Museum Day Brings a Grim Reminder of My Son’s Pain

Joe MacDonald avatar

by Joe MacDonald |

Share this article:

Share article via email
chronic pain in children | Hemophilia News Today | Main graphic for column titled

As summer begins, the MacDonald family continues a great tradition of visiting a local museum every Friday. We started at least 12 years ago when my oldest son, Julian, graduated middle school. Caeleb, my youngest boy, continues our special ritual and looks forward to exploring the many things that life offers in good ole New Mexico.

It warms my heart to know that our family customs play a significant role in my sons’ lives. The most important part is reconnecting through quality time spent together. There are no worries about homework or other stressors. Our time allows us to laugh and enjoy one another’s company. We fly free in the hot summer months.

Last Friday, Caeleb and I visited the Albuquerque Museum. We made our way through the different cultures represented and the beautiful creations from many different periods of art. Some works that caught my eye included the early Spanish settlers’ ornate paintings. Caeleb and I couldn’t believe that many of those settling in the area carried large amounts of wealth.

Recommended Reading
hemophilia B gene therapy | Hemophilia News Today | illustration of woman with megaphone

FDA Lifts Hold on Phase 3 Trial of Gene Therapy SB-525 for Hem A

As we continued our walk through the museum, I started to feel sorry for my boy because I could tell he had some pain stemming from his hemophilia symptoms. He used his cane to help him move about the space. He needed to sit and take a break from putting pressure on his knees several times. I wanted to deny that the pain was terrible, but I knew Caeleb felt uncomfortable. Secretly, I thought, “If we just keep moving, everything will be fine.”

The old feeling of powerlessness returned to me, and I wanted to shove it out of my way. I wanted to fix him, but I couldn’t do a blasted thing to help my struggling boy. I kept wondering, “What in the world can I do for him?”

Finally, as I turned to him, I realized that there was only one thing I could do. I took a seat on the bench right next to my wonderful son. Maybe I couldn’t solve the problem, but I could acknowledge his struggle and sit with him.

I calmed my spirit and started talking about life’s issues with Caeleb. At one point, he apologized for slowing us down. I told him not to even think of it. He couldn’t help it if his knee didn’t want to cooperate. What mattered was that he and I spent time together. As a result, he would defeat this enemy, and his knee would grow stronger.

As a parent, it hurts me down to the very core of my being to see my children struggle with chronic pain. My initial response is to fix the problem, not to simply accept the hurt.

As we shared time, I hoped that the moment counted. Instead, I grew resentful because my son’s illness proved an incomparable foe. I wanted to shout at this unseen opponent because my boy had suffered enough. I felt like crying to the rooftops, “Let go of my son!” Unfortunately, my ranting proved useless. Caeleb hurt, and we just had to deal with how he felt.

As the war raged on in my head, I realized that my son felt gratitude that we continued our yearly tradition. All the thoughts concerning his pain came from my head. He needed time to take in the view and rejuvenate his body. He felt calm, so why couldn’t I? The most important thing about the day was our appreciation for each other’s company, not the pain.

We took our time and moved at a snail’s pace through the museum. I felt lighter, my anger and resentment fading as Caeleb and I laughed through the Baroque, Impressionist, and Neoclassicist exhibits. My boy and I took our steps together, appreciating the art and the laughs we shared.

Though pain tried to overwhelm my son, he wouldn’t let himself lose to an unseen enemy. So we walked on, celebrating Museum Friday.

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.


Leave a comment

Fill in the required fields to post. Your email address will not be published.