Accommodations won’t keep us from enjoying a day at the museum

My youngest son, Caeleb, is home from college for spring break. He has no big trips to far-off hot spots planned. Instead, he’s in his room, enjoying the comfort of his bed.

Our fur babies, Laggie and Hildie, enjoy spending time with their favorite human. Caeleb’s love for art and family fills our home with warmth, and his joy in playing with the dogs highlights his caring nature. It is safe to say that all three, furry and human, radically enjoy each other’s company.

While Caeleb is with us this week, my wife and I hope to take him to some interesting places to do something out of the ordinary. El Paso, Texas, is about 40 miles from our house in Las Cruces, New Mexico. We hope to attend the El Paso Museum of Art to see a collection of paintings by the great Frida Kahlo. Caeleb’s love of art began at a young age, and he’s now majoring in graphic design.

Under most circumstances, a short trip to another city is no big deal. But because Caeleb lives with hemophilia and related complications, we must plan carefully so he can take in the beautiful exhibits that feed his soul.

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Allowing joy to overshadow anger

First, I must leave my anxiety at the door. Caeleb suffers from chronic pain due to excessive joint damage from internal bleeding. Walking long distances can be challenging, and he often requires mobility assistance and frequent breaks to rest his right knee and ankle.

In those moments, part of me tends to panic, as I feel helpless, unable to take his pain away. I keep telling myself, “He is 20. He shouldn’t require crutches or a wheelchair to walk around a museum.” I feel like a bad parent because I cannot solve his problem. The joy of spending time with my son turns to sorrow as he struggles ferociously.

However, I must remember to keep my cool, because appearing angry, anxious, or sad only makes the situation worse. I try to focus instead on Caeleb’s determined and resilient spirit.

My son is a talented young man who fearlessly attacks whatever issues come his way. His name comes from a Hebrew warrior who spoke with certainty, even when others said what they thought people wanted to hear. This biblical figure is rewarded for his character, attitude, and truthfulness.

Caeleb also knows what it’s like to thrive despite bad news. He persevered through many hospitalizations and horrible internal bleeding episodes in his right knee and ankle. He fought bravely and endured tough struggles against a formidable foe. His resilience serves as a reminder that even in hardship, strength can shine through. He never admitted defeat. Instead, he endured the pain, which felt like a thousand needles repeatedly penetrating his skin.

Perhaps I need to remember that my son claims victory over hemophilia by following his dreams. Yes, he may need walking aids at times, but that doesn’t mean he can’t live life to the fullest. My role as a parent is to encourage him to chase his dreams, even when pain makes its ugly presence known. I remind him that he is in charge of his own destiny, and supporting his aspirations gives him hope for the future.

Caeleb’s strength in adversity reminds me not to let the waves of doubt overwhelm me. I bring myself back to reality and focus on the most important thing: Today, my son is not in the hospital, and our biggest decision is when we will visit a museum. Who cares if we need to take our time and take frequent breaks? We still get to observe greatness. Beauty makes itself known to us whether we sit or stand. What matters is finding moments to acknowledge its presence.

My love for my amazing son replaces any heartache I feel. My soul shouts, “The MacDonalds are on our way to another adventure. Happy spring break!”

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.