After months of anticipation, the first day of kindergarten finally arrived
As a dad, I was both nervous and excited for Finley
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After months of me writing about it, the day finally arrived: Finley, my youngest son who was born with Alagille syndrome, started kindergarten. It was his first time attending a school besides his familiar daycare center. He was excited, and I was both excited and nervous as he got packed up and ready to go.
Finley, right, and his brother, Jackson, are all ready for Finley’s first day of school. (Photo by Jay Sandstrom)
Two weeks ago, my wife, Dani, and I met with Finley’s teacher to review what to expect in kindergarten. This also served as an opportunity to share more about Finley. Even after five years, explaining Alagille syndrome to someone new never feels easy.
We developed an “elevator pitch” early on in his life, but I wanted to make sure his teacher understood all the important points without freaking her out. While Alagille syndrome shouldn’t affect Finley’s day-to-day life at school, I needed to let her know that it’s not unusual for him to look jaundiced sometimes. I explained that the itchiness of cholestatic pruritus can make him irritable at times, which may require redirection. He may also need to take his shoes off to scratch. Nothing crazy, just the behaviors and signs I’d want to be aware of if I were his teacher.
Thankfully, Finley was placed with a very experienced and compassionate teacher who was receptive to all this information. She put Dani and me at ease regarding how Finley would be received at school. While I still worried about him starting a new school, I knew he was set up for success.
Another thing weighing on my mind was food. As any parent of a child with Alagille knows, nutrition is a vital part of their care plan. While Finley can be a good eater, I wasn’t sure how he’d do with the new distractions of the lunchroom and using a lunchbox for the first time. Would he get enough to eat? Would I be able to pack enough of his favorite foods in a lunchbox? I may have overstuffed it on the first day, and he may have left behind his little thermos that was full of rice mixed with sauce and butter for added calories, but he ate nearly everything.
From left, Jackson, Finley, and Jay Sandstrom walk to the bus stop. (Courtesy of Jay Sandstrom)
The last thing weighing on me was his size. Many of my columns have touched on this, as his liver disease inhibits growth. Finley was so excited about his super-cool new Pokémon backpack, but it also happens to be about the same size as he is. And on the first day of school, it had a few more things in it than it normally will. It was quite the visual to watch him walk to the bus stop for the first time, enveloped by his backpack. He made it onto the bus, but it was a big step up.
While his size may worry me, Finley sure doesn’t let it get to him. He hopped right up there, got to the top of the bus stairs, waved goodbye, and was off to school with a smile on his face.
The first day was a major success, and I’m sure we have many more successful days ahead. There will be ups and downs, but I am glad to have finally reached this big milestone I had built up in my head. When I look at how Finley handled his first day, he wasn’t feeling any of the worry or anxiety that I felt. I suppose that’s a good thing. Maybe I need to take a page from his book.
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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