“I don’t see blood, so you must not be bleeding.” For people with bleeding disorders, that kind of thinking isn’t just frustrating; it can be dangerous. Bleeding isn’t always visible or dramatic. It doesn’t always look like blood pouring from a wound or a bruise that appears immediately. For…
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One thing that moves me is watching my sons find pockets of time when their bleeding disorder doesn’t take center stage in their lives. During these periods of freedom, time seems to suspend itself for a moment, and Julian and Caeleb are able to live their best lives without worrying…
Packing my lunch is necessary because my schedule as a hospice chaplain can change quickly. I keep food and drinks in an ice chest in my car because it can get hot here in New Mexico. When I get a call to see a patient whose passing is imminent, time…
Before I ever met my husband, Jared, he had learned to adapt well to having severe hemophilia B and seizures. But one moment from his childhood still finds its way back to him. On the first day of fifth grade, his teacher told the class there would be a…
I just returned from the Hemophilia Federation of America (HFA) Symposium in New Orleans, and like many gatherings in the bleeding disorders community, it left me inspired, reflective, and deeply grateful. This was my first HFA Symposium, and I’m truly grateful to the organization for including me. There’s something…
Last Friday, my wife, Cazandra, and I drove to Albuquerque from our home in Las Cruces, New Mexico, for doctor visits and other personal business. One of the best parts of the trip was taking our youngest son, Caeleb, to lunch. I know he’s 20, but sometimes I have to…
Watching gymnasts Nadia Comaneci and Olga Korbut in the 1976 Olympic Games inspired me to do front rolls in my backyard. I knew back flips and aerial twirls weren’t in my reach, so I set my sights on mastering the cartwheel. But it was never to…
I struggle when I lie down to sleep, and my legs hurt so much that I need to move them. I don’t get a good night’s sleep, and when I awake in the morning, my brain is foggy and I feel like I’m moving around in a bubble. I am…
Sleep has always been a troublesome subject for me. Even as a child, it felt optional — something I could push aside in favor of thoughts, ideas, or whatever held my attention in the moment. In high school, that tendency only intensified. Sleep became negotiable, almost expendable, as if I…
There are moments when I’m reminded just how much I depend on something most people rarely think about. I live with von Willebrand disease, and my treatment depends on Humate-P (antihemophilic factor/von Willebrand factor complex [human]), a plasma-derived therapy. This medication is more than just a vial;…
