Being brave will serve my son with Alagille syndrome well
Finley's bravery inspires me to be brave, too
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Parenting has taught me a lot. I knew I would be teaching my kids, but I also knew I’d be learning from them along the way. One trait I am working to absorb from my youngest son, Finley, who was born with Alagille syndrome, is bravery.
At 5 years old, Finley isn’t completely fearless, but he’s pretty darn close. He will climb obstacles at the playground even if they’re much bigger than he is. He will jump off the ledge without a thought. He will bomb down the driveway on his scooter in a way that his older brother, Jackson, never did at that age. Sometimes this is a great trait, and sometimes it is a huge pain as a parent. But what I do know deep down is that his bravery will serve him well as he grows up.
After Finley was born in January 2021, when we were in the neonatal intensive care unit and had no idea what was causing his health issues, I was certainly good at pretending to be brave. But convincing myself that everything would be OK was difficult as I watched my tiny child struggle to gain weight.
During that period, I spent a lot of time inside doctors’ offices and hospitals — the last places anyone wanted to be during the pandemic. I had to fake positivity and bravery, not just for Finley, but for Jackson and my wife, Dani. Putting on this facade was easier said than done.
Finley is always brave during his doctor appointments. (Photo by Jay Sandstrom)
Over time, as the diagnosis came into focus and we understood that Alagille syndrome was at the root of his challenges, it was a bit easier for me to be brave. The medication and nutrition plans were working, and Finley started to grow. At nearly a year, he was a chunky baby for the first time in his life — a sight I never thought I’d see. But it was the positive thinking that kept me going.
Learning from my 5-year-old
Now that Finley is older, I am starting to take my cues from him. Recently, we took a short family trip to a small town where you can ride a sled roller coaster down the side of a mountain. Finley went on the ride without a single worry or fear. At that age, I probably wouldn’t have even gotten on the ride. But he wasn’t deterred.
My hope is that his bravery will aid him on his medical journey. I will always be there for him, but at a certain point, he will need to take charge of his health.
For now, I will keep taking Finley’s lead and hopefully set a good example for him along the way. If we can be brave together, it will only benefit us.
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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