A symphony is a long musical piece with a clear structure, traditionally divided into four sections called movements. Each has its own tempo, mood, and rhythm. The pauses between them give the audience time to take in each part. Usually, the first movement is fast and lively. Then comes a…
Columns
I’ve realized that one of the greatest challenges of parenting is teaching children how to care for others without making them feel responsible for everyone’s well-being. This is especially complicated when one parent lives with a disability or chronic illness. My husband, Jared, has severe hemophilia B and epilepsy.
Three years. That’s how long I put off a colonoscopy I’d been told not to put off. This wasn’t a first screening I could shrug off. At my previous colonoscopy, doctors found and removed a precancerous polyp. The instruction was simple: Come back in five years for a follow-up. And…
When my oldest son, Julian, was 6, he started a ritual whenever I traveled away from home: He selected a small stuffed animal from his collection and placed it in my suitcase. When I asked why he had given me the toy, he responded, “Because I don’t want you…
For more than nine years, I’ve shared my experiences raising two sons with hemophilia through hundreds of columns, articles, and videos. Sept. 30 will be my last column, and these last few pieces capture what matters most to me. I’m excited for what comes next in my writing journey.
Here is something many people do not know about me: I spent a year studying industrial pharmacy. I don’t always think to mention it. After all, I never earned the degree. I had attended a science high school, so pursuing a science degree at university felt like the natural next…
When I was diagnosed with hemophilia decades ago, I was 10 years old, and nobody asked me what I wanted. That isn’t a complaint about my doctors. There was nothing to ask. There was hemophilia B and von Willebrand disease, and one way to treat them. You…
I never saw myself as an athlete. In middle school, I played volleyball, sat on the bench for most of basketball season, and played softball in the summer. As an adult, I tried Curves, Jazzercise, some yoga, and went to the gym. Then, in 2016, I made a choice that…
I thrive as the wife of someone with severe hemophilia B. That does not mean hemophilia has made our marriage easy. It has brought fear, limitations, and responsibilities into our lives. It has also deepened the trust and communication between my husband and me. Over time, I have…
There’s a specific kind of exhaustion that comes from being asked — mid-appointment or on a call with my specialty pharmacy — to recall something my body has already tried to forget. When was your last bleed? What did you infuse, and how much? I used to answer these questions…
