One day, my youngest son, whom we affectionately call “MacDonald the Younger,” and I flew to a hemophilia conference. He could not wait to see old friends, and I could not wait to gather with my tribe and learn about advancements in treatments for those with bleeding disorders.
My son had limited mobility and could not walk long distances. At this point in his young life, he suffered constant hospitalizations due to internal bleeding in his joints. We found an incredibly careful balance with his treatment that allowed us to navigate the world in a wheelchair. He could not walk exceptionally long distances for fear of spontaneous bleeding into his knee and ankle joints.
The airplane ride to the event proved easy as we boarded the plane first to get “MacDonald the Younger” and the wheelchair placed safely in the baggage compartment. When we picked up our luggage, I felt a sigh of relief. Everything went smoothly, and nothing strange happened. We loaded up our rental car and headed toward the hotel. I expected the journey to the event to be a much bigger issue. We attended the meeting and had a wonderful time. I learned of different ways to handle stress and the possible ways hematologists planned to treat hemophilia soon.
All the information I heard seemed promising and proved exciting. This national meeting introduced me to the medication Hemlibra (emicizumab-kxwh). I did not realize my son would thrive thanks to the new treatment in a few short years.
With Hemlibra, we no longer infused a 1-inch needle into my boy’s chest every day. The medicine required a small subcutaneous injection into the thigh every two weeks. My son no longer needed a port-a-cath to receive nasty, long-needled infusions each morning. Standing at the meeting, I still had my doubts about Hemlibra. It sounded like a faraway dream.
When it came time to return home, my boy and I arrived at the airport, fully expecting the flight to be just as smooth as the first. To get through security more quickly, I usually let my son walk through and let security guards take the wheelchair. This time, I received a response that left me shocked. I asked “MacDonald the Younger” to get up and walk through security.
One of the guards looked at me and said, “If he doesn’t need the chair, then why do you have it? He can walk to the gate.”
My blood boiled over at the sound of the man’s voice. Another guard took over and asked me if I was well. I kept my temperature in check and thought that if I responded in another way, these people could refuse to allow us to board the plane.
I responded to the new guard, “What the other person does not know is that my son has a bleeding disorder known as hemophilia. He looks fine walking this short distance, but he cannot walk to the gate. Given his medical history, a long walk that we can do without a second thought would be impossible for my son.” That was about as nicely as I could answer his question. He kindly responded and let us go through the line.
I so desperately wanted to shake the other man and tell him, “You don’t understand (with a few unholy asterisks fitting in nicely). This is not easy for any of us. Who wants to worry about a wheelchair? I want my son to run and jump like everybody else his age, but it is not possible.” I wanted to express my frustration at needing to go into more depth than I cared to share in an airport security line. Just because you do not see a medical condition doesn’t mean it isn’t there.
“MacDonald the Younger” and I boarded the plane. The rest of our journey home proved smooth and easy-breezy. I needed to remember that one person should not represent every person associated with a particular group. Everyone else in security treated us well. I hope that the rude man never has to encounter the same issues we face daily.
Ultimately, I realized that forgiving those who do not know the whole story is the way to find comfort. Maybe, after hearing my struggle, he will treat the next family coming through the line with a little more 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 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.
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