Parenting
It’s easy to overlook the struggles that aren’t immediately visible, especially when it comes to health issues. My two children, for instance, battle hemophilia, a rare genetic disorder that prevents their blood from clotting properly, leading to severe internal bleeding and joint complications.
My youngest, Ethan, faced substantial challenges due to his condition, resulting in significant damage to his knee and ankle. Unlike most children with hemophilia, Ethan’s journey has been marked by extreme complications. For a year and a half, he was largely immobile, relying on a wheelchair for mobility. Occasionally, he could manage a few hesitant steps, but long distances were out of the question.
To manage his treatment, we frequently traveled from Santa Fe, New Mexico, to Denver. Each trip heightened my anxiety, particularly navigating through airports with a wheelchair in tow. As we made our way through security, the stares from fellow travelers were unending. It wasn’t just curious children; adults would often follow us with their eyes, making me feel self-conscious and frustrated. I wanted to confront them, asking, “Is there something wrong?”—with a sarcastic twist, of course.
On one occasion, as we reached the security checkpoint at Denver International Airport, Ethan looked up at me and innocently asked, “Mom, why are people looking at me?” My heart sank. Here was my brave son, strong beyond measure, now aware of the unkindness of others. I paused, knelt beside his wheelchair, and said, “Sweetheart, it’s because they see how amazing you are.”
To the untrained eye, Ethan may appear to be just another child in a wheelchair. But what they don’t see is the wear and tear on his joints, which resemble those of an older individual due to repeated internal bleeding. If they witnessed him attempting to walk, perhaps they would understand the pain he endures daily. Sadly, they don’t get that chance.
During another airport security encounter at Santa Fe’s Sunport, I mentioned to a TSA agent that Ethan could walk—albeit with great difficulty. Another agent overheard and scoffed loudly, “Look at what some people will do to board the plane early!” My heart dropped. I was stunned and felt the judgmental gazes of those around me. I could only imagine their thoughts: “What a hassle!”
Fortunately, Ethan didn’t catch the comment and was already through the screening area with his father. But as I reflect on that moment, I feel overwhelming regret for not standing up for my son and others who may appear “fine” on the surface yet are fighting invisible battles. Did this agent truly believe I’d manipulate the system? The protective mother within me was furious, wanting to shout, “He has hemophilia! Can’t you see the pain he endures?” Yet, I chose to remain silent, hoping to avoid further complications in an already stressful situation.
It’s been a while since that incident, but I often think about what I would say to that TSA agent if given the chance. I’d remind him that not all struggles are visible. Some illnesses are hidden beneath the surface, and before passing judgment on those who may need assistance, he should take a moment to consider the battles they face. A little empathy goes a long way.
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In summary, it’s vital to remember that appearances can be deceiving. Those who seem fine may be battling tremendous pain and challenges beneath the surface. Let’s strive for a world filled with understanding and compassion, recognizing the unseen struggles that many endure.
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