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.
A few years ago, “MacDonald the Younger,” his mom, and I went to his yearly checkup with the Hemophilia Treatment Center to review our road map (healthcare chart), report on activities, and make sure that he was taking the correct dose of product for his height and…
February 2014 was a significant time in the life of my family. For years we saw our younger son regularly suffer bleed after bleed. He suffered from an inhibitor and an allergy to factor. Nothing seemed to help. We felt lost and unsure about how to continue seeking…
My wife and I learned early to be careful when discussing the struggles we share in caregiving. Sometimes we get tired and want to complain, but we must remember that our children hear and see us. If we say something in total frustration, our children might blame themselves…
So, we are in the car. Everyone is in their respective seats. We are all looking forward to our vacation. The car is filled with suitcases and excitement. Then, I hear the dreaded sentence from my youngest boy: “Daddy, my leg hurts.” My wife and I look at…
Every family speaks their own language. Mine certainly does. It is like a secret code that is unbreakable outside of our house, used to inform family members how we feel about an issue or event. It is done so subtly that no one else is aware of the information…
In past columns, I discussed my frustrations when anger rears its ugly head out of the shadows of my consciousness and takes hold of me. It isn’t pretty, nor is it the best choice to make. I wasn’t prepared to handle the overwhelming emotions that came over…
This week, we will consult with the surgeon who will have placed and removed six of my son’s seven port-a-caths. There will not be an eighth foreign object in “MacDonald the Younger’s” body, as it will not see port number eight. His treatment does not require access, and…
February 2014 proved to host the last bleed “MacDonald the Younger” faced thus far. The treatment plan created by our Hemophilia Treatment Center worked like a charm, and in the twinkling of an eye, the storm subsided and our quality of life improved drastically. What we didn’t…
My youngest son, wife, and I just returned from an appointment with our hematologist concerning plans for treatment. In the twinkling of an eye, our worlds changed. We will move to a new procedure requiring an injection given every two weeks. How could this be? Wasn’t it…
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…
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