I’ll open this column with a riddle for you. Question: How can you tell you’re at a bleeding disorders conference? Answer: Beautiful business casual clothing and sensible shoes! I’ve had a love-hate relationship with shoes over my lifetime. From a very early age, my parents and pediatrician noticed my ankles…

Living with someone who has a chronic illness has taught me much about perspective — both my own and that of others. While being married to someone who has hemophilia and epilepsy, I’ve seen firsthand how people often show that they care based on what they believe they’d want…

Earlier this week, my youngest son, Caeleb, and I parked my car and walked to the financial aid office at the University of New Mexico, where he’s a freshman. As we walked, we talked about him registering for the spring semester. He expressed concern that he wouldn’t get into the…

“Let me see if I’m hearing you correctly: If I get the lip biopsy and it’s positive, it’ll confirm that I have Sjögren’s syndrome. If I get the lip biopsy and it’s negative, I likely still have Sjögren’s syndrome and the treatment plan I’m on won’t change either way?” The…

While the holiday season brings excitement, it also creates unique challenges for families like ours who are managing chronic conditions. My husband, Jared, has severe hemophilia B and epilepsy, and I have attention-deficit/hyperactivity disorder (ADHD). While common advice suggests taking it slow, setting strict boundaries, and skipping some…

One thing I noticed during my son Caeleb’s frequent hospitalizations was the need for his mother, Cazandra, and I to circle the wagons to protect him and his brother, Julian. We gave friends and family updates and quick calls, but during many holidays that we celebrated in the hospital,…

My wife, Cazandra, had complicated surgery last week that required her to spend some time in the hospital, followed by at least two weeks of inpatient rehabilitation. We were in shock, as we’d thought she would spend three days in a health facility and then finish her…

When my oldest son, Julian, was 5, our paths crossed in the medical world. My wife, Cazandra, was out of town, and my boy and I were holding down the fort at home. Julian had hemophilia with a low-titer inhibitor and thus needed to infuse factor VIII every day.

Preparing for major spinal surgery has me feeling more than the usual pre-op jitters. There’s something more profound at work — a feeling that connects me to the years of watching my son Caeleb endure numerous surgeries as a result of complications from severe hemophilia with an inhibitor. Because…

I’ve lately come to realize that pride and dignity are core values in my life, profoundly influencing my sense of self and my interactions with others. Although pride is sometimes seen as a negative trait, there’s a crucial distinction between healthy and unhealthy pride. The former allows us to feel…