The world spins forward as our son with Alagille advances to pre-K
As good experiences diminished early worries, we're hoping for more this year
When I brainstorm ideas for columns, I often end up focusing on similar themes, such as anxiety, stress, complications, difficulties. All those are definitely part of raising a child with a rare disease, as I am.
My son Finley was born with Alagille syndrome, and although his health has been good overall, those difficult feelings permeate so much of what I tend to write about. I cover them to show the challenges we face raising him, stories that may feel relatable to another family like ours.
While I often spend a few weeks writing about difficult topics, there’s so much more to Finley’s life that should be celebrated.
Finley is all smiles and ready for pre-kindergarten. (Photo by Jay Sandstrom)
So today, my wife, Dani, and I focus on his next big adventure: pre-kindergarten, or pre-K.
Finishing day care
Finley is entering his final year at his day care center. He’s been there since it opened in 2021 and will have put in time in just about every room in the building. He started around his first birthday, so he’s become a mainstay there and loves it.
The teachers and staff have done a wonderful job supporting his growth and development, especially earlier in his life, when specialized formula, a high-fat diet, and other features of Alagille syndrome were more involved.
He’s ecstatic, though, to start pre-K. He’ll get to be the big kid for a year. But even though that’s exciting, it’s not as exciting as the faraway thought of starting kindergarten a year from now.
Finley’s older brother, Jackson, is entering second grade this year. For two years, Finley has looked on in jealousy as Jackson gets to ride the big yellow school bus each and every day. While he says he cannot wait to ride the bus, I’m curious to see how he reacts on that first day when he needs to step inside it. But that’s a year away; we can table those thoughts for now.
Finley is quite the smart little guy. He loves to do art projects, sing songs, and build with Lego bricks. He has a wonderful imagination and an active personality. I’m so excited to see how he does in pre-K, and I know he’ll be set up well for kindergarten.
Finley enjoying a “bath” of rubber ducks. (Photo by Jay Sandstrom)
It’s easy to forget that, early in his life when we were going through the diagnosis phase and hearing terms like “failure to thrive” to describe his condition, I was asking worried questions about his future. Everything felt so uncertain. Those feelings have leveled out over time, and even though they resurface occasionally, focusing on the day-to-day has been the norm.
Finley is doing great and is beyond excited for pre-K. I’m excited to see how he continues to grow as an individual. I’ve no doubt that he’ll change a lot over the next year as he gets ready for the big jump to kindergarten. I also know that he’s already been through a lot, and he’s not going to let anything slow him down.
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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