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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, and later,…

Lately, I’ve been finding myself in need of more “alone time.” Now that I am a mom to a hyperactive and curious toddler, most of my days are spent listening to nursery rhymes on repeat, chasing our baby girl and making sure she doesn’t hurt herself while exploring her surroundings,…

My family loves dogs. My wife and I have never known married life without a beloved pet. They continue to bring us joy, while at the same time imparting valuable life lessons. Our pets teach us to care for something more than ourselves. Our puppies need us as much as…

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 oven.

When I have the opportunity to gather with my brothers and sisters from the hemophilia community, I notice we all have stories to tell. When you live with a rare disease, you are bound to have unique interactions with medical providers, family members, friends, and colleagues. These interactions range from…

Fresh off the heels of the National Hemophilia Foundation’s virtual symposium earlier this month, I just attended another online conference hosted by the Hemophilia Federation of America. One thing that drew me to this event was the number of sessions dealing with mental health, for both caregivers and…

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…

Our baby, Cittie, is now the textbook specimen of a toddler. My husband, Jared, often finds himself surprised by how quickly she is developing. Her vocabulary doubles by the day, and she is even learning interjections. As funny as it is to hear her suddenly screaming “Oh no!” or a…

I will never forget the first time the Hemophilia Federation of America asked me to facilitate a discussion group for parents of the newly diagnosed, at the federation’s annual symposium. About 30 parents attended, each with their own issues regarding their children. I sat in my chair and quickly…

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…