Acts of love are my family’s foundation in life with hemophilia

Like brushstrokes on a painting, each small action makes a difference

Joe MacDonald avatar

by Joe MacDonald |

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If there’s one thing that moves me to tears, it’s sharing the love I have for my sons. I think of the million and one directions that once lay before me and how I chose to follow my heart, marry the love and joy of my life, and raise children.

Little did my wife, Cazandra, and I know we’d raise two boys with hemophilia. In many ways, the diagnoses of their chronic bleeding disorders only made our relationship more vital as we committed ourselves to finding ways to improve their quality of life.

Even through the most challenging battles with hemophilia, I’ve kept a critical principle as my guiding star: My sons, Caeleb and Julian, need a solid foundation of love and support. They need to know that Cazandra and I cherish them above everything else and that our family is a source of hope. Medication may come and go, but the mental assuredness that we stand by them in the darkest times gives them the strength to overcome any adversity they face.

I equate our home to that of the splendid painting by French artist Georges Seurat, “A Sunday Afternoon on the Island of La Grande Jatte.” When I look at the painting from a distance, it’s a pretty work of art that captures my attention with its colors and size. When I move closer, I discover the image is a culmination of little dots of color that form the more outstanding work. Each brushstroke is purposefully and carefully placed in the right spot to create a masterpiece.

Our life is much like the painting. Looking at life from a distance reveals a wonderful picture, but I must look at each dot representing each act of love to understand the true beauty of the work.

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A foundation of love

I think of the times when my boys needed acts of love as they struggled with infusions and fear of needles. I looked into their distressed eyes and tried to comfort them, assuring them the darkness would pass.

Each brushstroke represents a moment when we spoke words of kindness and hope that brought us closer as a family. Every dot on our canvas contributes to the complete painting. Remove one speck, and the work changes. It’s up to all four of us to fill out the beauty of our home.

My wife and I started the work, and Julian and Caeleb learned how to paint from our example. Over time, their contributions grew and shaped the work uniquely. Without their help, we couldn’t produce the same art; we need our children’s participation in structuring the canvas of love as much as they need ours. Together, we create an incredible tapestry of life that energizes and restores our hearts.

Hemophilia continues to play a significant role in our lives, and we must pay attention to our sons’ medical needs. When they face difficult circumstances, such as internal bleeding episodes or chronic pain because of complications related to their disorders, we must be diligent and provide ways to treat their issues. Most importantly, the foundation of whatever we do must be love.

Failure to reinforce their sense of security and well-being invites negative assumptions to creep in. If we’re not careful, we can do more damage psychologically than any bleeding episode they experience. Love must be the source of strength that keeps our boys moving forward. What we teach Julian and Caeleb — especially about how to live in the world — is the most crucial responsibility Cazandra and I share.

In his poem “The Road Not Taken,” Robert Frost writes, “Two roads diverged in a wood, and I— / I took the one less traveled by, / And that has made all the difference.” These words sum up my story, as I took the journey I thought was best.

My path in life continues to bring me joy and hope, even with hemophilia as an unwelcome guest. Next to my wife, Julian and Caeleb are the best things to ever happen to me. They continue to make me healthier and richer in spirit, driving me to do my best work in the home. And that, my friends, has made all the difference.

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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