A boys’ day out brings a welcome sense of normalcy

When I brainstorm column topics, I often find that I lean into the stress and anxiety that come from raising a child with a rare genetic condition. My son, Finley, was born with Alagille syndrome. His birth was my direct introduction to the world of rare diseases. While there are concerns about his health and condition, there are also numerous normal moments to celebrate.

From left, brothers Finley and Jackson enjoy a recent hike on a nature trail in the Pacific Northwest. (Photo by Jay Sandstrom)

These are the stories that I truly wanted to share when I started doing advocacy work. These everyday moments can show parents who are receiving a scary diagnosis that, while it feels like the worst news in the world to hear your child has a rare genetic condition, there are unforgettable moments to celebrate as well.

In my last few columns, I’ve written about anxiety. Today, I want to focus on a boys’ day out I had earlier this week with Finley and his older brother, Jackson.

Unfortunately, my wife usually has to work on Veterans Day, so for the past few years, it has become a day out for my kids and me. We live in the Pacific Northwest, and Veterans Day is in November, so we often end up seeing a movie or visiting a kids’ museum if the weather is bad. But this year? It was sunny, 60 degrees, and beautiful. It was time for a little nature exploration.

Curiosity and adventure

There is a fantastic park near where I grew up with very short, beginner-friendly hiking trails that are still immersed in nature. Both boys were so excited to grab some walking sticks and take a nature walk. Finley was amazed by the size of the maple leaves that had fallen to the ground. We looked for different types of mushrooms growing on fallen tree trunks. We talked about how the forest there was once used for logging and how the old stumps left behind have sprouted new trees from their tops. Jackson and Finely were both so invested, curious, and adventurous. It was a bit of a task to keep them on the trail as they wanted to dive headfirst into nature. I was overjoyed by the experience.

The boys love going to the game store. (Photo by Jay Sandstrom)

Following our nature walk, we visited with the farm animals that live at the park. Then we headed to a breakfast spot where I used to go when I was growing up. It was like walking into a time capsule. I don’t think it has changed a bit since the 1990s.

The boys loved their pancakes and French toast. Their behavior was about as good as I could ask for, so the next stop was the game store to look at the 5-cent Pokémon cards. We then wrapped up our boys’ day out and headed home. It was a major success.

Usually, I want these columns to focus on the medical side of raising Finley. The ups and downs of his care. The feelings of being a parent raising a child with Alagille syndrome. But I never want to lose sight of telling these kinds of stories. Stories of normalcy. Of excitement and joy. Of fun and exploration. Because when I first heard my son had Alagille syndrome, that is what I wanted to see. And finding that sort of thing felt impossible.

I hope that through columns like this, someone who needs it finds this message. There will be days that will feel impossible. But there will also be beautiful memories made along the way. Celebrate those moments. And when possible, block out those anxieties looming in the distance.

Note: Liver Disease News 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 other 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 Liver Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to liver disease.

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