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

manual, rest, unexpected, work ethic, pets

Joe is the father of two sons with hemophilia. He and his wife, Cazandra, are active members in the bleeding disorders community and often facilitate workshops both locally and nationally. Joe is a pastor in the United Methodist Church and writes a blog about spirituality and faith. You may follow his blog at www.joekmac.com.

Remembering Special Events That Brought Us Joy

This week, we celebrate Balloon Fiesta in Albuquerque, New Mexico. Nearly 600 hot air balloons fly overhead while we stand in the grass, looking up at the beautiful sight. I cannot help but think back to when my youngest son was 8 years old and unable to walk. We…

Finding Hope in the Worst of Circumstances

No one likes to feel out of control of their body, but those of us affected by chronic illness know that when the disease rears its ugly head, we may struggle to find a sense of power. As the father of two sons with hemophilia, I understand how the storms…

An Eventful Night Reminds Me of What’s Most Important

The events of last weekend proved chaotic and unexpected. On our way to see a movie, my family was involved in an automobile accident that left my vehicle inoperable. The person who caused the collision sped away, leaving us alone and frightened. I called 911, and a fire truck, ambulance,…

Finding Meaning in the Sacredness of Life

I am a pastor and a parent of two sons with hemophilia, a rare, genetic bleeding disorder that occurs in about one in 5,000 male births. My youngest son has a high-titer inhibitor, which means his immune system has developed antibodies to factor replacement. He’s also had an allergic…

Teaching My Son to Take Responsibility for His Life

Over the past few years, my youngest son has developed pain in joints that were damaged by internal bleeding episodes. As a result, he struggles some days to walk due to an arthritis-like ache. His hematologist prescribed the medicine Celebrex (celecoxib) to help with inflammation, which decreases…

No One Is Perfect When Treating a Chronic Illness

Many times, when I look back at how I handled my sons’ hemophilia care, I quickly remember the poor choices I made. I ache over decisions that caused heartache, and allow them to capture my full attention. Too often, I fixate on how one decision affected life choices, often leading…

I Stand Beside My Son as He Battles Hemophilia

When my oldest son was 2 years old, he came up to me with a serious expression and said, “Dad, this monster slapped me right in the face.” I told him I had some monster spray in my room and would ensure that his room no longer contained any strange-looking…

It Takes a Village of Support to Raise My Son

About seven years ago, my youngest son experienced the worst of the worst regarding hemophilia. My boy missed most of his second-grade year — 128 of approximately 180 instructional days — because of continuous breakthrough bleeding episodes followed by extended hospital stays. Unfortunately, we could not get ahead of his…

Finding Pockets of Joy Amid the Commotion of Hemophilia

There are moments when dealing with hemophilia proves overwhelming and we lose ourselves in the fight to overcome the pain of breakthrough bleeding. My youngest son, affectionately called “MacDonald the Younger,” dealt with two target joints, or places where bleeding episodes occur repeatedly, prior to his current treatment. His…