Food restrictions at school prompt both worry and compassion

After months of buildup, my youngest son, Finley, who was born with Alagille syndrome, finished his first week of kindergarten. He loved starting school, and by all accounts, it went off without a hitch. But while Finley seems to be adjusting well to his new routine, I was thrown a bit of a curveball with a letter that came home.

One of Finley’s classmates has severe food allergies, and as a result, certain foods aren’t permitted to be sent as snacks to school. This is not our family’s first exposure to such a situation, as my older son, Jackson, who is now in third grade, has had similar experiences in previous classes. But when Jackson was younger, these restrictions led him to stop eating several foods. That is my biggest worry for Finley.

Food is an important part of Finley’s Alagille journey. Getting enough calories to help facilitate his growth is a main focus these days. While Finley is generally a good eater, he has been going through an opinionated period in which he’s been willing to eat fewer foods than he used to. I hope this is simply a phase, but it’s hard not to worry that the restrictions at school will cause more items to fall off Finley’s willing-to-eat list.

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Finley, right, was a bit adventurous with his eating on vacation this summer. (Photo by Jay Sandstrom)

I feel bad that I’m expressing worry and frustration about making sure I can pack foods that Finley will eat and that will also be safe for those with life-threatening allergies.

While Finley doesn’t have severe food allergies, he does live with a rare genetic condition, so I feel compassion for what that family must be going through. They have to front-load information about their child to the school and the teacher, just like I had to do when Finley started kindergarten. I am thankful that the information I needed to share about Finley is largely precautionary. I hope it stays that way for a long time. But with liver disease, you never know when something might change. Will I have to share more serious concerns with the school at some point?

I know that the food situation will work out. Finley will get the calories he needs one way or another, even though it has been more challenging recently. I’m also trying to use this experience as an opportunity for reflection. It’s easy to focus on your child when they live with a rare condition, but there are so many other kids and families navigating challenging situations. Even though it might be a minor inconvenience for me to pack differently for Finley, it’s the least I can do to help another child stay safe.

It’s important to keep everything in perspective. I’m just happy that Finley is enjoying kindergarten, and I will make sure his joy continues throughout the school year.

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.