Sometimes We Should Admit When It’s Time to Throw in the Towel

Caregivers need to stop for self-care, and model it for those with rare diseases

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by Joe MacDonald |

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I do not give up. It’s in my DNA to find answers to questions, even if it takes a long time. I hope my sons, who both have hemophilia, inherit this characteristic of seeking out answers. I pray they have the strength to never accept defeat. I tell them that failure is not an option.

Several weeks ago, I faced a formidable foe in my determination to never throw in the towel. My youngest son, Caeleb, had pain so great that I took him to the emergency room of the University of New Mexico Hospital. The attending physician admitted him, and he remained there for four days. Finally, he left the hospital, confident that his new treatment plan could relieve him of chronic pain.

The deadline for my weekly column (“In the Twinkling of an Eye”) is Tuesday morning. As we left the hospital on Monday, I started thinking of a subject for my upcoming column. I couldn’t think of a thing. My mind went blank, and I panicked for a quick moment. Then, I calmed down, reassured that my deadline was Tuesday. I’d think of something to write in time to meet my responsibilities.

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Finding Time for Self-care When Caregiving and Parenting Collide

Unfortunately, whenever I tried to wrap my head around the subject of my next column, I drew a blank. In the years that I’ve been writing my column, I’ve prided myself on never missing a deadline. I started to beat myself up. The thought of surrendering to my son’s bleeding disorder made me sick. I teach my sons to never give up, press through the pain, and honor commitments.

As I moved closer to my deadline, something within me admitted that I needed to take a week off from writing. I realized that while we must endure pain, we must also recognize that sometimes it’s OK to raise a white flag and take time to breathe. The trauma of dealing with my son’s hospitalization proved too overwhelming. I needed to care for my spirit and let my column go for one week.

I realized that while maintaining a healthy work ethic is important, balancing the many roles I play in life sometimes requires moments of caring for my soul. For example, the immense toll that another hospitalization takes on me cannot be swept under a rug. At times, I must stop and deal with the feelings that come from a challenging situation. Sometimes, it’s necessary to admit that I hurt and need a break.

As one who manages the chaos of chronic illness, it’s crucial to remember that I must first help manage my sons’ needs. I must take the advice of a flight attendant and place the mask over myself first to help others. Attention to self-care is crucial and involves knowing when I need moments of respite. Sometimes, allowing myself precious time to reclaim my strength is good.

My experience taught me that my primary concern is my sons’ welfare. I must let go of unrealistic expectations to provide the best care possible. I must listen to my inner voice and respect it when it guides me to rest. Then, hopefully, I can model self-care in a way that empowers my boys. In the middle of uncertainty and fear, peace can make its presence known if I only take time to be still and hear my inner truth struggling to grab my attention.

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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