Living with hemophilia and a 4-letter word: Hope

In my five-plus years of writing columns for Hemophilia News Today, I’ve missed two weeks. Many times, I feel that I’m repeating myself as I struggle to write something that matters to the bleeding disorders community. I share daily experiences as I navigate bad and good moments with my sons, who live with hemophilia. I pray that one sentence may strike a chord with those struggling to care for a loved one with a chronic illness.

Eventually, one common thread weaves itself through the many stories I share. My life is a living testimony to the power of hope as my boys overcame many difficulties with their internal joint bleeds. I aim to speak to parents of the newly diagnosed with hemophilia, who may be paralyzed with fear as they try to make sense of the unexpected news. I want caregivers to find a glimmer of hope to reclaim some degree of control when times are tough.

The promise of hope is always the foundation of the stories I share. My family has never faced a situation where hope is not the underlying element of my thoughts. Dark moments may overwhelm me, but I refuse to surrender to negative feelings. Hope picks me up and moves me forward. It gives me the strength to face whatever issues arise from hemophilia when raising my boys.

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During one tough season in the life of my youngest son, Caeleb, hope proved vital to maintaining sanity. He suffered through a joint bleed that continued for two weeks. None of the medication we infused helped stop the continuous flow of blood into his right knee. While he struggled with horrible pain, I noticed his right knee was bent at a 90 degree angle and wouldn’t fully extend.

The bleeding stopped eventually, but Caeleb needed months to regain mobility. During that time, when Caeleb depended on a wheelchair to move through the world, the only thing I could offer my boy was a sign of hope. I wanted to assure him that his health would improve and that his inability to walk was temporary. Through my words, I tried to infuse my son with a message of promise to boost his spirits. My example of hopeful living could prove a vehicle for learning as he made his way through the world.

Over time, I’ve learned that hope is not about a desired outcome, but a way of life. It’s a choice I make daily. When confronted with difficult hemophilia-related issues, I surrender my fears to an approach that brings comfort and peace. Hope guides the thoughts and processes we caregivers live by, and what we offer to loved ones struggling with the chaos of bleeding disorders.

Alexander Pope — an Englishman and one of the most prolific poets of the Enlightenment — coined the phrase “Hope springs eternal.” His premise suggests that the desire for hope lies at the very foundation of humankind and is a core belief. For that reason, humanity survives by finding meaning and feeling that we can rise above our circumstances, become raised out of the darkness. The hard part is finding a way to embrace the hope within each of us.

For my family, I want to instill in them that a bad choice or a horrible situation is not the final destination. Tough times prove only a stopping point as we journey through life. We don’t know what lies before us. We remain assured that the next day offers promises beyond what we now know.

I encourage my sons to take one step at a time into the unknown because somewhere out there, joy can make its presence known. I tell my mighty boys to walk with their heads held high. Tomorrow promises to be a brighter day.

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.