Being present is the best way to support others in times of waiting

I spend a lot of time in the hospital, but not for the reasons most people think. As a hospice chaplain, I sit with patients who are nearing the end of life. It is a privilege to be with their families and friends as they prepare to say goodbye.

The beeping of monitors, the smell of antiseptic, and the squeak of gurney wheels in the hallways are familiar and strangely comforting. These sounds and smells take me back to when my sons were in the hospital.

Both of my sons, Julian, 29, and Caeleb, 20, have severe hemophilia A. Caeleb also has an inhibitor. They both needed ports at various points to infuse clotting factor and prevent internal joint bleeds. While Julian’s port stayed in for five years without any problems, Caeleb’s experience was much harder.

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Because of his hemophilia, Caeleb often spent weeks in the hospital and underwent many surgeries. He had seven ports in all. Some got infected, one cracked, and another even came out of his body.

Each new one meant another surgery. For someone with hemophilia, no surgery is ever simple. Even small procedures require careful planning and extra caution. Before each surgery, we met with a hematologist to set up an infusion schedule, do lab tests, and make plans in case the bleeding lasted longer than expected.

Then the fear would set in. For me, it manifested as a series of “what-ifs.” What if there is unexpected bleeding? What if the factor doesn’t work as planned? What if something goes wrong?

Then the hardest part came: waiting. Waiting for surgery to begin. Waiting during the procedure. Waiting for the doctor to walk through the doors and find me in the waiting room.

I have been through this process too many times.

The importance of presence

Not long ago, I found myself trying to comfort a friend whose child was preparing to undergo surgery. I told her everything would be OK and that I understood what she was going through. I reassured her that her child was young and strong and would recover well.

But that was my experience, not hers. She needed to face her own “what-ifs” and wait in her own way. I felt like I made her experience seem smaller.

I realize now that what helped me most when preparing for my sons to have surgery was not having someone try to alleviate my fear or promise that everything would be fine. What helped me was someone willing to sit with me in the uncertainty. Someone who knew that courage is not the absence of fear, but the choice to keep going anyway.

Every day, I see families waiting to say goodbye to someone they love. Waiting for a loved one to die and waiting for one to come out of surgery are quite different. However, the feelings are the same: fear, exhaustion, grief, and a deep wish for certainty when there is none.

Perhaps the biggest lesson I learned from all those years in hospitals is that being present matters more than saying the perfect thing. We don’t need to rush people through their fear or try to explain away their pain.

Sometimes the best thing we can do is simply listen and stay with them while they wait.

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.