Home for me is much more than a brick-and-mortar structure

Last week, I attended a clergy retreat at Sacramento Camp & Conference Center, in the southern mountains of New Mexico. We experienced clear blue skies and mild temperatures, as well as moments of self-reflection.

One day I hiked to the top of a mountain, standing in awe of the beautiful view of the campsite and surrounding area. The trees had begun to change colors, casting gorgeous hues of green, brown, yellow, and red leaves that painted the landscape. I looked to the heavens and whispered, “Good job, God!”

As I stood in those lovely surroundings, I thought of home. I pondered the significance of that word and how it implies security and familiarity. For those who navigate the world of chronic illness, it further suggests a feeling of contentment and dearly needed freedom from hospitals.

When we’re away from our safe spaces for long periods of time, our thoughts of returning home serve as a reminder that our current situation won’t last forever. At home, we’ll enjoy dinner around our table and other creature comforts that can only play out there.

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As I considered various implications of home, I thought of my youngest son, Caeleb. Now 17, my boy faced many health scares and complications in his younger years that were related to his hemophilia. Between kindergarten and second grade, he spent most of his time in a room on the sixth floor of the University of New Mexico Children’s Hospital, in the special pediatrics unit. I recalled the many nights he screamed in pain as medicine could not relieve what felt to him like sharp needles continuously piercing his skin. He suffered from internal bleeding episodes in his right knee and ankle.

As his caregiver, I felt helpless and turned to my wife, Cazandra, for comfort. “What can we do?” I asked her as we stood by, unable to make him better. Helplessness often proves too much for many of us who deal with chronic illnesses. I often felt like raising a white flag and offering some surrender if it would bring Caeleb relief.

In my darkest moments, I often thought, “I wish I were home.” My safe place had become a source of hope as my family sat by Caeleb’s hospital bed for nights that turned into weeks and months. I thought of a question from Psalms (137:4, AMP): “How can we sing the Lord’s song in a strange and foreign land?”

It’s impossible to fully relax in a hospital room when doctors, nurses, and others drop in at any time to take care of medical needs. Although those caring for my boy worked to help him overcome painful episodes of spontaneous bleeding, I still longed for my creature comforts and the steady rhythm of our home.

That place represented a goal, a place to rediscover normalcy. Sometimes, the need for routine overwhelmed me as I longed to reclaim my schedule. Some of the most uncomfortable moments involved the times we spent away from the predictability of the daily chores that make our house function. I missed waking up to get Caeleb to school, feeding my dogs, and returning home to prepare for work. While these tasks may seem mundane, I often yearned to finish my “honey do” list.

All these thoughts of home overwhelmed me as I observed the incredible Sacramento Mountains. I stood in awe not only of the view, but also of my family’s extraordinary resilience. The MacDonalds have continued to find strength in the home we’ve created. Our place of hope included one another and seldom referred to a brick-and-mortar structure. We find safe space in one another’s company because being together restores our souls.

I took one more look at the incredible view and started down to the camp. I smiled while witnessing the mountains as I gave thanks for the ties that bind my family together. We are a mighty stock, filled with love that overcomes the trials we face living with hemophilia and its complications.

I descended to the food hall to talk to the rest of my clergy friends with renewed hope. My greatest lesson of the day was realizing that my home exists in the MacDonalds who share my house. Their presence is even more remarkable than the grandeur of the mountains. In them, I find home.

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.