Encountering people who don’t understand my son’s hemophilia

Many years ago, my family attended the National Bleeding Disorders Foundation’s Bleeding Disorders Conference. My youngest son, Caeleb, was 8 at the time. Due to his hemophilia, he experienced numerous internal bleeding episodes as a child, making it impossible for him to walk long distances. We brought a wheelchair to help prevent such episodes and ensure he could participate fully. Without mobility assistance, we could not have attended the event.

While traveling to the event, we didn’t experience any issues with airport security or boarding. We were grateful we brought the wheelchair with us as we maneuvered through airports, a large convention hall, and a huge hotel complex. Caeleb had a wonderful time at the conference, meeting kids his own age who also struggled with bleeding disorders and used mobility aids. No one questioned why he couldn’t walk long distances. They seemed to understand.

Attending the event proved helpful to my wife, Caz, and me, as we learned crucial information and networked with old and new friends. We didn’t worry about our son. He had the time of his life and never had to explain why he used a wheelchair. It was a safe environment.

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After the conference, we arrived at the airport and went to the security station. When we got to the screening area, I told my son to get out of the chair and walk the short distance through security, as he had done at the first airport. Everything was going according to plan until a security guard stopped us and asked about the wheelchair. I explained that my son couldn’t walk long distances without assistance. He looked at me and said, “That is ridiculous. He is walking just fine.”

I could feel my anger rising, but I took a deep breath and said, “Sir, you don’t understand. He cannot walk all the way to the gate. He has a bleeding disorder.”

Luckily, another agent came up and told the security guard he would take over. I couldn’t believe this was happening to us. I explained our situation again, and the second agent moved us through the line without a single question. I thanked him for his kindness, and as Caeleb sat back down in the wheelchair, I caught the first security guard’s eye. I wanted to lash out, but I kept my cool. We needed to get home, and if I caused too much of a scene, they could remove me from the airport.

But what I wanted to say was, “You don’t understand my son’s struggles. There are no visible signs that anything is wrong, but you can’t imagine the kind of pain he experiences during an internal joint bleed. He describes it as needles piercing his skin repeatedly, and it does not stop.

“You don’t know how difficult it is to stop internal bleeding. You see, sir, my son not only has hemophilia but also a high-titer inhibitor that makes his treatment less effective. Because of this, my son must use a bypassing agent to help control his bleeding episodes. Unfortunately, these are less powerful than other hemophilia medications, and relief can take days or weeks. Meanwhile, my son endures severe pain.”

As my family boarded the plane, sorrow overwhelmed my anger. I mourned for my boy, who couldn’t do something that I took for granted. I felt like I had failed Caeleb because I couldn’t shield him from people who didn’t understand his condition. My job was to protect him, and I was unsuccessful.

Caz and I sat on either side of Caeleb on our flight back home. I asked him, “Did you have a good time, son?” He said he did.

“What was your favorite part of the conference?” I asked.

“Spending time with my friends,” he replied. “Some of my friends had wheelchairs, too. We raced and had a good time. I can’t wait to come back next year.”

I leaned my head back on my seat. Yes, the security experience was horrible, but my son enjoyed himself at the event. That should be my litmus test for the success of our trip. It shouldn’t be based on someone else’s inability to show compassion when they don’t understand the situation. I wish the man, and others like him, could remember that not everyone is blessed with the same opportunities. We make do with what we have and try to make our world a little better by offering one another compassion.

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 consult your physician or another qualified healthcare 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.