Emotional well-being is a mighty weapon against hemophilia
In our house, our son Caeleb is known as 'the mighty warrior'
Two common themes that appear in my columns are conflict and reconciliation.
Once a problem has been resolved and I can reflect on it, I look for insights about how to face the struggles of living with hemophilia. Taking the time to do this has resulted in a change in how I view emotional well-being, and I’m able to approach life better than I did before I began writing this column.
Those of us in the bleeding disorders community are familiar with enduring prolonged periods of chaos. We face daunting medical procedures and financial strain, all while trying to maintain our composure amid an unending cycle that seems to offer no respite. In addition to the challenges posed by bleeding episodes, we navigate unforeseen complications from managing chronic pain and joint damage to the emotional toll of frequent hospital visits. We fear that our lives may never return to “normal,” even as we embrace the mantra, “Life changes, and we must learn to play the hand the dealer deals us.”
Refusing the darkness
Still, even as we adapt to change, we recognize the victories we have won, those times when, through our strength and determination, we conquered obstacles that had seemed insurmountable. Being able to do this fosters a profound sense of hope and optimism that we won’t be overcome by the darkness.
My younger son, Caeleb, seems to possess superhuman emotional strength. What amazes me is how he finds ways to care for his mental health, even in the worst of times. There are days when I know he feels overwhelmed by a bleeding episode. Still, he manages to reach for strategies such as mindfulness, seeking support from loved ones, or maintaining a positive outlook to get him through difficult times. He is known as “Caeleb, the mighty warrior” in our family!
Here is an example of his strength, one I’ve mentioned before. Once, when I was trying to access his port-a-cath, he writhed and screamed, making the infusion difficult. I said to him, “OK, buddy. I will not try to stick the needle into the port-a-cath until I see your hand sticking straight up to the ceiling.” After a while, Caeleb’s thumb seemed to reach the sky. I infused him without a single cry or movement. I discovered that when I gave my son room to participate in the process, he recognized his strength and wrestled back control over his body.
As a parent, my job is to equip my loved ones so they can discover the strength that lies within them. Emotional well-being must always be the goal, and offering strategies to grow emotionally and spiritually empowers those I care for to stand on their own two feet. By recognizing our own inner strength, we can develop wholeness of heart, soul, and mind.
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.
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