Setting my worries aside as my son tries different activities
Alagille may impose obstacles, but it doesn't limit Finley's abilities
My son Finley is a little ball of energy. He is super active and doesn’t like to rest or sleep. At 4 years old, he’s at an age where regular activities and classes are on his schedule. It’s been super fun to watch him try new things, but I’d be lying to say his Alagille syndrome isn’t on my mind.
Alagille syndrome doesn’t define Finley, but it is a major part of his life — something I’m hyperaware of as his parent and caregiver. Despite my efforts to let those thoughts go at times, it is not an easy thing to do.
For example, Finley is a couple weeks into a basketball class. He is loving it, and it is so humorous to watch all of these little kids try and play basketball. It is a true comedy of errors. And while I know that the point of classes like this one isn’t to produce a high skill level, I can’t help but think about the possible limitations Finley’s size may impose.
Finley has trouble processing fats due to his liver disease, which inhibits his weight gain and growth. For that reason, nutrition has been a major focus throughout his life. He’s still just off the U.S. Centers for Disease Control and Prevention’s growth chart for his age range, but he’s following his own growth curve. And while he’s smaller than his peers, his abilities aren’t limited.
Finley loves to get creative with his builds. (Photo by Jay Sandstrom)
Finley is aware that he has liver disease, but he doesn’t limit himself because he doesn’t know anything other than wanting to play. So he’s learning to dribble, shoot, and pass — or at least some approximation of those skills. (What he’s doing only loosely resembles basketball, but it’s very entertaining to watch a group of little ones try their hearts out chasing the ball as it rolls away yet again.)
So the only one worried about his abilities is me.
There are moments when raising a 4-year-old is maddening, such as our current battle with bedtime. But there are also moments that make all those difficult experiences fade away. Recently, those include him displaying his independence and spirit in activity classes. He loves basketball and just started taking “big kid” swim lessons where the parent isn’t in the pool with him anymore. He is so excited to be doing these things, and if you let him, he will tell you all about the other stuff he wants to try.
I am trying to remind myself that while his Alagille syndrome diagnosis will place obstacles in his way, they do not prevent him from trying new things and participating in activities he enjoys. I will do my best to set aside any medical anxiety I may have and set Finley up for maximum success in whatever he wants to do.
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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