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…
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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…
My youngest son, Caeleb, is a sophomore in high school. Being with his marching band “people” makes him very happy. Caeleb plays the trumpet, but he also plays the synthesizer in the percussion pit (which performs from the sideline) during marching season. I am grateful for the band director’s…
Last week, my husband, Jared, tested positive for COVID-19. He had been experiencing a tickle in his throat for the last couple days but didn’t have other symptoms. Then he woke up with a persistent cough and decided to get tested. As we were driving to…
I am convinced that many of us live for “aha” moments. I’m referring to those times when an unexpected realization occurs that either confirms or changes the course of one’s life. These moments are often welcome guests, but sometimes they rage like a fierce hurricane, and the best we…
Recent Posts
- Why progress in von Willebrand disease treatment finally feels real
- Global survey finds many women with hemophilia face diagnostic gaps
- Learning how to infuse factor gave my family freedom, part 1
- Guest Voice: My sons with hemophilia are blessings after a devastating loss
- Love shows up to navigate hemophilia, distance, and family bonds