Columns

Factor and supplies used to take over my kitchen. Boxes of syringes, Betadine swabs, dressing kits, monthly Sharps containers, and box upon box of factor arrived and needed to be organized and put away. The number of items was overwhelming. Sometimes the boxes would stay unopened for a…

My husband, Jared, and I are on the cusp of making a major life decision. This decision had always been part of our long-term plan. We just didn’t expect it to happen so soon. Still, one event led to another, and we found ourselves standing before the option we are…

No one likes to feel out of control of their body, but those of us affected by chronic illness know that when the disease rears its ugly head, we may struggle to find a sense of power. As the father of two sons with hemophilia, I understand how the storms…

Is it starting again? Is hemophilia about to take over my world? For more than seven years, my family has enjoyed life with hemophilia in the background. My youngest son, Caeleb, is 15 and has severe hemophilia A with an inhibitor. His early years were filled with complications that led…

I’ve been busy setting up my personal website and blog lately. So far, chronic illness and disability are two of my major themes. My husband, Jared, has hemophilia and a seizure disorder, and I see him face the challenges of being disabled every day. His conditions affect our marriage, family,…

The events of last weekend proved chaotic and unexpected. On our way to see a movie, my family was involved in an automobile accident that left my vehicle inoperable. The person who caused the collision sped away, leaving us alone and frightened. I called 911, and a fire truck, ambulance,…

My family was involved in a car accident. An afternoon to the movies turned into phone calls to the police, 911, and the insurance company. Left behind by a reckless driver, I am grateful that two witnesses came forward. Having never been in an accident, I hope this is my…

What was my reaction the first time I encountered a comprehensive hemophilia treatment center (HTC)? Relief! I couldn’t believe the resources that were available to those fortunate enough to be treated at one. With quality care, emotional and employment counseling, physical therapy, dental health, and school assistance, the HTCs seemed…

As of this writing, my family and I have been in quarantine for over a week because my husband, Jared, has COVID-19. We were anxious after he tested positive,  because we didn’t know what the outcome would be. Thankfully, he’s doing much better, and his symptoms have subsided. He…

I am a pastor and a parent of two sons with hemophilia, a rare, genetic bleeding disorder that occurs in about one in 5,000 male births. My youngest son has a high-titer inhibitor, which means his immune system has developed antibodies to factor replacement. He’s also had an allergic reaction…