You don’t know the whole story unless you live in the house

Acknowledging our unique experiences is the first step toward understanding

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by Joe MacDonald |

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Last week, I attended an alumni meeting for the Austin Presbyterian Theological Seminary in Texas, where I earned my doctor of ministry degree. During my free time, I walked around the University of Texas campus and couldn’t help feeling the energy from all the students who moved like ants as they raced to their classes. I caught snatches of conversations as people passed by. I imagined many discussed the homework assignment a professor had the nerve to give or a relationship that had hit a rough patch.

But of course, I had no idea what was really going on in any of their lives.

That led me to think about the bleeding disorders community and how we gather at annual meetings. We walk past one another, putting our best face forward to prove that our treatments are helping. But the truth is that I can put up a great front and make the world believe all is well when, in reality, walls are tumbling down around me. No one can see my family’s struggles as we maneuver through the world.

Moments of pain

I try to tell people about the times when Caeleb, my youngest son, screamed in pain as we attempted to treat his internal bleeding episodes, but words can’t fully capture those moments of struggle in the hospital. I can’t describe what it was like to be a father standing helplessly by my son’s bed, hoping that relief may soon come. It’s difficult to explain how, when I looked into my wife’s eyes, we were able to share volumes about our frustration and pain without saying a single word.

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The lived experience dwells on a different plane than the written or spoken word, especially when it comes to a child’s health complications. No one can truly know how a caregiver feels when an emergency sets off a chain of events that hold the heart and soul hostage.

As a child, my oldest son, Julian, struggled so much with infusions that either my wife or I often had to hold him down. I often found a vein once he was lying on the floor, exhausted from the terror that overwhelmed him. It’s difficult to share the anxiety and fear that overcame us as we fought to do the next right thing.

Moments of celebration

Of course, we’ve also encountered unique, positive experiences. Along our path, my wife and I celebrated many joys as our children grew and new innovative products came on the market, and we found helpful ways to manage stress.

One of the most significant breakthroughs in our house came from a conversation with a hematologist. He suggested that we form a team for Caeleb and work together to find a holistic road map to treatment. I remember feeling like a load had been taken off my shoulders as I realized we shared a common goal: improving my son’s care and welfare. My lived experience of being released from frustration and buoyed by hope can never find fullness in words because it was holy, set apart.

Julian’s graduation from the heartache of constant infusions happened of his own volition. One morning, he met me at the dining table to start our usual school-day routine by infusing. The process had always started with my son pulling his hand back from the needle until my wife and I found a way to keep him still enough to stick a needle in a vein.

But this day proved different as he held his hand still. I kept waiting for the battle to begin, but nothing happened. After we finished, I asked, “Buddy, I’m just curious, but why did you stay still?”

He replied, “Dad, third graders don’t move when they get infused.”

I acknowledged his astute observation. After that, he never fought during treatment. The relief that my wife and I felt as our sorrow turned to joy can’t be captured by words.

When I see a crowd of people, like students on the University of Texas campus or families at national bleeding disorder events, I acknowledge that to know someone, I must walk a mile in their shoes. We have no idea what feelings come up for those struggling in our rare disease community. We can affirm that each person deals with chronic illness in their own way and that one size does not fit all. In a crowd of thousands, each person has his or her own story, experienced in unique ways.

We hope we find redemption and healing at the heart of our journey through the world of chronic illness.

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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