The other day, I found an old document from my husband Jared’s last hospital stay — the one after his freak accident on a pool slide. I’d written about it before, but seeing the discharge papers brought it all back. The memory feels a little funny to us now…
Columns
A few weeks ago, I spent a long weekend at a women’s retreat hosted by the Coalition for Hemophilia B in Stone Mountain, Georgia. Years ago, I attended the iconic laser show at Stone Mountain and have always wanted to return. I was thrilled to find out the show was…
Sometimes I forget I have hemophilia. I know that sounds silly, particularly after years of struggle to obtain a diagnosis, yet it’s true. This forgetting is great when I’m healthy and have no issues. There are times, however, when it’s imperative that I remember I have hemophilia. Sometimes I…
Caeleb, my youngest son, is 19 and preparing for his second year of college at the University of New Mexico. He’s experiencing an issue at school that required him to write a letter explaining the difficulties he faced because of hemophilia during his freshman year. As a child, he…
Several years ago, I spoke at a great bleeding disorders conference in California. Around 300 people attended, and we all had wonderful interactions. The attendees engaged with one another and found hope in their shared experiences. I left the conference energized and proud to be part of such a…
I recently came across a social media post that hit home. It began: “Never judge someone with a chronic illness if they …” and went on to list things like skipping meds, eating foods that might trigger symptoms, resting all day, or even doing something that looks “wrong”…
Mother Nature was not kind to my area of Florida last year. First came Hurricane Helene, bringing widespread flooding. Just two weeks later, Hurricane Milton struck, unleashing high winds and another round of devastating floodwaters. The effects are still visible today: Businesses have shuttered, restaurants remain closed, and the damaged…
Last in a series. Read parts one and two. After our oldest son, Julian, was born and we took him home, the first six months went smoothly. His hemophilia diagnosis came up occasionally, but it didn’t directly affect our quality of life. We later learned that those early…
My family recently moved to Las Cruces, New Mexico. Boxes, packing paper, and tape have been a constant over the past few months. I’m grateful that my husband and sons are experienced movers. We all have a system, a rhythm to packing that we don’t even discuss. I pack…
Years ago, I attended a bleeding disorders conference where a person with hemophilia shared about an encounter they had with a law enforcement officer during a routine traffic stop. In order to appreciate the exchange, it’s important to understand that those of us with hemophilia are missing a protein…
Recent Posts
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- Conference for the rarest of bleeding disorders brings a sense of community
- Quick action could prevent fatal brain bleeds for children in poor nations
- For hemophilia parents, letting go of control is hard, but necessary
- A recipe of support for parents new to a hemophilia diagnosis