As my son prepares for kindergarten, I’m planning how to ease his worries
A simple question led me to think about his Alagille syndrome
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Until this point in time, when it has come to raising my 5-year-old son, Finley, one of the things I’ve been focused on is managing my worries. I think it’s probably impossible to raise a child with a rare genetic condition like Alagille syndrome and not have them. But as he gets older, I’m starting to see that I’ll also need to start working on helping him with his own fears.
This realization came into focus the other day when our family was talking about Finley starting kindergarten in the fall. His older brother, Jackson, who is in second grade, has been telling him about what to expect. In general, Finley has been excited for this new chapter of his life. But the first day of school is inching closer, and the reality that he won’t be going to his familiar daycare center anymore is starting to set in. He’s gone to the same center his entire life, so that change will be a big one.
Finley’s worries initially took the form of a small question: “What if I don’t make any friends?” It’s a question that any parent thinks about when their kids go off to school. We all want them to have a good experience, make friends, and enjoy their time. For Finley, I have extra concerns due to the Alagille syndrome variable lurking in the background.
Columnist Jay Sandstrom’s son Finley starts kindergarten in the fall. (Photo by Jay Sandstrom)
Luckily, Finley will be heading to a school with familiar faces and friends from the neighborhood. He has an outgoing personality and should have no issues making friends. But that worry is creeping into his head, because change is coming, and change can be scary.
While I’m not overly concerned about him making friends at school, his innocent question led me to think about other worries we might need to navigate with him in the future. Unfortunately, Finley will face many more concerns than most kids because of his diagnosis.
It’s not a fun topic to think about, but it is important. His quality of life depends on many variables, and his mental health is just as important as his physical health. I’ve had enough struggles with managing my anxieties, so I need to set the stage to support Finley as much as humanly possible as these questions continue to evolve over time.
In the fall, I expect Finley to be nervous on the first day of school when he gets on the bus. I also expect him to be all smiles when he gets off the bus in the afternoon. I anticipate hearing about his new friends, the games they’ll play on the playground, and the activities he’ll get to do with his new teacher. His worries about a new setting hopefully will melt away, and we’ll find ways to ease some of the others that will arise as we continue to navigate his Alagille syndrome journey.
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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