Hemophilia, pecan trees, and a lesson about being on autopilot

In my work as a hospice chaplain, I take the same routes when I drive to patients’ homes, assisted living facilities, or hospitals.

Without thinking about changing lanes or adjusting my speed, my mind settles into autopilot, and I often arrive at my destination without realizing how far I’ve driven. Accompanied by the latest memoir on Audible, a recent episode of the Armchair Expert podcast, or the latest Mammoth album blaring, my mind is far away from the actual drive. I get lost in the stories that transport me to places around the world, the podcast conversations that make me laugh out loud, or the bass and guitar vibrations that make me feel like I’m at a rock concert.

It’s the sameness of it that allows me to zone out; the drive being so regular and routine helps put me on autopilot.

To get to an assisted living facility on the outskirts of town, I drive through a pecan orchard. I often never pay much attention to the trees that line the road on both sides, but a recent drive was different. The leaves glistened in the sunlight as they turned from their deep, golden hues to brown before eventually falling to the ground. It was a beauty I would have likely missed on autopilot.

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A reminder of times past

The sight of it, a sign of a changing season, reminded me of my journey raising two sons with hemophilia and how the experience helped shape me.

When Julian, my oldest son, was a toddler, hemophilia frightened me. I would ask: Would I notice a joint bleed? Would I know what to do? But once the first bleed happened, I understood that hemophilia could be woven into our lives, which helped to transform me into a more resilient and compassionate person.

Accessing Julian’s port to infuse three times a week became as routine as brushing teeth. I woke up each morning, started the coffee, and laid out supplies and factor on the kitchen table. My thoughts were about the day ahead, not the order in which I arranged each thing.

Washing my hands, opening and unfolding the sterile gloves, mixing the factor, all automatic tasks now built into muscle memory, and no longer a process my husband and I thought we would never master. We became two schoolteachers with no clinical training, infusing our son without hesitation and without fear.

Managing my youngest son’s condition was more difficult because his treatment and infusion methods changed, as did the types and amounts of factor. When Caeleb was 2 and a busy toddler, his infusions had to be administered through his port via a syringe pump. This meant having him sit still for at least 45 minutes at a time.

But eventually, even this became routine. And even when Caeleb was hospitalized during the most challenging years with an inhibitor, we made our time there normal to us. At the start of each hospital admission, I set up the creature comforts —  special pillowcases and pillows, snacks and Legos, and tea for mom and dad — to make our sterile environment cozy. Getting ready for each hospitalization became a part of life as common as waking up in the morning.

Driving through the orchard, watching the leaves shimmer and fall, I came to understand something that brought me peace. Much of my life as a mother, advocate, and chaplain has been shaped by routines that once seemed impossible. These impossible things became the path I walk without stumbling.

And just like the pecan trees that lined the road, there is beauty in those patterns. Even when I am on autopilot and the days grow heavy, the journey continues to shape me in ways I only notice when I slow down long enough to look.

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.