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The other day, I asked my husband, Jared, if he’d ever consider leading a harm reduction seminar for the teens in his hemophilia organization. His immediate response was, “Of course — but would the parents be ready for that conversation?” That question hit me. As…

The other day, a neighbor stopped me in the walkway and asked, “Are you feeling OK?” I said yes, I was fine, though I was a little surprised by the question. Then came the explanation: They’d read I have a blood disorder. That moment stuck with me. On the outside,…

As I sat in my chair at home, I heard Julian, who’s 29 and my oldest son, singing at the top of his lungs. Every note floated higher as if it would touch the clouds. My thoughts were interrupted, but I welcomed his sound, which fills my soul. Julian expresses…

Every person is a walking compilation of stories that make up their book of life. As the mother of two sons with severe hemophilia, I have the privilege of watching their books develop. One of the most anxiety-filled chapters was when they first went to day care. Memories of…

Well, it was bound to happen sometime. My first ambulance ride. I was awakened suddenly from a deep sleep at 2 a.m., my upper back in excruciating pain. A 10 out of 10. I waited a few seconds, trying to take a deep breath, to see if the pain would…

Some days it’s easy to see the cracks in our family’s situation — the unpredictable costs, the logistics of keeping medication on hand, the mental load of being a partner to someone with severe hemophilia B and epilepsy. But every so often, I remind myself that there are…

When I walked into the LadyBugs conference in Salt Lake City last weekend, the energy was immediate: part reunion, part rally, and part safe space for women who understand life with a bleeding disorder. Hosted by the CHES Foundation, LadyBugs is a program for women ages 16 and older who…

My youngest son, Caeleb, came to the table the other day with a massive grin on his face. “Guess what?” he said. “I just received an email from housing at the University of New Mexico [UNM], confirming that I have a dorm room for the school year. Can you believe…

As a hospice chaplain, I offer space for people to speak. I meet them where they are as they grieve. From patients who need to reveal their regrets and disappointments to family members wracked with guilt, I am present and give them space. No judgment. Sometimes it’s difficult not…

“Whiskey-Bravo-six-Zulu-Yankee-Yankee looking for a radio check,” my dad called out into his faithful Kenwood handheld 2-meter radio. “W-B-6-Zed-Y-Y, I hear you loud and clear,” came an answer from radio land. This was my dad’s call sign — the constant background noise of my youth. Ask any childhood friend who spent…