Remembering Special Events That Brought Us Joy

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by Joe MacDonald |

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This week, we celebrate Balloon Fiesta in Albuquerque, New Mexico. Nearly 600 hot air balloons fly overhead while we stand in the grass, looking up at the beautiful sight.

I cannot help but think back to when my youngest son was 8 years old and unable to walk. We had gone to the festival because we wanted to celebrate the beginning of fall and teach our boy that hemophilia shouldn’t limit opportunities.

My young son could not walk due to continuous internal bleeding episodes in his right ankle and knee. Limited mobility necessitated a wheelchair for my boy. My heart hurt as I saw the ravages of hemophilia attack my son, offering no mercy. I felt helpless, as I couldn’t do anything to stop the pain he was experiencing. I silently held my stinky boy’s hand and thought, “I have to find a way to help him discover joy, even during this challenging time.”

That year, with Balloon Fiesta looming, my wife and I decided to take my son to the event, even though we’d have to maneuver a wheelchair through the grass. Our mission was to provide a semblance of normalcy amid the chaos of his bleeding disorder. With his pain diminished, we maneuvered through the rough terrain of the field where balloons launched. I sometimes carried my stinky boy piggyback to ease mobility.

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Finding Pockets of Joy Amid the Commotion of Hemophilia

As I walked with him on my back, I made a game of moving through the grass, often playing the role of a horse in full gallop. We stopped at the baskets of ballooners to ask questions about flying without an engine, aviation, and wind. We turned a challenging event into something enjoyable, and for a moment, we forgot about mobility issues or even hemophilia. My family laughed together, giving thanks for one another’s company, refusing to allow anything to hold us back from enjoying the festivities.

Living with a chronic bleeding disorder creates unique challenges for a family. One minute, everything is flowing along without any hint of illness, and at a turn of a dime, an internal bleed can knock us to our knees. In the darkest of moments, we must find pockets of respite to encourage and strengthen our spirits.

My son is many years older now, but every time Balloon Fiesta is celebrated in October, we think back to the fun we shared and cannot believe the obstacles we’ve overcome in dealing with hemophilia. I admire my son’s strength and my wife’s determination to move forward, regardless of a nasty bleeding disorder. We MacDonald folk stand up in the face of adversity, refusing to let anything get in our way.

I hold fast to one of my favorite lines in the Hebrew Bible taken from Psalm 139: “I am fearfully and wonderfully made.” This Scripture passage rings true as a mantra for my life’s work.

Finding joy with hemophilia | Hemophilia News Today | Photo of a rainbow hot air balloon

(Photo by Joe MacDonald)

I took this picture as my family looked up at a beautiful sky filled with balloons. It reminds me to raise my eyes to the heavens when struggles overwhelm us. Sometimes, we etch photos in the depths of our minds so that we may recall moments of majesty to help us continue forward during tough times. Soulful jolts of memories may be what we need to survive the toughest of circumstances.

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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 Services, and are intended to spark discussion about issues pertaining to hemophilia.

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