Now in kindergarten, my son is hinting at a fear of growing up

Over the past year, I was largely focused on the next big change in my family’s life: my youngest son, Finley, starting kindergarten. There would be no more daycare pickups or drop-offs, giving me back commute time. Finley and my oldest son, Jackson, would be on the same schedule. But what I didn’t consider until recently was the anxiety Finley might be facing because of his Alagille syndrome.

Finley was born in January 2021 and diagnosed with Alagille syndrome that April. For the next five years, Finley’s life was fairly consistent. He went to the same daycare center. He has seen mostly the same team for his Alagille treatment and primary care. Our family moved when he was 6 months old, but we have lived in the same house ever since. Kindergarten is one of the first major shake-ups Finley can remember, other than getting two new kittens last summer, which he was very on board with.

I thought I was the one worried about kindergarten starting. I’ve certainly written enough about it in my columns. Finley seemed excited about the next step, and the school year got off to a great start. He hopped right on the bus and had a great first two weeks at school.

But then, there was a bit of a snag, which gave me a peek at Finley’s thoughts.

Recommended Reading

Sept. 21, 2026 Columns by Jay Sandstrom

Food restrictions at school prompt both worry and compassion

Finley always provides a great smile. (Courtesy of Jay Sandstrom)

On a recent Friday morning, Finley and Jackson were chasing each other at the bus stop when Finley took a tumble, scraping his knee. This set him off, and he struggled to calm himself to the point that he refused to get on the bus.

It was a frustrating moment, but one I could chalk up to heightened emotions caused by the fall. He came home from school that day all smiles, and we discussed why that type of situation would need to be handled differently in the future. Finley seemed to understand.

Then, Monday morning arrived. He had followed his “getting ready” plan without any issues, but the second we walked out the door, his mood changed. When the bus arrived, he shut down and refused to get on. I had to carry him on the bus, and as I tried to get him buckled, he kept undoing it.

At that point, I decided I wouldn’t make the driver and the entire busload of kids late because Finley wasn’t cooperating. I was angrier than I’d like to admit. We had talked about the importance of riding the bus as planned, and there was no fall to explain why he didn’t want to get on. This was a pure moment of defiance. I dropped him off at school and told him we would have a serious chat when he got home.

Later that day, after giving him some quiet time to think, we had a talk. He told me he didn’t want to ride the bus because he wanted to stay home. He had been in full-time daycare, so this hadn’t been an option before. But his next comment made my ears perk up. He said, “I wish I could be a baby again.”

In that moment, I realized Finley is probably worried, too. On top of this big change, he has a rare genetic condition that he cannot fully understand yet. We talked about how exciting it is to grow up, but also about how important it is to enjoy being his current age.

I know that as he grows up, paying attention to his feelings and supporting him in navigating Alagille syndrome will be very important. That process is only just starting as he is reaching an age where he can articulate his thoughts. I vow to listen, pay attention, and work with him through whatever changes come next.

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.