Undertaking a pilgrimage of faith in raising 2 sons with hemophilia
Looking for the sacred has helped me navigate our difficult journey
There’s a pilgrimage site less than 10 minutes from my home in central New Mexico. That site, El Cerro de Tomé (Tomé Hill), is a natural landmark that’s served El Camino Real travelers for centuries. People journey to the top of the hill, 400 feet above the Rio Grande flood plain, for personal and sacred reasons.
Tomé Hill is an especially popular site to climb as Holy Week — the week between Palm Sunday and Easter — approaches. Hundreds of people make the pilgrimage to the top, where they spend time in prayer and devotion to God at the foot of three crosses. Some people even walk 10 hours from their homes in Albuquerque to the top of the hill.
I cannot begin to imagine what it takes to walk that distance. It’s a journey I’m not sure I could physically manage. Yet when I consider the miles I’ve traveled over the years, there is a pilgrimage I undertake every day.
It’s the pilgrim’s journey of raising sons with hemophilia.
Finding the sacred in the journey
I’ve traveled a different path with each of my sons. Julian is 27 years old and hasn’t experienced many challenges or obstacles regarding his bleeding disorder. I’m grateful for his journey because I learned the basics of bleeding disorders as he grew.
My 18-year-old son, Caeleb, has faced more difficulties. Debilitating joint bleeds, loss of mobility, hundreds of infusions, many hospitalizations, and missed school are only a few of the complications he’s endured. When I look at Caeleb, who now towers over me, I see my little 2-year-old son walking the hospital halls, pulling his IV pole.
Nothing would stop him.
As Caeleb got older, his health took a downward turn because of the persistent bleeds he experienced. His pain is ever-present, and mobility is difficult. Caeleb is about to embark on his next chapter in life, yet he still struggles with his health.
All that may sound devastating to many, but my outlook is different. As a woman of faith, I work to find the sacred in the journey. I think back to when I couldn’t see hope in the next hour, much less the next day. It took some time, but I now consider every moment of every bleed and all the time spent healing on the couch sacred because God saw us through to the next day. Somehow, I held my faith close and made it through one breath at a time. Without my faith, I wouldn’t have gotten through the difficult times of living with hemophilia.
As Easter approaches and hundreds make their way to the crosses atop Tomé Hill, I’ll reminisce about our family’s journey. I’ll look at my grown sons and give thanks to God that they’re standing tall, even if Caeleb needs his wheelchair now and again. Without the struggles, the pain, and the uncertainty about what came next, my pilgrimage would look different.
I cannot change what’s happened to my sons, but I give thanks that we continue to climb hills together, one step at a time.
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.
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