Complacency Is Out, and Hemophilia Is In

There was a time when I couldn’t make plans because hemophilia was the center of my life. Vacations were dreams, family outings were few and far between, and the mundane happenings of everyday life were nonexistent. There was no sense of complacency. Every waking moment was consumed with the bleeding disorder that wreaked havoc on my youngest son, Caeleb. His bleeding was out of control, and inhibitor complications often sent him to the hospital for days and weeks at a time.

I longed for complacency, for routine. I wanted nothing more than to send my son to school, allowing me to go to work, pick him up at the end of the day, cook dinner, and watch the news. I was not envisioning a trip to Europe. I just wanted to do what most people did each day. Also, I would’ve appreciated never receiving another call from the school nurse.

Living with a chronic illness often means forgoing ordinary, commonplace activities. Instead of those conventional doings, the chronically ill have doctors’ appointments, infusions, and trips to the hospital.

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However, there are seasons when an illness is under control, allowing families to live with a sense of normalcy. When a disorder such as hemophilia is at its worst, normalcy begins to look very different. I struggle with “normal” because I am not sure that normal truly exists. Normal looks different for everyone.

For a long time, normal included:

• • At least 10 large boxes of factor and supplies delivered monthly.
  • Infusing Caeleb daily with at least 60 cubic centimeters of factor.
  • Knowing the names of the hospital staff, nurses, technicians, housekeeping, etc.
  • Having Caeleb admitted to the hospital at least monthly.

This list is composed of things most people cannot understand. Most people live unaffected by illness, or they are affected minimally. When Caeleb’s treatment changed, life improved for not only him, but also our entire family.

By 2016, hemophilia had found a new place in our family — at the periphery of our world, which I never dreamed was possible. We had complacency. But now, hemophilia is returning to the center. With Caeleb’s severe inhibitor complications, the damage he endured years ago is beginning to make a more significant impact on his health.

My calendar is filling up again with appointments with doctors working to find relief for Caeleb’s pain. Physical therapy is a must, so making time to take him every two weeks is a commitment, as the hospital is a 40-minute drive. And Caeleb’s mental health is of the utmost importance. Appointments with his therapist also take time, but it is time well spent.

The hemophilia season in my home is changing. I am actively paying more attention to Caeleb’s bleeding disorder. I pray it is not a long season, but I do something meaningful with each appointment.

I give thanks for my son’s health. Yes, he has endured a great deal of pain and suffering, but he is doing well compared with the difficult years. Complacency doesn’t rule in my family, and that is good. But I am counting the days until the season changes again, putting hemophilia at the edge of my world.

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.