Mr. Man started coughing on Friday and grew much worse by Saturday. My boy struggled with flu-like symptoms all weekend. We thought that by giving him allergy meds and cough suppressants, he would recover and be well for school on Monday. No such luck. The medicines wouldn’t work,…
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Joe MacDonald, whose two sons have severe hemophilia A, writes about living with the condition. He emphasizes helping children define themselves beyond their diagnosis and notes that modern care has dramatically improved the quality of life for those with bleeding disorders.
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My oldest son, Julian, was 10 years old, when we first saw the musical “Wicked” onstage. Our family’s love for live theater is a bond we cherish. As we watched and listened, I heard a lyric that made me shudder: “Unlimited. My future…
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…
Thank goodness for the great friendships that we forge along the way. Those of us who live with chronic illnesses learn the most about caring for our loved ones from those who are in our communities. While teaming with medical staff is crucial to the diagnosis and treatment…
About a third of European and North American hemophilia patients are overweight or obese, which is associated with increased joint dysfunction and chronic pain, according to a recent review study. The review, “Obesity in the global haemophilia population: prevalence, implications and expert opinions for weight management,”…
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…
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…
Last Sunday, my oldest son came to town for a photoshoot. He hopes to build a strong website presence so that directors and casting agents consider him for future projects in musical theater. We made plans to eat lunch before meeting with the photographer. My youngest son joined me, and…
I will never forget the night I was ordained as an elder in full connection in the United Methodist Church. We were about three and a half hours away from home at a church in the small town of Clovis, New Mexico. My ordination took place at the close…
Some years ago, when my youngest son, “MacDonald the Younger,” was about 7, he had an internal bleed into his right knee just before Thanksgiving. I was scheduled to lead a “Thanks Living” service that Tuesday, but we quickly realized we would be celebrating the holiday in a hospital…