Learning to pause and remember when the miraculous becomes routine
I'm in less pain now than I was as a child, and that's something to be grateful for
Written by |
“Mom, I want to visit somewhere famous!”
“Sweetie,” I replied to my youngest child, “We live in one of the most famous cities in the world.”
Exasperated, she chirped back, “But it doesn’t feel famous.”
A few months later, our family took a cruise. We started in Genoa, Italy, sailed to Spain, and eventually docked in Rome. Disembarking a day early, we would have time to explore “somewhere famous.”
We took the girls to the Colosseum, an amazing sight to behold. As we stood amid the ancient ruins, I asked my kiddo, “What do you think? Does this feel famous?” She replied, “No, this isn’t what I mean. It does not feel famous.”
Later that day, she unexpectedly became quite animated. “Mom, this is it! This is famous!” We were at the Trevi Fountain, another amazing landmark. I asked her, “What makes this spot so famous?” She rolled her eyes and explained, “Mom, don’t you remember? It was in ‘The Lizzie McGuire Movie!’”
Ah yes. How on earth could I forget?
Somewhere famous
I’ve been thinking about that conversation lately. Not because of Rome, but because of my hemophilia.
Back then, we did, in fact, live in arguably the most famous city in the world. I was head of the American school in Jerusalem, educating the children of diplomats stationed abroad.
Jerusalem was a strange blend of old and new — ancient archaeological sites beside shopping malls, coffee shops, and high-rise apartments. One route home from work passed the Garden of Gethsemane. Another passed the Dome of the Rock. We were minutes from the Old City and the Western Wall, living amid the convergence of three faiths.
Some days, I paused and took it all in. More often, I didn’t. My mind was on dinner, report cards, and whether I had found a special education teacher for next year. My daughter was right. When something extraordinary becomes your everyday, it stops feeling famous.
The same is true of my hemophilia care.
Living with hemophilia
Living with hemophilia has changed a lot for me in the past 10 years. In 2026, my biggest daily struggle is overcoming tiredness and laziness to make sure I don’t skip a factor VIII (FVIII) infusion. Skipping doses is never a good idea. FVIII helps my blood clot, and when I don’t stick to my infusion schedule, I risk bleeding.
My problems used to be much bigger. In 2016, I was fighting for my first factor doses to have at home. In 2018, I bled for 30 days after a surgery. The next year brought a new treatment center that listened to me, and I was put on prophylaxis to prevent bleeds. In 2020, I learned my FVIII was clearing my body too quickly, so I switched to a product that lasted longer.
In 2021, I tested positive for an inhibitor, though barely. Inhibitors are a scary complication because a patient’s body attacks the infused FVIII that is supposed to help their blood clot. In 2025, I tried a new product that I also cleared too quickly, then trialed yet another, which I’m still on today.
Pausing and remembering
What a whirlwind. Yet day to day, I think about work, kid stressors, and food prep! I complain that I don’t get enough sleep or exercise. In the midst of it all, I forget to pause, to remember, to be thankful.
There was a time when diagnosis and treatment were all-consuming. As a woman, I was drastically, emphatically, and desperately pleading for care. Today I have that access. My infusions have become routine, just another task between work and dinner. They don’t feel miraculous. But they are. I am in less pain as an adult than I was as a child. That is something to stop and remember often. I am so grateful.
The next time I visit somewhere famous, I will pause to acknowledge its beauty and history. In that moment, I will also acknowledge that access to care allowed me to get there pain-free. That is truly as inspiring as any landmark.
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.
Leave a comment
Fill in the required fields to post. Your email address will not be published.