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…
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,…
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…
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…
Over the past few years, my youngest son has developed pain in joints that were damaged by internal bleeding episodes. As a result, he struggles some days to walk due to an arthritis-like ache. His hematologist prescribed the medicine Celebrex (celecoxib) to help with inflammation, which decreases…
Many times, when I look back at how I handled my sons’ hemophilia care, I quickly remember the poor choices I made. I ache over decisions that caused heartache, and allow them to capture my full attention. Too often, I fixate on how one decision affected life choices, often leading…
When my oldest son was 2 years old, he came up to me with a serious expression and said, “Dad, this monster slapped me right in the face.” I told him I had some monster spray in my room and would ensure that his room no longer contained any strange-looking…
About seven years ago, my youngest son experienced the worst of the worst regarding hemophilia. My boy missed most of his second-grade year — 128 of approximately 180 instructional days — because of continuous breakthrough bleeding episodes followed by extended hospital stays. Unfortunately, we could not get ahead of his…
There are moments when dealing with hemophilia proves overwhelming and we lose ourselves in the fight to overcome the pain of breakthrough bleeding. My youngest son, affectionately called “MacDonald the Younger,” dealt with two target joints, or places where bleeding episodes occur repeatedly, prior to his current treatment. His…
Many years ago, when hemophilia came into my family’s life, rearing its ugly head like a lion ready to devour its prey, we held on to anything we could. As the chaos of chronic illness overtook our lives, my wife and I made plans to help our children manage their…
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