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.

Aiding Our Sons in Building Self-Esteem

In my experience, raising two children with a chronic illness includes the usual worries that parents and other primary caregivers often face. It also creates issues that directly address medical needs and concerns related to treatment. For instance, not every family deals with spontaneous bleeding into the joints. For…

The Perfect Gift for Our Hematology Hero

My wife and I were trying to find the perfect gift for one of our favorite people. We needed to find a bow tie, but not just an ordinary, humdrum kind. It must have a road map from one place to another. Our friend, who happened to be one of…

When Will You Teach Me to Ride a Bike?

Last week, I did something I never dreamed I would do: I taught “MacDonald the Younger” how to ride a bike. At 13, he is considered a senior statesman in our neighborhood. Other children learn at age 5 or 6 how to balance on two wheels and head down the…

How Hemophilia Care Evolution Has Changed My Family Dynamics

When my son “MacDonald the Older” took over his care, I celebrated his accomplishment. “MacDonald the Younger” would not reach independence until many years after his older brother did, but reducing oversight of infusing to one child proved liberating. Before the Younger’s independence, my wife and I still actively participated…

Finding Our Way Back

One issue that faces many families with chronic illnesses is lengthy hospitalizations. The entire household is affected by the disruption in schedule and routine. Life changes drastically for everyone involved. The child in the hospital must spend precious time away from regular activities and friends. Social interaction moves from…

The Demands of a Job vs. the Need for Healthcare

I work as a pastor in the United Methodist Church. One of the many challenges of participating in a denomination that calls ministers to move quite frequently in an itinerant system is the continuous upheaval regarding medical care. For those who live with chronic issues, picking up stakes and heading…

The World Is Changing for Hemophilia Care

The other day, I picked up “MacDonald the Younger” from hemophilia camp. I enjoyed the trip through the mountains. The air felt fresh as I grew anxious to see my son. I wanted to hear all about his camp experience. What friends did he see? Did he try the…

A Vocabulary I Never Knew

Living with a chronic bleeding disorder brings a whole new set of words into our vocabulary. Around my house, when it is time to infuse, we say, “Hey guys, its time to get liquored up.” While that may sound odd, our word choices help to remind us that each treatment…

I Give My Sons the Best I Have to Offer

I often wonder what my sons feel when they are in the middle of a bleeding episode. Both boys tell me that a bleed into a joint or muscle feels like needles constantly stabbing into the skin. The pain is unbearable and doesn’t let up until a medical clotting…