Columns

A genetic mutation for hemophilia has passed through five generations of my family. We can trace it from my great-grandfather, known simply as a “bleeder,” to my nephew. My great-grandfather passed the genetic mutation to my grandmother. My grandmother passed the genetic mutation to my father. My father…

Last weekend, I had an experience I had long dreamed about. This experience had been on my list of “things to achieve” for several years since I met my husband, Jared, who lives with hemophilia. Many women my age dream of treating themselves to a huge shopping…

Recently, I discussed an issue with several men with whom I meet on Monday mornings. We talk about various topics, and that morning’s conversation centered around the idea of forgiveness. For a healthier life, we must let go of resentments and embrace change. Only through surrendering our pain can…

My adult son is 22 and living at home. He will be moving to a neighboring city next month and will go back to college in the fall. He was recently hired at a coffee shop and has been commuting the 90 miles one way about four days…

Dear Chronically Ill Partner, I know life isn’t always easy for you. You have grown up believing life dealt you a terrible deck of cards. You’re no stranger to the feeling of suffering. At one point or another, you’ve even questioned the motives of the universe in…

A few years ago, “MacDonald the Younger,” his mom, and I went to his yearly checkup with the Hemophilia Treatment Center to review our road map (healthcare chart), report on activities, and make sure that he was taking the correct dose of product for his height and…

I’ve found the stress of my first two months of fatherhood overwhelming. We’ve had many sleepless nights as we’ve adjusted to meeting the constant demands of a crying baby. My wife and I are incredibly sleep-deprived. But seeing my child smile when she sees my face first thing in the…

It’s easy to distance yourself from the issues of a bleeding disorder when everything is going well. My youngest son, Caeleb, has not been in the hospital for an overnight stay in several years, and the pain he would endure from repeated bleeds is a distant memory. He…

February 2014 was a significant time in the life of my family. For years we saw our younger son regularly suffer bleed after bleed. He suffered from an inhibitor and an allergy to factor. Nothing seemed to help. We felt lost and unsure about how to continue seeking…

When you’re a parent to a child newly diagnosed with a bleeding disorder, the immediate concern is for your child. What do I do next? Will they be OK? What will life look like from now on? You find yourself searching for answers and developing a support system…