Watching my son grow and realizing he’s not defined by his rare disease
As Finley gets older, I adore watching his personality take shape
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One of my favorite things about raising kids is seeing them figure out what they like doing, what sparks their interest and joy. When they are really little, you catch glimpses of what they are into. But now that our kids are getting older, I enjoy seeing how their personalities are forming.
With our son Finley, who was born with Alagille syndrome, I love seeing how his life and who he is becoming continue not being defined by his rare disease.
Raising kids is both a blur of time and an eternity. On one hand, I can’t believe Finley is 5 years old and his brother, Jackson, is 8. I feel like I can teleport right back to when they were both born and feel all of those emotions and circumstances. I also feel that the challenging moments of children growing up are like bumps in a path that can seem endless. Those moments may feel like an eternity, but in the grand scheme of things, they’re just a blip in time.
Finley proudly shows off his rainbow drawing. (Photo by Jay Sandstrom)
Reflecting back, the early moments of Finley’s life were dominated by his Alagille syndrome diagnosis. He was seeing all of his specialist doctors several times a year. My wife, Dani, and I were worried about whether his treatments — mostly medications and nutrition — were working. We were hyperfocused on his food intake, tracking the ounces of formula he’d drink in a day to make sure he was hitting his calorie goals.
Then the transition to solid foods brought its own set of worries. Was he getting enough nutrition to grow? Why had his weight been flatlining for so long? It was extremely difficult to not get caught up in those details and let them dominate our thoughts.
Thankfully, as Finley has grown, the worries have dissipated somewhat. That’s not to say I don’t still worry, but I no longer am constantly thinking about his diagnosis every day as I did earlier in his life. There was a time, though, when I never believed I’d have a day like that, when Alagille syndrome wasn’t front and center in my mind.
Today, I love watching Finley’s personality round into form. I’ve written before that he can be mercurial, which is certainly still true. He can give me a run for my money and test my patience. But he is also a total sweetheart who will sit and draw quietly for an extended period of time.
Recently, his favorite thing to draw has been heart rainbows with kitty ears, which really paints the picture of his little personality these days. At day care, he draws a ton of rainbows throughout the day with his best friends, while they talk about their favorite songs from “KPop Demon Hunters” and “Zootopia 2.”
As Finley continues to grow, I’ve been working on avoiding getting stuck in the thinking that those difficult stretches will last forever. It certainly feels like that often is the case, but in reality, they are a flash in the pan. Reminding myself to zoom out and remember the positive aspects of how Finley’s personality is rounding into place is important. He is becoming his own little person, and that person isn’t defined solely by his rare disease.
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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