Soaking in the season of joy is extra special this year
Our 4-year-old son with Alagille syndrome now understands holiday magic
Raising kids is tough. Speaking for myself, as someone who often recharges with alone time, having two young boys has been a struggle at times.
When our youngest son, Finley, was diagnosed with Alagille syndrome, it added another layer of worry and challenge to our family life. I’m working on reminding myself that, while the hard moments can sometimes dominate my emotions and feel overwhelming, they are actually just a small fraction of our lives together. I’m focusing on the positives and finding joy in those moments, and the holiday season is a perfect time to do that.
I’ve previously described Finley’s Alagille syndrome as a storm cloud looming in the distance. Thankfully, it doesn’t significantly impact our day-to-day life right now. He takes medication in the morning and at night, and we monitor his condition with regular doctor appointments. For the most part, he is stable and living like any typical 4-year-old. However, it’s hard not to feel a lingering worry about how his health might change in the future.
Magical moments
Finley Sandstrom, 4, smiles with elation upon meeting Santa Claus during a recent holiday train ride in the mountains. (Photo by Jay Sandstrom)
I cherish the moments when Finley’s Alagille syndrome has no impact on our family life. The holiday season is one of those times, filled with fun and joy. At his age, this is the first time Finley truly understands the magic of the season.
Recently, my wife, Dani, scheduled a trip on a Santa train up in the mountains. It was an afternoon ride on an old steam engine, complete with visits from Santa, his helpers, hot chocolate, and cookies. The boys loved it, but the highlight for me was seeing Finley experience pure joy. I managed to capture his reaction in a photo the moment Santa entered our train car, and I treasure that image.
Finley understands that he has liver disease, but he is still too young to grasp what that really means, and for that, I am thankful. I know that one day those difficult conversations will come, and I’m aware that challenges lie ahead. Yet I also know there will be many more moments of joy. Even though he can be quite opinionated with a bit of what I’ll call selective hearing, his smile and laughter far exceed his size.
So, for the remainder of this holiday season, I will put all my effort into creating more of those joyous, magical moments. Finley is loving every holiday opportunity, and I want to be right there with him through it all.
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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