I’m learning how to let go of worry and embrace the moment

Now that my son Finley is 5, I’ve been reflecting a lot. That’s why so many of my recent columns have focused on the milestones he is reaching this year. While these are exciting to celebrate, I haven’t forgotten how scary his Alagille syndrome diagnosis was. During that early period of his life, I never imagined things would turn out the way they have.

Finley is an incredibly smart young boy. He is social, outgoing, and creative, and can’t wait to start kindergarten in the fall. Currently, he is loving swim lessons, is excited to start soccer classes soon, and enjoys building with Legos like his older brother. I wish I could give my past self a crystal ball and a glimpse of the future, because I was so worried when Finley was an infant.

The worry was justified. Raising a child with a rare genetic condition like Alagille syndrome involves a lot of complications. The disease affects everyone differently, which can be baffling. I usually explain Alagille by saying, “One patient could be walking around with no idea that they have it, while another might live for only a few weeks.” When I first learned about this, it was hard not to mentally go to the worst places imaginable.

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Columnist Jay Sandstrom’s son Finley is following his own curve, in his growth and in life. (Photo by Jay Sandstrom)

Each step of Finley’s development brought some degree of worry. Was he laughing when he was supposed to? Was he crawling soon enough? Was he eating the nutrients he needed? I’ve spent so much time fretting about these questions. It was nearly impossible to remind myself that he was developing on his own timeline, just like any other kid. Until he was about 4 years old, I couldn’t shake the worry.

I let my concerns overshadow what was happening in front of me. Finley is following his own curve — in his growth and in life. He’s not just growing but thriving. I am working hard to let go of my anxiety — to embrace reality and celebrate the here and now. I truly believe he will continue to thrive. Alagille won’t define him.

If I could give some advice to my past self, or any other parents raising young children with Alagille syndrome, it would be to take it one day at a time. Celebrate each moment and milestone. Trust that, while there will be challenges, there will also be moments of normalcy and achievement.

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