My son’s fourth birthday is yet another milestone to celebrate

Last year, I wrote about celebrating my son Finley’s third birthday. I shared about that day to show that, although Finley has Alagille syndrome, it’s only part of our story as a family.

Finley Sandstrom chose a Shadow-themed celebration for his fourth birthday this month. (Photo by Jay Sandstrom)

As we continue our journey of raising a child with a rare, genetic condition and advocating for those with Alagille syndrome, my goal is certainly to share about the medical components of his life, but also the ordinary details and milestones. That’s the information I wanted to know when we received Finley’s diagnosis.

Hearing that our newborn child had a condition that would affect his long-term health was incredibly scary. It’s hard not to get bogged down in the barrage of questions that flooded our minds, as well as the potential complications and ongoing ramifications. I’m sure that’s true for most of us.

What I hope to share here is that while days of struggle come with rare diseases, so do many days of celebration. That’s why I want to share about Finley’s fourth birthday.

It’s crazy to think back on it, but I distinctly remember a thought I had when we were in the hospital during the early days of Finley’s life, before his diagnosis. When I heard staff use the term “failure to thrive,” my immediate thought was, “How long is he going to be with us?”

Thankfully, Finley is thriving and doing very well. He’s in preschool, starting a basketball class soon, and is about as active as they come.

Despite these good tidings, I can’t forget how fortunate we are to have hit each and every milestone. The most recent one was his fourth birthday. Last year he understood that his birthday is his special day. This year he wanted to plan everything we’d do to celebrate, making his opinions known loud and clear!

Finley Sandstrom plays paleontologist at a local natural history museum on his fourth birthday. (Photo by Jay Sandstrom)

He requested a Shadow cake, based on a character from the recent “Sonic the Hedgehog 3” movie. He wanted a big cake with decorations from a local baker. We also made plans to go to our local natural history museum, which had a “Dino Dig” kids event with all sorts of hands-on activities about dinosaurs. He requested his favorite food, General Tso’s chicken and white rice. We had an amazing weekend.

While out on our adventures, he told anyone who’d listen that it was his birthday. He showed off his brand-new Shadow T-shirt, which matched his cake. Finley hasn’t always been the easiest kid to parent lately (what 4-year-old is?), but this weekend he was a little birthday angel. We made some great memories, and despite being only a few short minutes from the children’s hospital where we go for his care, Alagille syndrome wasn’t on our minds.

I’m thankful for each one of these birthdays I get to have with my two boys. I’m trying not to take them for granted. I can recall every moment from the early days of Finley’s life like it was yesterday, and the fact that it was four years ago feels surreal. They say that raising kids feels like a blur, so I’m trying my best to slow that feeling and make the most of my time with them.

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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