In the Twinkling of an Eye - a Column by Joe MacDonald

Almost 27 years ago, I received the title of caregiver when my first son, Julian, was born. Not realizing that my role in his life would change over the years with his hemophilia, I gladly performed my duty and helped him navigate the waters of medical care. Ten…

Last Friday started like any other day. I felt excited that I’d survived my first week back at work after an incredible vacation in Washington, D.C. I began to prepare a mental schedule to order my day. As I thought of the many things around the house that needed my…

After I had spent a few days lobbying legislators in Washington, D.C., my youngest son, Caeleb, joined me for some much-needed time together. I met him at the airport to start our madcap adventures. He was in a wheelchair due to chronic pain from numerous spontaneous bleeding…

Last Thursday, I visited Washington, D.C., to join my fellow blood brothers and sisters in lobbying legislators regarding issues that directly affect the bleeding disorders community. I must admit that I was a little nervous. Several times, I wondered, “What in the world am I doing here? I’m only…

This week, I’m doing something I’ve never done before: stepping into the ring of politics and lobbying my congresspeople. Many of those in the bleeding disorders community gather annually in Washington, D.C., to meet with U.S. representatives and senators. The goal is simple: to remind legislators that medical care…

The singer onstage opened his mouth, and notes flew through the air, falling on the ears of everyone listening. His tone indicated a beautifully powerful lyric tenor voice as the song filled the space, hypnotizing the crowd. As he finished his first number, the crowd roared with joy. He…

My younger son, Caeleb, struggled to get to his feet and go to physical therapy today. His right ankle has very little cartilage because of hemophilia complications, and he often struggles to get around without the assistance of a cane or walker. He looked at me and…

It’s hard to believe, but my youngest son, Caeleb, will graduate high school in just a few months. I think back over the past 18 years of his life and stand in awe regarding the difficulties he’s faced while living with hemophilia. In his elementary school years, he struggled…

If there’s one thing that moves me to tears, it’s sharing the love I have for my sons. I think of the million and one directions that once lay before me and how I chose to follow my heart, marry the love and joy of my life, and raise children.

Today started out like most any other day. I walked into the room of my youngest son, Caeleb, to wake him up to get ready for school. I love the ritual of turning on the lights and singing a familiar tune to my family. As I began, however, I found…