Columns

Hard lessons in the leap to a more independent life

Many of my recent columns have focused on my youngest son, Caeleb, and his transition into adulthood. I’ve shared how we’ve empowered him to live his best life, including lessons on taking responsibility for himself as he navigates the world. He must take the baton that we’ve handed him. We…

The challenges and triumphs of factor self-infusion

My husband, Jared, has been performing his factor infusions for his hemophilia B for over three years now. In that span of time, he’s learned so much — not just about veins, syringes, and technique, but also about his body and his limits. Infusing factor IX has become…

The emotional toll of caring for a child with hemophilia

Recently, I attended the Florida Bleeding Disorders Association’s Women’s Educational Retreat in Hollywood, Florida. I came away with several important takeaways, but one presentation by Lucila Ramirez Donaldson of Genentech truly resonated: caregiver burnout. Many of the women attending were mothers or partners of people living with hemophilia. I’ve…

Times when we can be parents and not caregivers

Despite what appears to be a tranquil season regarding my sons’ hemophilia, I know it simmers right under the surface and could rear its ugly head immediately. For now, life is good. As my wife, Cazandra, and I are moving a couple hundred miles away as we…