Recalling a road trip’s moment of joy, despite living with hemophilia

Much has happened over the years, but I'm reminded to keep moving forward

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by Joe MacDonald |

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Some years back, my two sons packed their suitcases and Caeleb, the youngest, said, “All right, it’s time to go on a Daddy-and-son madcap adventure.”

My wife had a speaking engagement out of town, which meant the MacDonald boys were going to set out on their own, together on the open road. We climbed in the car with Julian, then 20, riding shotgun and 10-year-old Caeleb finding his place in the back seat.

Our destination was a college Julian hoped to attend because of its musical theater program. My son had one career goal — to sing on a Broadway stage — and he believed the faculty there might help him meet that objective. We knew the trip would be fun, whatever the outcome.

After driving for about eight hours, we found a hotel and bunked down for the night. I began to unpack and set up for the following day. We had another 10 hours of driving to go before we reached our destination. I took out the clotting factor Alphanate, the infusion supplies, and the 1-inch needle I used to access Caeleb’s port.

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Both my sons have a bleeding disorder, and to treat the problem during our trip, we had to access a vein with medication to initiate the clotting process. That meant remembering to pack all the medical supplies we needed so we didn’t run the risk of a severe internal bleeding episode. Packing for a trip could be overwhelming before our current medication, Hemlibra (emicizumab).

But my sons’ illness didn’t dominate that night. We had an incredible pillow fight, one that will go down in the record books. I remember their smiles as the sound of laughter filled the room. It was enough to make me momentarily forget about living with hemophilia and its symptoms and revel at having precious time to enjoy my boys. All that mattered was hearing them shout with joy as they ganged up on their dad.

As I reflect on that trip, I cannot help but think that my sons continue to be living examples that things are not always what they seem, and that sometimes things occur far outside our control. Needles, syringes, and Hemlibra continue to play a role in their lives, and our home looks like a small pharmaceutical company, but I’m reminded daily that there can still be joy amid having a chronic bleeding disorder.

Life moves on, despite the medical issues, and goals must lie before us so we have something to conquer. Julian performed an outstanding audition back then but chose to finish his degree at a school that offered him a better scholarship. Now 27, he’s finding his place in the world, and I’m proud of his tenacity in seeking his goals. Caeleb, now 17, seems to take life in stride and never meets a stranger. He makes me look like the biggest introvert on the planet. A significant feat, as those who know me know.

Throughout their journeys, they remind me to keep moving forward, never let an obstacle stand in my way, always let happiness abound. I continue to thank God for these amazing young men!

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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