My husband, Jared, and I are at a point in our lives where our careers have taken on greater significance. It seems like just yesterday when we were college students eager to graduate and experience life, curious about the mysteries that the future might hold. We were figuring out our…
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Clap After Every Pirouette
When my daughter was little, she had the most amazing dance teacher, Jenna. Jenna was a mom of boys who loved the rough and tumble, but her dance studio was all about learning to move young bodies with grace and fluidity. While we no longer head off to Jenna’s classes…
I recall an early experience with anxiety. I was standing at the back of the church, ready to appear before the congregation to offer the sacrament of communion. But something held me back. The more I fought my feelings, the more I struggled. I took labored breaths as I stood…
With so many injuries lately, possibly because of a lack of exercise, I found it necessary to finally learn the ropes of self-infusion. Self-infusion of critical factor is important for me to prevent and treat bleeding episodes. As much as I have wanted to learn the craft, I…
For the longest time, my son Caeleb being in a wheelchair was just part of the normal workings in my home. The constant bleeds that kept him immobile were in the forefront of my thoughts as I watched him struggle to get around. But after five years without bleeds,…
I am a woman with mild hemophilia. I was angry when I realized that I had gone years without proper diagnosis and treatment. Over the years, I have had multiple bleeds that would have healed more effectively with access to factor replacement products. Many people mourn…
The importance of keeping a consistent schedule cannot be understated. A solid daily routine can help you save time, be more effective, and reach goals faster. As a new mom and wife to a person with hemophilia, scheduling does not come easily. Most of the time, my schedule is…
You don’t have to look far to find people who are afraid of needles. There is something to be said about sharp, pointy things digging into your flesh. The process is not fun, and we endure it knowing that the medicine will fulfill its purpose. We hope to feel better…
I attended the Hope for Hemophilia conference last weekend and met some wonderful people. I delivered a keynote address and shared my story of raising sons with hemophilia and holding on to hope. It was a special experience and I am grateful for the opportunity. The day after…
I’m Bleeding, Believe Me
I recently attended a national conference for women with hemophilia. Common themes emerged as I listened to women’s stories of life with bleeding disorders. The number of women dismissed by top medical professionals working for hemophilia treatment centers (HTCs) was alarming. I wondered why this is happening. Dominant…
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