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.

Developing a Strong Work Ethic With Hemophilia

From early on, we find success by developing a strong work ethic. Some of us come by it naturally, while others learn the value of working hard and doing the best job they can do. I realized that discipline brought great rewards, both musically and academically. When I failed to…

Our Pets Teach Us the Darndest Things

My family loves dogs. My wife and I have never known married life without a beloved pet. They continue to bring us joy, while at the same time imparting valuable life lessons. Our pets teach us to care for something more than ourselves. Our puppies need us as much as…

How to Avoid the Shame and Blame Game

I will never forget the first time the Hemophilia Federation of America asked me to facilitate a discussion group for parents of the newly diagnosed, at the federation’s annual symposium. About 30 parents attended, each with their own issues regarding their children. I sat in my chair and quickly…

My Takeaways From This Year’s Bleeding Disorders Conference

Despite the challenges associated with holding a large conference online, the National Hemophilia Foundation did a fantastic job at this year’s Bleeding Disorders Conference by virtually presenting participants with essential information about treatments and future methods of living with bleeding disorders. Nothing will replace great friends getting together…

A Letter to My Sons

I remember the first time I put my hand in your hand. You seemed to smile out of a sense of familiarity. You knew me in a way that knocked me to my knees. Your tiny hand filled my palm with delicate fingers and fresh new strength. Your touch seemed…

National Hemophilia Conference Provides Hope for the Future

Saturday afternoon marked the opening of the virtual edition of the National Hemophilia Foundation’s Bleeding Disorders Conference. I immediately missed the in-person experience, meeting old friends, walking through the exhibits, and other benefits that come with traveling to another city. But I like the opportunity to hear great thinkers…

Our Virtual Connectedness

As we continue to practice social distancing, I find it exceedingly difficult to stay connected to brothers and sisters in the hemophilia community. I gain strength and hope from dear friends who struggle with medical issues like mine. Why then do I find it hard to take advantage of…

Beyond Diagnosis, We Found Community

I am the first person to insist that a diagnosis does not define my children. In my home, we never call our children hemophiliacs, rather we focus on the fact that they are human beings who have hemophilia. I never want my sons to think that their whole person is…

We Are the Experts of Our Own Stories

At times I struggle with documenting my journey as a caregiver for a loved one with a bleeding disorder. I can’t offer medical advice because I am not an expert. The most I can do is share my experiences and hope that something I write might speak to someone…