Even hemophilia can’t spoil sacred time with my son

Our week in Washington was full of conversation, adventure, and joy

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by Joe MacDonald |

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After I had spent a few days lobbying legislators in Washington, D.C., my youngest son, Caeleb, joined me for some much-needed time together. I met him at the airport to start our madcap adventures. He was in a wheelchair due to chronic pain from numerous spontaneous bleeding episodes in his right knee and ankle. But nothing could stop us — not even the complication of maneuvering on unpaved streets, steep inclines, or the D.C. Metro system.

Caeleb and I had five days to visit the city’s sites. I wanted him to see as much as possible. Due to time restrictions, we couldn’t visit everything, but we managed to see many things. We visited the Capitol Building, the White House, the U.S. Holocaust Memorial Museum, and many other incredible places. I clocked many miles walked on my phone, and with each footstep, I gave thanks for the sacred time we shared.

Perhaps my favorite moments occurred daily after all our sightseeing and successful navigation of the transportation system. We usually ate at nearby restaurants, and each night, we had a different culinary experience. I can honestly say that there are no bad meals in the city. Every dinner was a work of art.

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A night to remember

One night, we ate at a seafood restaurant and discussed Caeleb’s possibilities after he graduates from high school in two months. I looked into my son’s eyes and saw something I hadn’t seen in a long time: joy.

As we waited for our delicious shrimp and oysters, he said, “Dad, I have a good feeling about attending the University of New Mexico. The art classes look interesting, and I think my career choice is perfect for what they offer.”

He told me he wanted to be a graphic designer, focusing on animation. I told him, “This does not surprise me. You held a pencil and drew what you saw on paper for a long time. You never go anywhere without your sketchbook. This career is your passion. I say, go for it!”

As we ate the fantastic food, the tone became more serious, and he shared with me that he was a little anxious about the chronic pain in his foot and ankle. “What if it stops me from achieving my goals?”

I looked at him and reminded him that he’d been able to circumnavigate his pain by finding other means of getting around. “We just have to be creative,” I said. “You know, think outside the box. We are MacDonalds and know how to navigate a mountain of obstacles.”

I must admit that my mind started racing toward topics that needed to wait for another day. I grew angry at the thought that my son needed to focus on mobility issues and ways to alleviate pain. Why can’t he be like any other 18-year-old and simply worry about entering his preferred college? Why must hemophilia always be an unwelcome guest?

I ignored my inner dialogue and smiled at my son, now reaching manhood. “My son,” I said, “you are fearfully and wonderfully made. There is no obstacle too big to overcome. Remember that message as you continue your journey.”

The air seemed to lighten as our server brought us the most beautiful pieces of tres leches cake. We both took big bites, looked at each other, and almost started yelling shouts of praise in the restaurant. We laughed as we continued to enjoy the evening. I sat there, hoping to soak up all the joy and conversation. Part of me didn’t want the night to end. This moment was holy, set aside as something special.

As we returned home to New Mexico, we shared with my wife, Cazandra, that we’d had a wonderful trip. Caeleb and I talked about the miles we traveled and looked at each other as we raised our hands for a high-five. We made it through the obstacles and had a great time. Nothing, not even complications related to hemophilia, could hold us back.

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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