Meticulous planning is familiar to many of us in the hemophilia community. I’ve previously discussed how my family accommodates my husband Jared’s severe hemophilia B while planning ahead, whether it’s for travel or our future. For instance, preparing for trips and vacations involves a checklist; we…
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In 1975, when I was diagnosed with hemophilia B and von Willebrand disease, my dreams of participating in sports were soon shattered. I was barred from dance, cheerleading, and even gym class. My high school’s athletic director also barred me from joining the varsity swim team, concerned…
I entered the bedroom of my youngest son, Caeleb, one recent morning to offer him my usual cheerful greeting. That’s when I found him lying in bed in excruciating pain. Caeleb has hemophilia A, and years of damage from internal bleeding episodes have left him with little…
I marvel when I watch reporters on the news who can deliver their reports in the midst of gunshots, riots, battles, and air raids, events that many in the U.S. might find difficult to comprehend. These brave men and women seem always prepared to hop on a plane to anywhere…
While searching for content ideas for a client, I stumbled on an Instagram post that immediately caught my attention. “Human beings are seasonal,” the post stated — more or less, as I can’t recall the exact wording. But I’ve managed to internalize three key points on the subject: Life has…
Last week, I was privileged to attend Genentech‘s Rare Blood Disease Summit at its campus in San Francisco. I’ve been proud to serve on this biotechnology company’s Women in Hemophilia advisory board for the past two years. The invitation-only summit was a small but powerful gathering, bringing together the…
Last week, I attended an alumni meeting for the Austin Presbyterian Theological Seminary in Texas, where I earned my doctor of ministry degree. During my free time, I walked around the University of Texas campus and couldn’t help feeling the energy from all the students who moved like…
My husband and I typically fill certain roles in our home. I do most of the cooking; he takes out the trash and handles automotive maintenance (by going to the appropriate mechanic). But after 30-plus years together, we can seamlessly trade roles and share in all the responsibilities. When…
In the hustle and bustle of daily life, we often overlook the extraordinary within the ordinary. My husband, Jared, has hemophilia, and we’ve found that living with the bleeding disorder has a way of sprinkling our lives with one-of-a-kind situations that might seem mundane to us but are…
My oldest son, Julian, is preparing for a big audition. He hopes the casting director will hear his submission and ask him to go to New York for a final, on-site callback. If the powers that be select him, he’ll perform in his first national touring production. My son displayed…
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