Love shows up to navigate hemophilia, distance, and family bonds

As a chaplain, I am privileged to stand at the bedside of someone who is dying. Often, few words are exchanged. I know it is my presence there that matters most.

When people learn that I work in hospice, they often say, “Oh, my goodness, that must be hard work. Thank you so much for what you do. My mom was in hospice, and it was such a blessing. How do you do it?”

I usually tell them this work is a calling that, at this point in my life, I am grateful I heeded. My work is as much a blessing to me as it is to others. I don’t need to be thanked — the presence and feelings in the room, or even on the phone, are thanks enough.

Being called is often equated with religion. But I believe that everything can be a calling and that everyone has a calling. Whether it’s becoming a teacher, an engineer, or choosing to work in retail, a calling is something we listen for and, if we are lucky, we answer. If we are fortunate, we find a place in the world where we are fulfilled in our work and our calling is answered.

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Called to walk beside

A calling can also show up in our family relationships. I am the mother of two sons with severe hemophilia, and it has brought me the greatest joy. Recently, I was reminded in a special way how close family can be.

My 20-year-old son, Caeleb, is a college sophomore. He rides a bike on campus and loves the freedom of biking everywhere. He has two painful target joints, and walking long distances is difficult, so biking is a perfect mode of transportation.

But last week, he had an accident on his bike. I’m three hours away and couldn’t get to him, even though my mom instinct wanted to. He told me his bike was fine, but his arm and leg hurt. He made it back to his room and took Tylenol. He said he didn’t think he was having a bleed, but I encouraged him to visit the campus clinic.

Two days later, he called to say he hadn’t gone to the clinic, and his pain had gotten worse. He had fractured his wrist before and was worried he might have broken a bone. He called a hemophilia treatment center and was told to go to the emergency room.

I was worried about Caeleb handling the visit by himself, so his older brother, Julian, 29, said he would look after him and help him through it. I was so grateful he could be there. I could hear the relief in Caeleb’s voice when I told him Julian was on his way. I thanked Julian and told him how relieved I was, too.

“Of course, I’m going to help him,” Julian said. “He’s my little brother.”

Because there’s a big age gap between Caeleb and Julian, they didn’t become close until Caeleb was in high school. I used to worry the age difference would always come between them, but over the past few years, I’ve seen them joke around with each other and fill our home with laughter and silliness. It truly warms my heart.

Caeleb finished his hospital visit on his own and sounded proud of how he handled everything. He told me he was grateful for Julian.

Not everyone is close to their family, but when you do have a strong bond, it truly enriches your life. Knowing my sons are close to each other fills me with deep gratitude. Jumping in to help his brother, Julian answered his own calling, not with words, but with presence. Just as I am called to walk beside the dying, he was called to walk beside his brother.

In both places, love shows up.

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.