Family rituals keep us grounded amid the chaos of hemophilia

My alarm rings every day at 7 a.m. I get out of bed, brush my teeth, take my medications, and start my day. As the coffee maker begins to brew a fantastic cup of decaffeinated piñon coffee, I take my girls — my dogs, Laggie and Hildie — outside. I make their breakfast and water the plants on the porch until the dogs finish eating. I let my mighty powerhouses out to claim the backyard as their kingdom. This schedule, down to the exact order, is how I begin most of my days.

Getting up and letting the dogs run free takes about 15 minutes. But when this regimen doesn’t go as planned, I feel off-kilter. Things seem out of place as I catch up with the tasks on my daily agenda. Without my morning routine, I often end the day thinking that my productivity level has proven less than I’d hoped.

My ritual, or the practice of performing repetitive actions, helps me start and set the tone for the day. These first 15 minutes ground me in preparation for my everyday world, including the many tasks I must accomplish as a pastor to a worship community. I have a sense of purpose as I complete the first chores of the day. I leave the house feeling accomplished, even before I’ve sat down at my desk at church.

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When hemophilia challenges our family rituals

I think back to when my family experienced some of the roughest times with hemophilia, the condition that both of my sons have. When one of my boys was admitted to the University of New Mexico Hospital’s special pediatric unit due to a horrific internal joint bleed, a continental divide seemed to arise between the hospital and our home. During these times, we found ways to practice familiar rituals, even in the unfamiliar place.

If it was my turn to stay with my son, I called the house to ensure someone let my girls out, fed them, and watered the plants on the porch. I needed to know that, despite the chaos of a hospital stay, I had some connection to my usual rituals that I craved to finish.

Even when I was facing a new day in a strange place, a glimmer of light would make its presence known. I’d think, “We’re one day closer to successfully treating my son’s internal bleed. Soon, we’ll be able to practice our rituals in the loving space of our home.”

Living with a chronic illness can also change our daily rituals. Years ago, when my sons received their daily clotting agent through a port-a-cath, I adjusted my schedule to include their treatment. My wife and I infused our boys at the same time every morning, as we’d noticed that they responded better when everything went according to plan.

We all need rituals that give us a sense of security. One of my favorite television shows is “Touched by an Angel.” In one episode, titled “The Peacemaker,” a high school senior films his mother and father as they begin their day with their usual coffee ritual. He asks his mother why they do the same thing every morning, and she responds that the practice of rituals reminds them that better times will come.

So, when hemophilia raises its ugly head and my routine feels like a thing of the past, I discover ways to reclaim usual daily practices. In doing so, I’m better able to cope with complicated medical issues that many parents never have to experience. Amid the chaos of life with a bleeding disorder, I rely on rituals to restore hope in the darkest of situations.

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.