My family is enjoying a respite from complications of hemophilia

Recently, my wife, Cazandra, and I entered an extraordinary time — when our adult sons are enjoying a period of peace with their bleeding disorders. Several months passed, and the only health issues that came into focus were dental surgery for Julian, our oldest, and some minor discomfort for Caeleb, our youngest.

Hemophilia has moved to the back burner in our family, granting us newfound freedom from constant worry. Gone are the days and nights we worried about Julian, who experienced some hemophilia complications last summer while performing at a theater in North Carolina. Many months have passed since Caeleb’s pain proved so intense he couldn’t get out of bed. Although he feels some aches and pains in his right knee and ankle — his target joints, as they’re known in the hemophilia world — my son manages to get up and attend his college courses at the University of New Mexico.

But I must admit that a part of me feels a little nervous.

Please don’t get me wrong — I’m grateful for a break from needles and frequent hospitalizations. My worry is how long we might continue to enjoy this freedom from internal bleeds and frequent pain. When will our respite come to an end? I’m still worried about when, not if, something might happen. How difficult will the next complication be for one of my sons?

Recommended Reading

February 7, 2025 News by Katherine Poinsatte, PhD

‘Problem joints’ linked to worse clinical outcomes in hemophilia A

Trying to enjoy the present moment

I caught myself in my thoughts and attempted to calm down. I focused on my heartbeat and tried to silence the fear that seemed to grab my soul and not let go. Struggling to find a safe place, I sat silently and listened to my breath. Putting one hand on my chest and the other over my heart, I concentrated on my heartbeat and tried to take deep breaths. Taking a few minutes to myself seemed to help with my anxiety, as both my heart rate and breathing slowed down.

Once I’d calmed down, I sat in prayer and verbalized my concerns. I admitted that fear grabbed me when I should’ve felt grateful. After a few moments of quiet, the truth hit me like a ton of bricks: What I felt was trauma.

My body naturally responded with fear because that’s what I’ve known. Julian staying in a remote part of the North Carolina mountains gave me great anxiety, and I always worry about Caeleb’s target joints when I check on him before school. I was waiting for the ax to fall yet again.

A still, small voice filled my soul and reminded me that there are good times and bad ones. My family has a chance to let go of fear, even briefly, and enjoy moments without the chaos of mental and physical struggles reigning supreme. We appreciate what we have now because it can change on a dime. We know ups and downs come and go when living with hemophilia or other chronic illnesses.

I left my quiet time with a new sense of purpose to enjoy this period of rest with my family. We’re finding ways to bond with one another during our sabbatical. Julian sang a concert at our church and is preparing for auditions in Baltimore next month. Caeleb continues to attend his college classes, and while he prefers some subjects over others, he’s committed to doing the best he can in school.

We have no idea how long our respite might last, but we know that our relationships with one another will continue to deepen in wonderful and interesting ways. The key is letting go of the fear of “what if?” Worry and panic get us nowhere, but remaining close and providing one another with love and support can help keep us grounded. I hope to live in the moment and not worry about what might be.

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.