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I don’t get headaches often, but when I do, I absolutely hate them. They can be particularly worrisome for a person with hemophilia. Because I am not prone to headaches, it is a bit disconcerting when I get one. Having hemophilia A means I am often worried about…

I rarely participate in support groups on social media because some interactions leave me feeling more emotionally drained than supported. To be clear, there are genuinely kind and generous people in these communities. Many families have found lifesaving information, financial assistance, practical advice, and emotional solidarity through them. In…

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…

I have medical records from my old hemophilia treatment center in Wisconsin dating back to the 1990s. Over the years, those old documents have turned out to be some of the most powerful tools in my healthcare journey. I was diagnosed in the ’90s with a rare…

I picked my youngest son, Caeleb, up from the University of New Mexico in Albuquerque last week, and we started unpacking the car the minute we arrived home, his bike, electric wheelchair, walking stick, and everything else forming a pile in the garage. “Look, Dad,” he said. “This stuff is…

When I was in the fifth grade, I’d look in the mirror every morning and hate who I saw. I believed I was ugly, unpopular, and weird, and the hand-me-down clothes I wore made me look different. I’d say horrible things to myself, like, “You really are a dog.” I…

Lately, I’ve been seeing a trend on social media where people ask artificial intelligence (AI) tools to write them a letter. Usually, the prompts are deeply personal. People ask for letters from their future selves, their inner child, or versions of themselves they feel disconnected from after grief, burnout, heartbreak,…

There are events I know I should attend but talk myself out of. The Bleeding Disorders Foundation of Florida’s special Ladies Tea Luncheon has often been one of them. It’s not because it isn’t worthwhile — it absolutely is — but because getting to Tampa from where I live…

My oldest son, Julian, has one life goal in mind: to make it to Broadway. From his earliest years, my boy would sing for anybody who would listen to him. While we share a love of music, I admit that he can sing so much better than I ever dreamed.

I never thought my life would be like this, but as a mother, I had no choice but to be strong for my children. As a mother of two sons with severe hemophilia A, Lean Archer and Lukas, my world has been shaped by fear, vigilance, and unconditional love.