As we honor National Family Caregivers Month this November, I think back to what my wife, Cazandra, and I were told when our 20-year-old son, Caeleb, was born. Our oldest son, Julian, had been diagnosed with hemophilia 10 years earlier, and a friend in the bleeding disorders community who…
In the Twinkling of an Eye - a Column by Joe MacDonald
If I could change one thing about my parenting, I would have learned to manage my temper during my sons’ factor infusions. Julian and Caeleb are 10 years apart, but both live with hemophilia A and developed a fear of needles around age 6. My wife and I tried…
Long before our sons could advocate for themselves, my wife, Cazandra, and I spoke on their behalf. At the beginning of every school year, we met with the principal, school nurse, social worker, faculty, and other staff members who would work with them. We explained concerns related to their…
For years, I saw wheelchairs and other mobility devices as symbols of limitation — signs of everything a person could no longer do. Then my youngest son, Caeleb, needed a wheelchair due to complications of hemophilia, and I began to see it through his eyes. What I feared would…
When our sons were younger, my wife, Cazandra, and I struggled to balance our jobs, our relationship, and their very different needs. When our younger son, Caeleb, was between the ages of 5 and 8, complications from his hemophilia repeatedly knocked us to our knees. I often felt…
My youngest son was frequently hospitalized due to bleeding episodes brought on by hemophilia, and it often left me feeling trapped and stressed. I brought work projects with me, but the constant interruptions left me feeling powerless and unable to focus. My anxiety often soared. Caeleb picked up on my…
When my oldest son, Julian, was 6, he started a ritual whenever I traveled away from home: He selected a small stuffed animal from his collection and placed it in my suitcase. When I asked why he had given me the toy, he responded, “Because I don’t want you…
Last in a series. Read part one. Last week, I asked my oldest son, Julian, what he wished people outside the bleeding disorders community understood about hemophilia. He wished they would not treat him as though he lived in a protective bubble. He wanted independence and trust…
First in a series. This morning, my oldest son, Julian, 30, called me from Philadelphia, where he is living for two months before packing up his bags and moving again. He is a professional entertainer hoping to sing on Broadway one day. Currently, he’s on his first national tour for…
If I could go back in time, I would learn to control my anger sooner. I didn’t say unkind things or become physical, but my voice did get loud enough to frighten my children. After I regained my senses, I would punish myself for the panic I saw in…
