Training for a marathon takes real commitment and determination. Athletes spend weeks or even months getting ready, following a schedule of running and rest days. Crossing the finish line and achieving their goal is incredibly rewarding, as the challenge was their choice. Raising two sons with severe hemophilia A…
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Last in a series. Read part one. Last week, I asked my oldest son, Julian, what he wished people outside the bleeding disorders community understood about hemophilia. He wished they would not treat him as though he lived in a protective bubble. He wanted independence and trust…
I’ve been thinking lately about how resilience is discussed in the Philippines. After major storms, familiar images circulate online: weddings continuing despite floodwater inside churches, people joking or swimming through flooded streets, and families smiling while cleaning mud from their homes. There is something admirable about finding humor when…
Hurricane Ian directly hit my condo in 2022. My mother and I evacuated to Orlando, Florida, and couldn’t return for weeks. It was long enough that “recovery” became its own kind of routine — a slow, stubborn process that I eventually made my way through. I know how to do…
First in a series. This morning, my oldest son, Julian, 30, called me from Philadelphia, where he is living for two months before packing up his bags and moving again. He is a professional entertainer hoping to sing on Broadway one day. Currently, he’s on his first national tour for…
This season, we’ve seen terrible natural disasters. Tropical storms, wildfires, mudslides, earthquakes, and flash floods have destroyed communities worldwide. Watching news reports from these places is heartbreaking. We may not know how to respond to seeing people covered in mud searching for loved ones or coming home to find only…
Lately, I have been trying to spend as little as I reasonably can. I decided to enter a season of aggressively paying down debt. Even writing that makes me slightly uneasy. I have a personal concern about announcing goals: Sometimes saying what I plan to do gives me enough…
If I could go back in time, I would learn to control my anger sooner. I didn’t say unkind things or become physical, but my voice did get loud enough to frighten my children. After I regained my senses, I would punish myself for the panic I saw in…
I went on a date with my husband, Joe, when I was a 19-year-old college freshman. Thirty-eight years later, we’re still together. Like most couples, we had our share of challenges early on, but we made it through. Building a life together at a young age isn’t easy, but…
Recently, my husband, Jared, and I asked our 7-year-old daughter what she knew about being a hemophilia carrier. It wasn’t a serious family meeting. There was no carefully prepared speech. She was stimming and half-playing while we talked, and at times I wasn’t entirely sure how much of the…
