Walking the labyrinth of caregiving and finding God in every step
In this peaceful practice, I've found a link to my life with hemophilia
As a woman of faith, I look for God in various places. I experience God in a beautiful sunset, a phone call from a dear friend, or even in the middle of a struggle. Walking a labyrinth is one of my favorite places to connect with God.
A labyrinth is an ancient spiritual practice that many faith traditions use for prayer, contemplation, and spiritual centering. Even if you’re not affiliated with a religious denomination, they offer a way to practice meditation and reflection. Labyrinths are for everyone.
Many think a labyrinth is a maze, and it’s often defined as one. A maze, however, has multiple paths that branch off and may or may not lead to the center. Labyrinths tend to have a single, continuous path that leads to the center. This meditative practice is so important to me that I’m designing one for my backyard because it brings me comfort and peace.
Reflecting on a labyrinth’s power, I see its similarities with my life as a parent caregiver.
I’ve taken on these roles for my two sons with severe hemophilia with an inhibitor, and as a result I’ve experienced numerous emotions — fear, anxiety, frustration, and loneliness, for instance. In the early days of a hemophilia diagnosis, parent caregivers are faced with a future for their children that they didn’t expect. Even parents with a family history of hemophilia or another bleeding disorder aren’t always prepared for their child’s journey.
When my oldest son, Julian, was diagnosed with severe hemophilia A in 1996, my world shattered. At the time, I had no idea that this genetic bleeding disorder was in my family. Instead of reveling in the joy of my newborn son, I felt like no one in the world could feel the way I did. I had no clue what was in store for him, my husband, or me.
After learning how to care for Julian, my fear and anxiety began to be more manageable. I was teaching school, so I went to work each day and dropped him off at the babysitter. Afterward, I often looked at my fellow teachers and thought, “Do they know what I’m going through?”
It was a silent struggle that I carried with me while trying to maintain a sense of normalcy for my students, colleagues, and family. Each day, I balanced my professional responsibilities with the constant worry for Julian’s health, hoping and praying for the best while preparing for any unexpected bleeds or complications.
The isolation I felt didn’t leave me despite the busyness of being a new, working mother. My life seemed fraught with uncertainty and fear, yet I kept moving forward, step by step, guided by faith and determination to provide the best care for my son.
A salve for my worries
As the years passed, I became more adept at managing Julian’s condition. I found solace in the moments of peace and reflection that I felt when walking a labyrinth. The practice taught me that while the caregivers’ path is filled with twists and turns, it’s a continuous journey toward deeper understanding and acceptance.
While my newly found family through a bleeding disorder chapter gave great insight and support to my plight, I would’ve appreciated if those closest to me had asked how I was feeling.
So what does a person say to a friend whose child has a rare disorder? How about “How are you doing with Julian and hemophilia?” or “How do you feel?” There is no correct answer. You can listen and be present. Offer a hug and let them know they’re not alone on their journey. This interaction can give the parent caregivers the space they need to express their feelings. There is no right response.
In the labyrinth, I’m reminded that I’m never truly alone. God walks with me, providing guidance and comfort. Walking the labyrinth becomes a metaphor for my life, offering a space for prayer, contemplation, and the assurance that every step I take is part of a divine plan. Through this practice, I find the strength to continue caring for my sons, knowing that the labyrinth of life, with all its twists and turns, ultimately leads to a place of peace and spiritual fulfillment.
Reach out to a friend who is managing an illness with their child. You may not understand their experience, but the kindness and compassion you show when offering yourself can be exactly what’s needed.
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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