Celebrating my son’s growth with Alagille syndrome
Seeing Finley navigate obstacles reminds me how far he's come
My son Finley was recently invited to a birthday party for one of his best friends. He was so excited that he talked about it for weeks leading up to the big day. It was at a local bouncy house party location that we’ve visited before, so I knew what to expect. Still, I worried about how much Finley, who was born with Alagille syndrome, would be able to do on his own.
Finley is 4 years old and very capable. But because of his Alagille diagnosis, he has trouble processing fats and gaining weight, meaning his growth has always been slow. While he can do everything his peers can do, he sometimes needs assistance because of his smaller size. I always worry that he’ll need help navigating play obstacles at this type of event.
Finley’s older brother, Jackson, has attended a few parties at this location, and Finley tagged along to one last year. The kids absolutely love this place. There are two rooms full of bouncy houses, inflatable slides, and obstacle courses. Finley has no fear and will try just about anything. But I wondered: Would he be able to reach everything? Was he big enough to climb over the obstacles? Could he reach the next rung on the ladder?
Growth — in more ways than one
Finley waits patiently for his pizza after all of the fun birthday play. (Photo by Jay Sandstrom)
The last time we were there, Finley required a lot of help. My wife and I had to help him reach and climb obstacles. While it’s a lot of fun, there’s a reason those play obstacles are for kids, and not adults. It’s a lot of work!
So when we arrived at the recent party, my wife and I were fully prepared to take turns with Finley. But to our joy, he flew through the first obstacle course. It was a bit challenging for him, but he was determined.
It was such an exciting moment to witness. I didn’t have to worry about helping him and could simply sit back and play the role of a supportive parent, trusting in his abilities.
I needed that. It was a reminder that while Finley’s size may be an obstacle at times, it’s one he can work through. He is growing, albeit at his own pace and following his own curve.
Finley has fun navigating the obstacle course. (Photo by Jay Sandstrom)
It was also nice that he was able to do everything on his own, because, as I’ve shared before, we invariably get the question, “How old is he?” followed by, “Oh, he’s a little guy for his age.” I’m pretty practiced at these interactions now, but I don’t love making small talk about my son’s rare genetic disorder. I know people mean well; I just wish more would move on with the conversation after hearing his age. I suppose that’s wishful thinking. While these interactions provide opportunities for education, they can be challenging and, at times, awkward.
At least at this party, I got to focus on the fact that Finley was able to navigate more of the obstacles than ever before. That’s something to celebrate. He was overjoyed and had an absolute blast. Then, in the party room, he ate more pizza than any other kid his age. All in all, it was a great party.
Sometimes I need reminders of how far Finley has come. From being classified as “failure to thrive” as a newborn to sliding down the biggest inflatable slide at the party, his growth is not something I take for granted.
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