Both of my children have hemophilia, a rare genetic disorder that hinders blood clotting and can lead to severe internal bleeding, particularly in the joints. My youngest son, Ethan, has faced significant challenges due to his condition, suffering complications that have severely affected his knee and ankle. Unlike many children with hemophilia, Ethan experienced complications that resulted in a loss of mobility for 18 months. He relies on a wheelchair but can manage to limp or hop for short distances. Recently, he has made progress and can walk with a slight limp, although he cannot cover long distances.
To manage Ethan’s health issues, we often traveled between Phoenix, Arizona, and Denver for treatment. Each trip brought a surge of anxiety, especially navigating airports with a wheelchair. Despite our efforts to maintain a low profile, we were met with constant stares. It wasn’t just children who looked; adults would often turn and follow our movements, which felt unsettling. There were moments I wanted to confront them and ask, “Is there a problem?” with a touch of sarcasm.
One day at the Denver airport security checkpoint, Ethan turned to me and asked, “Mom, why are people staring at me?” My heart ached. This child, who showed incredible resilience, was aware of the insensitivity around him. I paused, knelt beside him, and reassured him, “Son, it’s because they see how remarkable you truly are.”
From a distance, one might question why he uses a wheelchair. What isn’t apparent is the damage caused to his knee and ankle joints, which have suffered from repeated bleeding episodes. The protective tissue within his joints has been compromised, resulting in pain and limited movement. If people observed him attempting to walk, they might understand his struggles, but unfortunately, that often goes unseen.
On another occasion at the Albuquerque airport, I informed a TSA agent that Ethan could walk, albeit with difficulty. To my dismay, another TSA agent scoffed, saying, “The things people will do to get on the plane first! I can’t believe it!” He stormed off, muttering loudly to himself. I felt my heart drop as I sensed the judgment from those around me. I worried they were thinking I was slowing down the line. Thankfully, Ethan was already past the screening area with my husband and didn’t hear the unkind remark.
Reflecting on that incident, I realized how important it is to advocate for those who face invisible disabilities. I would tell that TSA agent: “Your eyes won’t always reveal the battles that someone is fighting. Many illnesses are not visible to the naked eye.” The next time you see someone in a wheelchair, using crutches, or accompanied by a therapy dog, take a moment to consider their challenges. Appreciate your health and think before passing judgment.
In conclusion, it’s essential to remember that physical appearance does not always correlate with a person’s internal struggles. If you’re interested in learning more about fertility and insemination options, this blog post offers valuable insights. Additionally, you might find this resource helpful for understanding procedures like IUI. Explore this at-home insemination kit for comprehensive support in your journey.
Keyphrase: Invisible Illness in Children
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