Learning how to let go of worry isn’t easy as an Alagille parent
It can be hard to calm those feelings when raising a child with a rare condition
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I’ve been writing this column for Liver Disease News for just over two years now. When I brainstorm ideas for what to write, I love it when I stumble into an opportunity to provide an update on a theme, story, or situation. Sometimes those are scary medical moments that I feel are worth sharing, but other times they’re joyous anecdotes about our son Finley growing up. These instances show that while he was born with Alagille syndrome, the condition doesn’t define him.
One thing I’m working on as a parent is letting go of my worries a bit more. That’s easier said than done, of course. With everything going on in the world today, in addition to raising a child with a rare genetic condition, it’s hard to calm those feelings. When opportunities arise that allow me to release some of those worries, I try to make sure that I don’t take them for granted.
One such situation happened recently. Finley was attending a friend’s birthday party at a local bouncy house that we’d visited before. In the past, Finley faced some challenges due to his smaller size, and the first time we were there, he couldn’t overcome some of the obstacles. Then, a year ago, we went a second time, and he could do most of the things on his own. As a parent, it was such a relief.
Finley emerges from an obstacle course at a recent birthday party. As he gets older, his skills in navigating the course continue to improve. (Photo by Jay Sandstrom)
This time, when we arrived at the party, we didn’t worry as much, although when Finley is with his peers, his smaller size is noticeable. That’s where Alagille syndrome shows up in our daily life the most, apart from the dreaded itch that is a recurring symptom. To my joy, Finley was off to the races. He was untethered and having the time of his life. He spent most of his time on an obstacle he was too small for last year, where he had to jump from one big bump to another to cross a course. It was a small win in the grand scheme of things, but a big win for me as a parent.
Watching Finley cross that obstacle course over and over was a reminder for me to take a moment and zoom out. It’s so easy to get bogged down in those day-to-day moments that are difficult and worrisome. But Finley is growing. He is developing in front of our eyes.
I sometimes find it difficult to avoid getting stuck in what is in front of me. But when I take a moment to view the larger picture, it’s remarkable how far Finley has come in his five years of life. He’s living his life and having fun being a kid. I need to remember to sit back and watch his growth on display. Yes, he has Alagille syndrome, but he is also doing great. Those nonstop leaps across the obstacle course prove it.
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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