Columns

In April 2018, I began writing this column. Over the four years that I’ve shared stories from my heart, I cannot believe that my family has endured many bad moments associated with hemophilia. Yet I’ve also chronicled the joyous times we celebrated, even in the middle of overwhelming darkness.

There’s something special about each day of the week. I enjoy Thursday because my weekend begins at the close of the day. I enjoy Wednesdays because it’s the middle of the week, and the weekend is closer (I think there’s a pattern here). Sundays are special because, as a…

Last week, my husband, Jared, and I booked a visit to our trusted dentist. We hadn’t had our regular teeth cleaning for over a year because of pandemic restrictions. Alarmed by the amount of tartar on our teeth and frequent toothaches, we thought we’d better go in for dental…

I recently participated in a webinar called “Mild Matters,” organized by the Hemophilia Federation of America. The purpose was to discuss challenges faced by people with mild bleeding disorders. When the discussion turned to self-advocacy, I began to think about my own history of dealing with von Willebrand disease…

My sons reacted to hemophilia treatment in entirely different ways. My oldest son, Julian, had one port-a-cath, while my youngest son, Caeleb, had eight. Julian had two surgeries, one to place the port and the other to remove it, while Caeleb required 16 surgeries for port placements and removals.

There’s one thing I want more than anything: When my sons are grown with their own families, I want them to come home for Thanksgiving (without my having to beg). I dream of sitting around the table with my sons, their significant others, and hopefully their children. I want…

Meaningful connections with other people are of incredible value to people with chronic illnesses. My husband, Jared, and I can both attest to this, as he lives with severe hemophilia B and a seizure disorder, while I am newly diagnosed with both bipolar II disorder and the inattentive…

I recently visited the small town of Arcadia, Florida, which is not far from my home. Arcadia holds an important place in history for the topic of hemophilia and AIDS. The story of what happened there is a lesson about how ignorance can fuel hatred and knowledge…

Next month, April 21–23, the MacDonald family heads to San Antonio to attend the Hemophilia Federation of America’s 2022 Symposium. I cannot wait to see old friends and participate in educational sessions regarding upcoming treatments and services to the bleeding disorders community. My wife, Cazandra, and I haven’t…

I’m a homebody. I work from home most days, and when I’m relaxing, I’m quilting, sewing, or weaving. The gratitude I have for my home and my activities there is overwhelming in the best of ways. While the pandemic has caused many to feel trapped, unable to move about the…