January is my three-year “clotaversary,” a holiday I celebrate every year after surviving a life-threatening situation during a major surgery. I have von Willebrand disease (VWD) and hemophilia B, and without treatment, I’m at risk for dangerous bleeds during surgical procedures. In 2019, I needed a radical…
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Last weekend, I met with some of my pastoral colleagues at a restaurant in Santa Fe, New Mexico. The food was terrific and we dined with the mountains behind us. I looked out the window to see several ski runs etched in the slopes and thought, “My goodness, it doesn’t…
I enjoy family vacations. While we don’t necessarily take yearly trips, we cherish our adventures. My husband and I want to take a trip to Washington D.C. with our son, Caeleb, 16, who is a history buff. We have put the trip on hold because of the COVID-19 pandemic,…
My husband, Jared, recently celebrated his birthday. Hooray for 29 years of fighting and surviving! He opted for a low-key celebration at home with me, our daughter, Cittie, and her nanny. Because it was a weekday and I had to work, we didn’t have much time to do anything particularly…
Women Can Have Hemophilia, Too
Imagine you are in an emergency room with a life-threatening bleeding problem. How would you convince an ER doctor that you are a woman with hemophilia if they don’t think women with hemophilia exist? I have both von Willebrand disease (VWD) and hemophilia B, a less common form…
Next week, my youngest son will celebrate his 16th birthday. It’s hard to believe that so much has occurred in his young life. He has experienced the heartache of living with a bleeding disorder, and has often been paralyzed by his fear of needles. He has undergone 16…
Teaching teens to take control of their bleeding disorders must begin early. I believe in empowering my sons with the information they need to go out into the world. When they were toddlers, I talked about the different items they’d need when we did infusions, and they began to…
After three months of living in a rented condo, my family is moving to a full-size house. My husband, Jared, and I want to think of this event as our Christmas and New Year’s blessing. Though the change was unexpected, we welcomed it with open arms. The only hassle,…
Welcome to 2022, a new year and a clean slate. Year after year, my New Year’s resolutions are the same: eat a more healthy diet, work out, and lose weight. This year will be different. Recently, a nurse phoned from the specialty pharmacy that provides medication to treat my von…
I will never forget the day my wife told me that she was pregnant with our first child. I stood there, unable to process her announcement of our boy’s impending entry into the world. I couldn’t fathom how my life would change. I struggled to figure out how I might…
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