Many times when my sons were younger, I found myself overwhelmed by the constant demands of their bleeding disorder and felt that I had nothing else to give. The needle on my gas gauge was below empty. I felt as if I’d used every ounce of energy and couldn’t…
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Last week, as I was leaving the Coalition for Hemophilia B’s annual symposium in Dallas, I found myself in an Uber headed to the airport. Usually, I wouldn’t discuss my bleeding disorders — hemophilia B and von Willebrand disease — with strangers, but a chance encounter…
I have celebrated Mother’s Day, as a mom, for 24 years. In those years I’ve experienced tremendous joy and insurmountable grief. Some of my deepest grief came right after both of my sons were born. Instead of a time filled with happiness, a cloud of despair loomed as they were…
I am a pregnant entrepreneur. Throw in a husband with hemophilia and epilepsy into the mix, and there you have it: the crazy life I’ve been living for the past five months. Let’s do away with the inspirational mumbo-jumbo that goes, “Everything will be OK, just have faith!” Instead, let’s…
Plan D. That’s what I’m working on now. Last week, I learned that a factor VIII (FVIII) product I’m taking for my hemophilia has had some disappointing results. I can’t say I’m surprised about that, as I had a negative reaction to the medication, including feeling lightheaded and…
Hemophilia is a blood disorder in which patients do not make enough of the clotting factors that control bleeding. Following accident or injury, people with hemophilia may be unable to stop bleeding. In severe cases, patients may bleed spontaneously at joints. While there is no cure for hemophilia, there…
I love the final-night event of a national bleeding disorder conference. Different groups invite community members to play games, the meal is remarkable, and the dance floor begs for us all to gather and celebrate. After the highly informative events offered by leaders in the bleeding disorder community, friends…
It was Christmas in 1978. My brother was thrilled that Santa had brought him exactly what he wanted — a large, bright red firetruck with a ladder that really worked! (Never mind that we were Jewish. Santa always seemed to make an appearance at our home anyway, and we never…
It’s bluebonnet season in Texas. The state flower crawls across the hillsides and along the roads, bringing a vibrant blue to the landscape. People flock to the most prominent patches to sit among the flowers and capture pictures. It’s a Texas tradition. The last time I took pictures in a…
When my kids were little, people reminded me to enjoy my children because they would be in college before I knew it. I never thought much about that sentiment. With both of my sons living with severe hemophilia, I felt like I was going from one thing to the…