Taking time to rest and recharge is crucial for me as a caregiver

How self-care enables me to better support my sons with hemophilia

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by Joe MacDonald |

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Over the next few weeks, I’m taking a short sabbatical. I realized I needed time to regroup, rest, and renew my spirit. Little triggers that crept into my brain warned me I needed to care for myself. Failure to adhere to these warning signs often leaves me angry, frustrated, and depressed. I’ve learned that I’m at my best if I listen to my own advice and make self-care a significant part of my routine.

As a caregiver to two sons with hemophilia, experience has taught me that to provide for their needs, I must take care of my own. I know there are times when complications regarding treatment arise, and I find myself in crisis mode. It’s next to impossible to stop, refresh, and renew my soul when one of my sons is struggling with an internal bleeding episode.

Once, my youngest son, Caeleb, suffered an internal joint bleed that took several days to heal. I remember sitting beside his hospital bed, hoping my words would help relieve his horrible pain. I looked into his beautiful hazel eyes, trying to find a way to offer him relief from what he said felt like millions of needles piercing his skin. In his worst moments, he squeezed my hand and shouted as he felt another round of pain. My anxiety went through the roof, as I felt that I had nothing to offer him when he was writhing in agony.

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For me, nothing is worse than feeling helpless to relieve my son’s excruciating pain. In those moments, my frustration would become overwhelming, and the thought of spending a moment away from my boy felt impossible. Self-care had to wait for another day because my son needed me.

Eventually, the crisis passed, allowing me to find pockets of personal time to restore my soul. Sometimes, I can take only moments before hemophilia again raises its ugly head. Fortunately, my family is in a good place right now, and the opportunity to take a longer time for self-care gives me chances to work on projects that bring me joy.

Finding ways to renew my spirit

As I look forward to my sabbatical, I’ve set a goal to develop an idea for a book. Because I’ve yet to find time to focus on organizing my manuscript, my thoughts feel out of focus and go in a million directions. Reflecting on common themes in my writing may help suggest a clear structure moving forward. The chance to rest enables creativity to flow through me as I build on the foundation of my previous columns, blogs, poems, research, and other creative works.

I realized that I have to intentionally honor my sabbatical. To truly experience rest and renewal, I must be purposeful when mapping out my time. I ask myself, “How can I make the most of my time to unplug and recharge?” For me, it’s crucial to plan times to rest.

Sometimes it’s rough to disconnect from the world. Life happens, and demands on the precious commodity of time prevent me from experiencing moments of rest and renewal. If left to my devices, I often fill my days with varied chores and tasks. By the end of the day, I realize I did nothing to help create a sacred space for me to grow and find sanctuary. Busyness replaces rest, and renewal gives way to stress.

To create a meaningful space, I must proactively find moments of solitude and seek out life-giving, self-affirming opportunities.

When I take time to renew my spirit, I find a strength that carries me and replenishes my soul. I return to my life with new ways to battle the struggles often brought on by complications related to hemophilia. Ultimately, life is better for all of us when we take time to care for our souls. I plan to continue putting self-care in the top three things I need to do as I walk beside my two MacDonald men.

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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