The other day, I ran across a tiny, plastic bag that contained a blue bead representing a clinic visit. My son Caeleb was part of the Beads of Courage program at the University of New Mexico Children’s Hospital. The program uses glass beads donated by artists to help…

Last weekend, I had an experience I had long dreamed about. This experience had been on my list of “things to achieve” for several years since I met my husband, Jared, who lives with hemophilia. Many women my age dream of treating themselves to a huge shopping…

Recently, I discussed an issue with several men with whom I meet on Monday mornings. We talk about various topics, and that morning’s conversation centered around the idea of forgiveness. For a healthier life, we must let go of resentments and embrace change. Only through surrendering our pain can…

My adult son is 22 and living at home. He will be moving to a neighboring city next month and will go back to college in the fall. He was recently hired at a coffee shop and has been commuting the 90 miles one way about four days…

Dear Chronically Ill Partner, I know life isn’t always easy for you. You have grown up believing life dealt you a terrible deck of cards. You’re no stranger to the feeling of suffering. At one point or another, you’ve even questioned the motives of the universe in…

A few years ago, “MacDonald the Younger,” his mom, and I went to his yearly checkup with the Hemophilia Treatment Center to review our road map (healthcare chart), report on activities, and make sure that he was taking the correct dose of product for his height and…

It’s easy to distance yourself from the issues of a bleeding disorder when everything is going well. My youngest son, Caeleb, has not been in the hospital for an overnight stay in several years, and the pain he would endure from repeated bleeds is a distant memory. He…

February 2014 was a significant time in the life of my family. For years we saw our younger son regularly suffer bleed after bleed. He suffered from an inhibitor and an allergy to factor. Nothing seemed to help. We felt lost and unsure about how to continue seeking…

My wife and I learned early to be careful when discussing the struggles we share in caregiving. Sometimes we get tired and want to complain, but we must remember that our children hear and see us. If we say something in total frustration, our children might blame themselves…

The unimaginable has happened. My youngest son, Caeleb, had his port removed. Of course, when someone with a bleeding disorder has a port, it’s usually not forever, so why is it a big deal for my 13-year-old son? This was his seventh port. He has had…