How my experience as a hemophilia parent has led to a new career path
Raising sons with a rare disease has helped me finally find my calling
I recently bumped into a former colleague at the grocery store. We hadn’t seen each other in several years and enjoyed catching up. (Yes, I was the annoying shopper blocking the aisle.) We had worked together in the healthcare industry, the last place I ever expected to be employed. Working as a patient advocate and marketing manager was never my plan.
In my first career, I was a middle school band director. My passion for music led me to the classroom, where I expected to stay until I retired. But after my first son, Julian, was born in 1996 and diagnosed with severe hemophilia A, my life changed in ways I never imagined.
I immersed myself in the bleeding disorders community. Hearing stories from other hemophilia families helped me find hope and come to grips with raising a child with a severe condition. As I became more involved and educated, an opportunity to work with families in the bleeding disorders community found me.
During my years in healthcare, I gave birth to my second son, Caeleb, in 2006. Also diagnosed with severe hemophilia A, he developed an inhibitor that wreaked havoc on our entire family, as every possible complication seemed to surface. Hospitals, infusions, ports, PTSD, severe pain, damaged joints, and fear became part of our lives. I’m grateful I was working in healthcare, as my team was incredibly supportive and compassionate.
After 13 years in healthcare, my job came to an end. With Caeleb’s health much improved, I began another leg of my journey of wanting to make a difference in the world. I answered my spiritual calling and went to seminary. After graduation, I began pastoring a church. I often ask myself how a good Catholic girl became a United Methodist pastor in the desert of New Mexico.
Pastoring has been a tremendous gift. But there was still something tugging at my heart.
Bringing it all together in my new career
Teaching and working in the healthcare setting gave me tremendous skills. With a Master of Divinity in hand and a path to ordination in process, I stand amazed at how my gifts and calling have come together. I’m now serving as a hospice chaplain. I feel blessed to spend sacred time with families at the end of a loved one’s life.
The years that Caeleb was in and out of the hospital gave me a new compassion for the sick. I’ve witnessed children with rare diseases and chronic conditions spend days, weeks, and months in the hospital. Those of us who were regular visitors all had something in common: Hope seemed lost.
Time after time, I’d stand with another parent in the wee hours of the morning as they poured out their heart, describing their pain. We didn’t need to share a diagnosis. Anyone with children in pain understands the journey.
Those parents I met in the hospital corridors never shared their names with me, nor did I share mine with them. Yet we knew each other in a uniquely and painfully intimate way.
The act of listening and praying for others is what has pulled me into my new career as a chaplain. I’m grateful for the moments of sacredness as I stand by families and help them in their grief.
Had it not been for the medical challenges I encountered with my sons, I may never have found my true calling.
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.
About the Author
Comments