It is hard for some of the people in my community to understand why my son Caeleb struggles when he walks. Many see him as a normal 14-year-old boy who towers over me and is as goofy as the next kid. But they didn’t see him when he needed…

I walked into my home and heard my oldest son, Julian, having a heated conversation over the phone. He hung up and threw his phone down in absolute frustration. “What’s wrong?” I asked. He said, “How did you and Mom navigate hemophilia treatment with our health insurance company?…

I am a believer in the benefits of summer camp — hemophilia camp to be specific. Children with bleeding disorders across the U.S. have the opportunity to spend time away from home and participate in activities they may not usually experience. Hemophilia camp is a place where kids can…

I often get caught up thinking about things I did not do for my sons, who have hemophilia. I worry about the many deficiencies I have, and how they affect my sons’ lives. Dealing with a bleeding disorder is more than enough to worry about, but do they feel…

Not all medical visits are created equal. Sadly, or perhaps horrifyingly, some women must fight to get access to the most basic of care, while others are fortunate enough to access it easily. While this is reality, it is not OK. It is imperative for the health of…

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…

Last week in Tampa, Florida, I attended the CHES Foundation’s One Drop consortium, the largest national conference dedicated exclusively to people living with ultra-rare bleeding disorders. The program focuses on conditions that often lack the resources, research attention, and community networks that are available to those with more common…

As a hospice chaplain, I offer space for people to speak. I meet them where they are as they grieve. From patients who need to reveal their regrets and disappointments to family members wracked with guilt, I am present and give them space. No judgment. Sometimes it’s difficult not…

My mighty warrior Caeleb is only 11 and has had six ports. One cracked, another became infected, one literally worked its way out of his body. You get the picture. But when you are infusing daily for immune tolerance, daily peripheral sticks are not always possible. For the…

Parenting is not easy. And when you have a child with a rare bleeding disorder such as hemophilia, it is exponentially more difficult. Not only are you dealing with the typical ear infection, cough, or broken wrist, you also must consider how hemophilia plays into the mix. My youngest son,…