Columns

I attended my first women-only hemophilia retreat in the fall of 2016. To say the weekend was an eye-opener would be a gross understatement. It changed my life. First of all, I learned that I was not alone in my struggles to understand lifelong bleeding…

Lately, I’ve spent a lot of time driving on Interstate 95. I barely like driving across town, let alone spending eight or more hours a week on one of the most congested stretches of highway in America. But I’ve joined the legion of long-distance commuters on the East Coast. Several…

A lack of control is one of the most frustrating things about staying in the hospital. Doctors, nurses, and everyone else enters the room without permission. Nothing runs on my schedule. I need to find a way to reclaim at least a small part of my life. I do not…

Our baby girl turned one earlier this year. Watching Cittie mature makes me reflect on the innocent phase of childhood. Life was so simple back then. I believed games and toys to be major issues of the utmost importance. I stayed late after school and played with my friends.

It was a beautiful Sunday afternoon and I encouraged my son Caeleb to take our dog, Betty, for a walk. He gathered the necessities of a 14-year-old — headphones and music — and put Betty on her leash and off they went. Encouraging my son to be active is difficult.

Carrier moms — those whose sons or daughters have hemophilia — inspire me. I see you struggle, sometimes daily, with the realities of parenting a child who has a chronic condition. Your tireless dedication necessary to ensure a child’s safety and proper medical treatment can be challenging and…

Memories flooded my mind as I was going about my usual work today. I suddenly thought about my life before I met my husband, Jared, before my pregnancy, and before our daughter, Cittie, was born. I thought about my depression. And then I thought about our future as…

As a father of sons with hemophilia, I know my way around a hospital like the back of my hand. We have visited the emergency room far too often. An internal bleed from a fall or a spontaneous joint injury would start at home and continue to cause…

I’ve been living with chronic pain for several years. When I’m asked whether I had an accident or trauma to my neck and back, my answer is no. But I think hemophilia indirectly triggered my pain. Years ago, when my youngest son, Caeleb, was in a wheelchair, I think…

Inheritance patterns in hemophilia are a common discussion topic for many reasons. Among the reasons that people seek information about hemophilia inheritance is their desire to better understand if their future children might be at risk for inheriting the disorder. Not only do people express concern regarding their children, but…