My son reaches the pedals on his big boy bike, and shows me I can, too

I worry a lot about my son Finley, who was born with Alagille syndrome. At the start of his life, I worried about whether he would even make it out of the neonatal intensive care unit. As time went on, I worried about whether he’d live a normal life and hit all his milestones.

But Finley has been hitting those milestones and showing that living with a rare disease isn’t going to slow him down. Meanwhile, my worries have only morphed, so I’ve learned to celebrate the victories when they come.

The biggest worry I have for Finley is that people will treat him differently because of his size. He is smaller than his peers due to his liver disease, and he probably always will be. Being just over 30 pounds at 5 years old does make him stand out. Developmentally, Finley can do everything his peers can do, but it can be easy for people who don’t know him to judge him on his size. Even worse than being judged is when he can’t do things he should be able to at his age because he’s too small.

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But just this past weekend, I had the pleasure of witnessing one of those exciting milestones I had been waiting years for, and it was such a joy.

One of the challenges Finley has faced has been navigating anything with pedals. He hasn’t been tall enough to ride tricycles or bicycles that normally would be appropriate for a kid his age. A Strider bike that should’ve been perfect was too tall for him. A trike had pedals that were too far away, even with added pedal extenders.

These obstacles were difficult for met to accept, even if they didn’t seem to bother Finley. He found plenty of other things to do to keep him busy, but I felt the sting of him not being able to do everything I thought he should be able to do.

So when my wife, Dani, and I bought him a big boy bike recently, and he was able to ride it without any sort of extenders or support, it made my heart explode.

It was such a release for me to finally see Finley do something that has always been out of reach, something so many people take for granted. That hurdle was finally cleared with this new bike. I saw the joy on his face, and I sure felt it, too.

As the parent of a child with Alagille syndrome, I worry about my son’s health and well-being, but I also worry about how he is going to be treated and perceived in the world, and this worry has been much more front and center as Finley prepares for kindergarten. He is leaving the friendly confines of a daycare center he has attended since he was an infant, a place that knows about his condition, and where I don’t have to explain why he is smaller than his peers every time he arrives.

This fall, he will be starting that all over again, and so will I. It’s uncharted territory for me, even though I know the introduction period at his new school won’t last forever.

As he moves on to that next step in his life, I am holding on to this moment with Finley’s big boy bike to remind myself that while situations may seem like they will never pass — like pedals that he may never reach — eventually, they will pass. Finley will adjust to his new school. He will get settled in, and so will the teachers and staff. And so will I.

It’s easier said than done, but I need to focus on the long term. I know I can do it. I just need to go watch Finley ride his bike for a reminder.

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.