I am a fierce advocate for my sons. I question doctors professionally. I say no and ask for other options. I have even found new research and treatment options to offer physicians. I do not give up and even risk being known as one of those moms. If I…
The terrible, awful, no-good, very bad year for my family is not 2020. It was 2013. My youngest son, Caeleb, spent most of that year in the hospital. In 2013, Caeleb, who was in second grade, missed about 70 days of school due to recurring bleeding in his…
I have never heard anyone say, “I wish I could relive middle school.” It is a time when bodies rage with hormones and kids are gangly and awkward with acne and questions. It is also a time when grace is not extended to others. Kids can be mean.
The current state of our world has me longing for something. It’s something that when gone, nothing remains quite the same. What I long for is routine. Yes, I miss the humdrum and the mundaneness of routine. I can still count on some aspects of my life remaining steady, such…
Quarters. I ended up with a fistful of quarters the other day and had flashbacks to the early days of hemophilia. When my firstborn son came into the world, we lived in Houston. In the early days of Julian’s hemophilia diagnosis, trips to the Texas Medical Center were…
Sometimes I am overwhelmed when I think about the hemophilia journey my sons are traveling. My first memories about this date to June 1996, when my first son, Julian, was born and diagnosed with severe hemophilia A. The early days of learning how to access a port,…
My chronic pain is not caused by a bleeding disorder, but it does give me perspective on the pain my youngest son, Caeleb, endures from hemophilia. Friends stopped by on a recent afternoon to meet our new puppies, and I shared a homemade pie that was fresh from the…
My 24-year-old son, Julian, lives out of state, where he attends college and works as a barista. He pays his bills and “adults” well, making me immensely proud of him. When he was a teenager, I didn’t think I would live to see his adult years. Like most teenagers who…
A new mom recently called me to share her concerns and to ask questions about choosing a new treatment for her son. She needed a listening ear, and just thinking about the possibility that her little boy might never need an implanted port gave me chills. I thought…
When I think back to the early days of raising my first of two sons with hemophilia, I see how I have changed. Back then, I was a scared young woman trying to figure out what the diagnosis of a rare medical condition meant. I found myself living…
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