 2013. The previous year had proved challenging, as my youngest son, Caeleb, faced multiple hospitalizations because of internal bleeding episodes. At the time, he was only 7, but he’d already had 14 surgeries and numerous bouts of horrible pain in his right knee and ankle. He couldn’t catch a break, and my family prayed in December 2012 that we might find a respite from the horrible storm of pain in the new year. Looking forward to better days gave us the strength to ride out the storm of medical complications associated with hemophilia and inhibitors.
As 2012 gave way to 2013, I promised myself that I would provide the hope and strength my family needed to face the rough days ahead of us. By February, the medical team in charge of my son’s care found a way to stop the continuous bleeding episodes, and life regained a sense of normalcy. We still accessed our son’s port-a-cath daily, but we did so at home. Caeleb returned to school and enjoyed time with his friends.
As spring turned into summer, I thought back to the days in the hospital. I recounted the many times that we felt overwhelmed and unsure how to proceed. It was as if, with each bleeding episode, our souls had died a little. I thought of my faith, which teaches that no matter how dark things may be, there is always light to guide us. For my family, the darkness seemed to surround us. Finding small pockets of light, which I call hope, gave us the strength to move forward until we walked into the bright room of joy.
Continuing the journey
Although my family faced many more obstacles over the years, we learned a crucial life lesson: To move out of despair, we had to embrace hope. We began to look beyond our circumstances and set our sights on the future. Optimism must replace defeat for us to continue our journey. The way forward may sometimes appear rocky and impossible to maneuver, but with each step, we discover that we possess the strength to make it through the most demanding situations.
As 2024 begins, I encourage all to rely on the power of hope. Together, we can discern paths that lead to joy and strength. The most important thing is that we continue the journey.
Caeleb is now almost 18 years old and still remembers the difficult days of 2012. Recently, we had a conversation about the months when he couldn’t walk, along with the pain that he endured in the hospital. He said, “Dad, I can’t believe we survived that horrible year.”
I looked at him and acknowledged the difficulty he faced. I told him that the only thing that kept me moving forward was hope. “If I hadn’t focused on searching for a way to help you, I would not have made it through that season of heartache,” I said. “I love you, son, and will never give up the hope that as we continue through life, you will see miraculous changes in the treatment of hemophilia.”
He looked at me and smiled, acknowledging the power of hope to transform us.
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, and are intended to spark discussion about issues pertaining to hemophilia.