I recently hosted a retreat for United Methodist deacons from New Mexico and Arizona, where we gathered to share our ministries, develop new relationships, and connect. Deacons are called to serve beyond the church walls, and I’m always amazed at the work we do in the world. At the retreat,…
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When I worked for the Hemophilia Federation of America (HFA), I was incredibly grateful for its dedication to bringing awareness to the needs of women with hemophilia, many of whom had a mild form of the disorder. As I observed our community events, I realized that a group was…
I’ve been writing about life with my husband, Jared, who has severe hemophilia B and epilepsy, for many years now. In doing so, I’d often refer to myself as a caregiver in passing. But here’s something that might surprise you: This column is the first time I’m openly…
I was at the Coalition for Hemophilia B’s Annual Symposium this month in Orlando, Florida — surrounded by my community, sharing meals and meaningful conversations — when it happened. No bump. No injury. No accident. I was literally just standing in the elevator when I felt it: a sudden,…
As I sat in my office chair working on bills and other household needs this past Saturday afternoon, my youngest son, Caeleb, approached me and asked if we could talk for a few minutes. His mannerisms told me he needed to share something dire, so I stopped typing, turned to…
As I transition to a new job in a new city, I’m meeting new colleagues at work. In these early days of getting to know everyone, I share only what I’m asked. I’ll share more of my story in time, especially since joining a team requires trust and acceptance, but…
“We are more than symptomatic carriers, we have hemophilia, too!” a large group of women shouted when I attended the first National Conference for Women with Hemophilia in November 2018. As a woman with hemophilia, I know about the struggle for legitimacy in a male-dominated disease space. What I…
Last weekend, our daughter graduated from kindergarten. As she proudly crossed the stage, I found myself reflecting on how far we’ve come — not just in terms of our child’s academics, but as a family living with hemophilia. As she received her diploma and later danced through musical numbers…
On April 1, the U.S. Department of Health and Human Services (HHS) announced a restructuring that effectively eliminated the Division of Blood Disorders and Public Health Genomics at the Centers for Disease Control and Prevention (CDC). For many, this news went unnoticed. But for those of us in the…
Last night, my youngest son, Caeleb, and I talked about our unique experiences with Easter egg hunts. My boy is now a 19-year-old man who is finishing his first year at the University of New Mexico. He enjoys studying cinematography and graphic design and hopes to find an internship in…
