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.
Although my sons, now 15 and 24, are different as night and day, they both began asking questions about hemophilia at about age 5. I tackled the tough issues they wrestled with, always acknowledging that their problems contained merit. At 5 years old, they each asked the same question that…
I faced my old friend, the medical supplies boxes, still not believing the task ahead of me. I almost spoke to the six boxes stacked on top of one another. “I am sorry,” I wanted to say, “but we do not need you any longer. We must move on.” Each…
On Sunday mornings in my home, I usually watch “CBS Sunday Morning,” hosted by Jane Pauley. Last week, an interview caught my eye. The segment featured Dr. Jennifer Doudna, who won the Nobel Prize in chemistry in 2020 along with fellow researcher Emmanuelle Charpentier for developing…
Back in Texas in good ol’ 1996, when my first son came into the world, a nice, well put-together doctor entered our room. He introduced himself as Dr. Connelly, the pediatrician on call. He appeared very polite and had an effortless bedside manner. He let us know that our…
At every annual event sponsored by the National Hemophilia Foundation, a particular room is dedicated to remembering those who died from complications of hemophilia. In the 1980s and early ’90s, many people lost loved ones during a period that became known as the “hemophilia holocaust.” A staggering number…
When my first son was 6 months old, we experienced our initial reception into the world of hemophilia. Until that point, his bleeding disorder had not reared its ugly head. This was his first internal bleed into a joint (his ankle), and we prepared to find a vein to…
In past columns, I wrote about moments of absolute hopelessness — no more prevalent than the times when hemophilia reared its ugly head in my sons’ lives. There were many instances when powerlessness dominated my thinking as one of my sons screamed out in pain because he felt…
One thing that struck me over the head when I became a parent was an awareness that I bring my whole self to the table. When treating bleeds and other surprises, I show up with what I know — no more, no less. I cannot respond to my child beyond…
Many years ago, friends told me about a workshop they attended, which addressed newly diagnosed patients with bleeding disorders. As they talked about the class, I agreed with everything I heard until one of the facilitators said that with a new diagnosis comes a sense of mourning. “Yes,” I…
I often get caught up thinking about things I did not do for my sons, who have hemophilia. I worry about the many deficiencies I have, and how they affect my sons’ lives. Dealing with a bleeding disorder is more than enough to worry about, but do they feel…
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