The season of Lent helps remind me of my strengths as a caregiver

How the father of a son with hemophilia relies on hope despite adversity

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by Joe MacDonald |

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We’ve just entered the season of Lent. This particular time in the church calendar is the 40 days before Easter. The goal is to remember divine deliverance and to prepare our hearts and minds for the joy of Easter. As a pastor in the Christian tradition, I encourage parishioners to add meditative practices to their daily lives to recall ways that reflect deliverance from struggles. The Lenten season, while somber, allows us to celebrate the ways that we overcome adversity and turn our thoughts to hope.

Much like my Jewish brothers and sisters, I think there’s no separation between sacred and secular life. My practice reflects times of celebration over adversity, including hemophilia. Throughout Lent, I want to hold up the times when we overcame struggles and moved forward as a family. It’s important to remember times of effort, but it’s equally important to consider how strength allowed us to overcome many odds. Even in this melancholy season, hope must still make its presence known.

My family’s motto reads, “We are a family of hope.” Through every battle we fight against the effects of hemophilia, we maintain a sense of positive energy that sustains us through the darkest circumstances. So many times we’ve faced overwhelming medical issues, but we stood together and never gave up. Our strength lifts us from the worst cases and gives us wings for greatness.

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Faith as the Bedrock of Hope When Dealing With Hemophilia

I recall one event that almost knocked me to the floor. One terrible internal bleeding episode landed my younger son in the hospital. No matter what medical treatment his doctor tried, my boy did not respond favorably. Finally, a doctor suggested we give him another medication to help treat the overwhelming pain my son experienced. Unfortunately, the pain relief medicine proved too much, and my son faced the effects of an overdose.

As a father, I didn’t know how to help him. I stood and watched the medical team treat him with Narcan (naloxone) to help reverse the effects of the pain medication. My heart felt like it would beat out of my chest. The only thing I knew to do in that horrifying moment was to offer a silent prayer.

I made sure that my feelings of helplessness did not turn into hopelessness. I depended on the caregiver within me to help calm the parent that wanted to scream out in horror. In the end, my son recovered, and hope saved the day.

The opportunity to claim the title of caregiver to my sons is the best I have. My goal is to empower them to find their sources of power that propel them onward. Hopefully, my actions are an example for them to gather courage when needed. My life’s work should serve as an example of perseverance so that my boys may chart a course of faith and enlightenment.

As I start my journey through Lent, my experience with hope must serve as the foundation. In my life, I continue to face difficult circumstances. One day, I want to write a book about my struggles and how I overcame many obstacles. Yet the core and continuous thread that runs through any story I tell contains the belief that hope shows up in the most unexpected places. Hopefully, I’ll continue to call to mind the enduring power of optimism through a time of overwhelming circumstances.

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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