For the Caregiver

Tips for supporting and validating loved ones with hemophilia

Three weeks after my hysterectomy, I was sitting in a hospital emergency room pouring blood. Losing that much blood and not understanding why was scary. While waiting to be seen by a doctor, I posted on social media because the idea of people praying for me was comforting, even though…

Building and nurturing resilience in children with hemophilia

Growing up, I was coddled — constantly protected from the world, from pain, and often, from myself. My parents loved me deeply, but understandably, fear sometimes ran the show. Decisions were made for me. I wasn’t encouraged to speak up, take risks, or manage my condition. They meant well. But…

Person-first: Supporting your child’s identity beyond hemophilia

Our family’s love for live theater is a bond we cherish. We make it a point to attend as many shows as we can in our area. I vividly recall the first time we saw the musical “Wicked” onstage. My oldest son, Julian, was 10 years old, and…

Mastering the debrief: Handling dialogue after tough appointments

I can feel and smell the quilts my grandmother made. As a child, one of my favorite quilts was a green one with a yellow border. The ties that bound the layers of the quilt together were scattered across the quilt in various colors. The coldness of the green material…

How to avoid infantilizing people with hemophilia

My husband, Jared, was nearly 30 when someone looked at the scissors in his hand and said, “You shouldn’t be holding those. What if you have a seizure?” He was in the middle of a task — not doing anything risky or dramatic. The scissors were a tool, nothing more.