A Father’s Day in the life of a busy caregiver

When I sat down to write this column, I hit a bit of an initial roadblock. I’ve been writing columns here for over a year now. My son Finley, who has Alagille syndrome and is the whole reason I write, is only 4 years old, and I sometimes feel I don’t have the well of content to draw upon that I wish I did. There are only so many experiences, doctor appointments, and other components of raising a child with a rare disease that I’ve experienced to this point.

Then the idea bulb turned on. Why not share a little bit about me, the caregiver?

So many of my columns are focused on my worries, anxieties, and challenging experiences raising my boys. And this column focuses mainly on Finley, my youngest son, who was diagnosed with Alagille syndrome at 4 months of age.

I share those experiences with the goal of helping other families out there who are navigating the challenging chapters of the rare disease journey. I aim to create an opportunity for someone else to read my content and feel better about what they’re going through. Maybe they’ll feel less isolated. Hopefully they’ll see that we all experience difficulties as parents and caregivers.

But today I want to focus on fun. Because while there are challenges with any sort of parenting, particularly with rare disease parenting, there’s also a ton of good. So why not rewind a few days and share about my recent Father’s Day experience?

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A father’s day

Finley sits in the cockpit of a fighter jet. (Photo by Jay Sandstrom)

That Sunday started off differently than most mornings. For whatever reason, when the boys wake up early on the weekends, they always wake me up first. It’s been that way for as long as my oldest son, Jackson, could get out of bed on his own.

But this Father’s Day? I got to sleep in. It was glorious, though a bit discombobulating. I got to take my time getting ready and came downstairs to a wonderful breakfast prepared by my wife, Dani. Then it was time to hit the road.

When it comes to days like this, we like to explore the areas around us, going to towns and neighborhoods we don’t frequent often. For this adventure day, we embarked to the Museum of Flight. It’s an amazing museum in our area of Washington state that has a ton of aircraft of all types.

I’d never visited as an adult, and it was an awesome experience. Though I did spend the majority of the time chasing the boys, we got to check out the inside of a Concord jet, walk through a replica space shuttle, and see the fighter planes from World Wars I and II. It was an awesome experience to spend with my family.

My Father’s Day meal. Mmm. (Photo by Jay Sandstrom)

Next up, food time. My wife and I love to visit different local breweries. We collect the stickers from each spot we visit and plaster them all over the fridge in our garage as a roadmap of our journeys. I had a spot by the Museum of Flight earmarked for the fun names of its beer, but also for the delicious-looking smashburger truck they permanently host.

I’m a bit of a burger connoisseur and have been enjoying learning the craft of making them at home, but I also love trying new spots. So I got to enjoy the sun, eat a delicious burger, and enjoy a beer with my family. What could be better?

But it did get better. Turns out that on Sundays at this location, they have someone set up retro video game consoles in their upstairs loft for patrons to play. Naturally, we wrapped up our lunch and headed upstairs. It was so much fun to introduce the boys to Super Nintendo and other consoles and show them just how fun, yet unforgiving, some of those old games could be.

Finley tries out an older video game. (Photo by Jay Sandstrom)

That took up the rest of our time for the day, which wasn’t the original plan, but the games were too fun to stop and move on to a new spot. I wouldn’t have changed a thing. It was a near perfect day.

This column was light on the Alagille content. But I think it’s an important thing to share.

Alagille is part of my life. My son’s diagnosis shifted our parenting in some specific ways, but it does not define our life. It’s simply part of it.

On an average day, outside of medication he takes, Finley is not defined by his Alagille syndrome. I aim to make sure to celebrate the fun days, the normal days. And I’m reminding all other caregivers out there that while it can sometimes feel as if Alagille is encompassing every detail of your life, it’s merely a component of a larger picture. And that larger picture is your life.

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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