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

Raising children is like building a house. For those of us who manage chronic illness and other disorders, our floor plans may look a little different, but at the end of the day, we all want our loved ones to be strong and sturdy, and ready to face life’s…

I do not have hemophilia. My sons are the ones who live with a chronic bleeding disorder, and at first, I struggled to find something we might have in common. My wife and I are musicians, and the running question during my wife’s pregnancies was, “What if they are…

I do not like to tell people that my sons are hemophiliacs. It is not that I am blind to the reality that they have a bleeding disorder, but my boys are so much more than a diagnosis. Why address them as if they carry a title or wear a…

As I mentioned in an earlier column, the news that my firstborn son had hemophilia caught my wife and me entirely off guard. When we spoke with the obstetrician, the only word we heard was hemophilia. We later learned that my son had another diagnosis: a low inhibitor titer. The…

I am sitting in a favorite restaurant with the three great loves of my life: my wife and two sons. It is Valentine’s Day, and the place is packed and loud. But the noise fades into the background as I find myself captivated by the conversation at our table. We…

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…

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…

We all have a story about a time when our lives changed. Some memories elicit the best of times, while others recall deep pain. For me, the day my eldest son, “MacDonald the Older,” was diagnosed with severe hemophilia proved surreal. I had no idea what a bleeding disorder…

We have looked forward to this moment for years. No longer do we have to find veins or stick a 2-inch needle into a port-a-cath under the skin every day. All that is required is a subcutaneous injection every two weeks. The future is here, and while we exude…

My son couldn’t walk, and placing him in a wheelchair proved to be impossible. Internal bleeding into a knee or ankle forced my “stinky boy” to remain in bed. I hurt for him, thinking, “If only he could get in a wheelchair, he could see the world.” We wished…