Despite my worries, my son is excelling in his private swim lessons
His liver disease diagnosis initially had me concerned about water exposure
My son Finley is a ball of energy. At times, he’s hard to contain. He’s opinionated and, like all 4-year-olds, has extremely selective hearing. And when he doesn’t want to do something, believe me, you’ll hear about it. So when we signed him up for swim lessons recently, we worried he wouldn’t take to it, but swimming is now one of his favorite activities. I’m so thankful that his Alagille syndrome doesn’t hamper this ability.
Finley was diagnosed with Alagille syndrome when he was about 4 months old. Since then, his treatments have mainly focused on nutrition and growth. Finley still hasn’t made it onto the U.S. Centers for Disease Control and Prevention’s growth chart for his age range, but he’s been following his own curve. When he was young, one of my biggest worries was that he’d have trouble doing “normal” kids’ activities. Thankfully, that worry has not come to fruition.
Finley shows no fear riding his scooter down the hill. He’s pretty squirrelly in basketball class, but he’s having fun learning. Swim lessons, though, are where he really shines.
Finley lounges in the pool on his back deck. (Photo by Jay Sandstrom)
It’d been years since Finley and I did a parent-child swim class. He loved that class at first, but over time, getting him into the pool became a struggle. He let me and the whole pool deck know that he didn’t want to get into the water. So we took an extended break, but my wife and I decided recently that enough time had passed, so we signed Finley up for lessons with an instructor. I had no idea what to expect when we arrived on the first day.
Turns out, he was the only kid signed up, so his session has turned into private swim lessons. Finley has excelled in the class. His instructor has been patient, kind, and helpful as Finley learns new skills. It must be tough to do an entire session with one kid when you were planning on multiple, but the instructor does a great job of keeping Finley busy and engaged.
Finley loves cooling off on the splash pad. (Photo by Jay Sandstrom)
Each time Finley enters the water, I’m reminded of the early days of learning about Alagille syndrome and liver disease. I knew nothing about either topic. I’d never thought about liver disease, and I’d certainly never heard of Alagille syndrome!
When doing my homework, I remember reading about how water exposure can be less than ideal for those with liver disease. I could only think about my other son, Jackson, and how much he enjoyed playing in the bathtub and in the pool on our deck. It was hard to consider that Finley might not be able to do these things. It’s a small detail in the grand scheme of life, but one that hit me in a major way.
Thankfully, Finley doesn’t seem to be negatively affected by water exposure. We make sure to apply plenty of lotion to keep his skin moisturized and healthy after baths and pool days. At this point, I don’t think anything will keep him from the water. He loves it, and it’s such a joy to see.
While I still worry about so much regarding his Alagille syndrome, Finley’s ability to try and enjoy new activities becomes less of a concern each day.
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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