Sharing My Family’s Journey Reminds Me of a Difficult Past

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by Joe MacDonald |

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My youngest son suffered his last joint bleed from hemophilia over seven years ago. Gone are the days when he could not walk, and a wheelchair was the most accessible way for him to get around at school and family outings.

I work at a church that knows my stinky son as a tall boy who moves as quickly as any of us. They weren’t around for the many years we struggled through bleeding episodes that never seemed to end. No one in my current workplace helped me navigate a schedule that included weeks of hospitalizations, in which I struggled to manage time and give the proper attention to my wife, older son, and parishioners. My memories reflect a life that no longer exists, yet still haunts me.

I share my experiences with others who provide care for chronically ill loved ones. When they are struggling to find peace in difficult moments, telling my story allows us to find a common thread. My memories remind others that they are not alone. Many of us know what it’s like to help our loved ones navigate life’s most challenging circumstances.

Together, we share our journeys and discover something that seems long forgotten: hope. Within each narrative, we find the most crucial part of healing.

This discovery can help remind us that hope endures through all things. Equipped with a mantra that demands we continue moving forward, we find that catalyst that propels us to discover the richness of freedom in our darkest times.

Life does not end during moments of struggle. The trick is to find moments of respite from the ravages of chronic illness.

And so, I share my family’s past with the members of my new faith community. I tell of the darkness, knowing that my story continues to evolve and that we must remember to hold on, for seasons change, and the light eventually comes our way.

Though I remember the horrible times of fear and anxiety, I know that my story did not end in the pit of gloom. Perhaps others need to hear my story to reaffirm a message of hope in the middle of chaos.

The truth is that our stories (the good, the bad, and the ugly) matter to entire communities. Together, we celebrate our triumphs over a long period of illness, but we also hold each other close when the darkness of illness captures us and holds us in its grip. We realize that we are not alone, enclosed in a vacuum. Those around us provide us with a safety net because we know that they struggle with the same issues.

As I sit and share my worst experiences, I find hope that my family is in a good place, where hospitalizations are in the rearview mirror. I share my experiences to offer promises that we have miles to go before we finish our journey. My life is a testament that one crisis does not define a whole life and that we must continue to push forward to discover the riches that lie ahead. We run a race of endurance, not a sprint. I share these things with new faces, hoping that my story enlightens all who hear.

Yes, I remember the terrible times when I tell my story, but I remind myself that I survived the darkest moments.


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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