A friend called to tell me her teenage daughter finally received a diagnosis of mild hemophilia. Her daughter experiences bleeding complications and had been seeking a diagnosis for more than two years. While it is a relief to have one, it is another story to figure out what the…

My youngest son, Caeleb, is a sophomore in high school. He lives with severe hemophilia A, along with the complication of antibodies that inhibit the infused factor’s ability to stop bleeding episodes, and chronic pain is proving to be a significant issue for him. Caeleb’s right knee and ankle…

Winter is one of my favorite seasons. I enjoy the crispness in the air and wearing sweatshirts and warm, fuzzy socks by the fireplace. My son Caeleb enjoys the same things about winter, but his hemophilia and chronic pain complicate his relationship with the season. The morning is the most…

My adult son, Julian, came home for Thanksgiving. When he walked into the house, I sensed that something was wrong. First, he told me he was in the early stage of a bleed in his leg. He then told me he left his factor at his home, five hours…

My son, Caeleb, recently had his first appointment with a new dentist following our recent move, which led to our first experience with an old concern: post-traumatic stress disorder (PTSD). Caeleb, 15, has had a fear of needles for many years, and as part of his hemophilia…

Julian was only a baby when he received his hemophilia diagnosis, and it came as a big shock to me. I remember how much I enjoyed the newness of having a beautiful son who looked perfect. Then, the first bruise appeared. Julian has severe hemophilia A, also known as…

I am an advocate, born and bred. Being an advocate is simply part of my DNA. Even when I was a young girl, seeing someone be mistreated or experience prejudice angered me. The years have taught me how to fight my battles and fight for others, but when my first…

I love a good laugh. When things are terrible and the world seems to be imploding, a well-timed joke or story can completely change the direction of the day. I am grateful to live in a home that is filled with love and laughter. I can count on…

I live with depression, anxiety, and chronic pain, and I rely on talk therapy at least once a month to keep my emotional well-being in check. The process of talking through my emotions and trusting a professional to give me new perspectives on the issues I deal with brings…

I use a handicapped placard for my youngest son, Caeleb, who has hemophilia and deals with complications from the clotting factor used to treat his illness, which causes him to have pain. Caeleb, 15, participates in his school’s marching band and practices after school four days a week. At the end…