Juggling responsibilities while managing my sons’ hemophilia

Many times, I find myself overwhelmed by the weight of my responsibilities, particularly when it comes to managing issues related to my sons’ hemophilia. The stress from different directions can be paralyzing, and I often grapple with anxiety about how to handle everything at once. The burden of a bleeding disorder is heavy enough without the added pressures from other aspects of life, each vying for a piece of my soul.

Once, when my youngest son, Caeleb, was 6, he developed a breakthrough bleed in his right ankle. His ailment required immediate attention, and only the emergency room at the University of New Mexico Hospital could handle it.

As my wife, Cazandra, and I made plans to get our boy to the hospital, I received a phone call. Someone needed my immediate attention and required pastoral care. I couldn’t ask them to call back in 30 minutes, so for confidentiality’s sake, I drove separately from Cazandra and Caeleb so I could talk with the person privately in my own car.

That was just one instance of the constant juggling act I performed, trying to balance my personal and professional responsibilities.

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At first, I struggled to concentrate on the person on the other end of the line, but eventually, I succeeded in focusing on both the road and the person talking. As I listened for wording, phrasing, and other cues, my attention zeroed in on the person with whom I spoke. I acknowledged their hurt and remained an empathic listener, gently guiding them as they sought comfort. Fortunately, the conversation came to a logical conclusion as I neared the hospital.

For a moment, I took pride in assisting a person through a difficult time. Then I opened the door and braced myself for another kind of worry.

Caeleb’s pain proved horrible, and as he wailed at the top of his lungs, I tried to calm him down by singing a familiar song, “For Baby (For Bobbie).” I held him in my arms and rocked him back and forth. The sound of my voice appeared to work, and his cries subsided to a whimper. A nurse came into his hospital room, administered a pain reliever, and infused him with NovoSeven RT (eptacog alfa). Within minutes, my brave boy was asleep.

No sooner had I walked out of the room than my phone rang. A member of my extended family had gotten ill and asked to speak to me, the pastor. It was my grandmother’s brother, the man who took me to get my first haircut. I answered, a little reluctant to remain on duty. I needed a break to breathe.

I greeted my great-uncle as usual: “Hello, Uncle Jimmy. How are you doing?” The internal conflict I felt was palpable, torn between my need for a break and my duty to my family.

Immediately, I regretted how I’d started the conversation. My great-uncle Jimmy said, “Hello, Joe Keith.” (That is what he called me.) “I am very sick, and my doctor thinks I have less than two weeks to live. I have a big favor to ask of you. Will you be the presiding pastor at my funeral?”

His request took me aback. I thought of my many memories with him and considered it an honor that he’d called me. Once again, my energy moved from hemophilia and Caeleb to another immediate need that I couldn’t turn down.

I replied, “Uncle Jimmy, I am honored to be your pastor through this difficult time.” I told him that I’d travel to Houston in a couple days to talk to him about the end-of-life issues he faced. I told him I loved him and would see him soon.

Finding joy and purpose

While I often find myself weary from managing all my roles, each appeal allows me to meet the needs of my closest friends and family. It’s crucial to remember that there’s a time to rest, and I must prioritize my own well-being before helping others. Self-care isn’t just a luxury, but a necessity for my physical and mental health. Embracing opportunities to care for others gives me a deep sense of purpose, a feeling that’s reserved for moments of holy listening.

Strangely, I draw strength from the various roles I play in life. Being a husband, father, great-nephew, friend, pastor, and hemophilia advocate energizes my soul. Yes, I may get overwhelmed when juggling these different responsibilities, but the joy of helping others is a powerful motivator. It’s not just about managing multiple roles, but finding a purpose in each. This purpose keeps me moving upward and onward, one solution at a time.

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.