Doctors, nurses, hospitals, and clinics are simply part of life with a rare, chronic condition such as hemophilia. Many people in the bleeding disorders community learn early on that speaking up for themselves and their loved ones is crucial to their care. Over the years of raising two sons with…

Before cellphones, memorizing phone numbers was a necessity. Racing home to make a phone call on the landline was how I made plans with friends and scheduled appointments. With smartphones, I can make a call with the touch of a button, no matter where I am. Although I no longer…

I have guaranteed quality time with my youngest son, Caeleb, who is 15 and has hemophilia, every Sunday morning. He comes with me to the church where I serve as pastor, and he video records the service each week. Our commute is 40 minutes one way, and in that time…

Though the school year is nearly over for my youngest son, Caeleb, who is 15, he just returned to in-person learning for the first time since the pandemic began. Caeleb, who has hemophilia, is a high school freshman and a new student to the school district this…

As an expectant mother, I dreamed about my son’s future. I imagined the sound of his voice, the daily rituals we would create together, and the way I’d simply hold and love him with every part of my being. When my first son, Julian, came into the world, my…

My youngest son, Caeleb, became best friends with a girl named Taylor in sixth grade. Then, our family moved away to Texas, but returned to New Mexico two years later. Caeleb and Taylor now live an hour apart. Despite it all, they have remained close. It is remarkable for a…

March is Bleeding Disorders Awareness Month. It is a time when organizations such as the National Hemophilia Foundation and the Hemophilia Federation of America encourage the community to share their stories about life with a bleeding disorder. Many use social media to spread awareness by posting…

When my youngest son, Caeleb, was in elementary school, my main objective was to get him to school every day and not receive a phone call from the nurse. That may not sound like an accomplishment, as most people send their children to school regularly without issue, but complications…

My adult son, Julian, does a wonderful job managing his hemophilia. He infuses twice a week per doctor’s orders, and if he has a breakthrough bleed, he treats as needed. Julian is extremely fortunate, because throughout his 24 years, hemophilia has not been the center of his life. His journey…

Most people probably have a handful of good stories to tell at parties, but someone with a rare medical condition never is at a loss for a new tale to tell. I recently led a workshop to help people in the bleeding disorders community craft their “elevator pitches,” which…