Ups and downs of back-to-school shopping for my son with Alagille

Even though my son Finley is still in day care, we enjoy the back-to-school shopping phase. He may not be starting a new grade, but he is starting in a new room at the day care center. Why not show up with some fresh threads to kick off the program’s new year?

Finley loves to shop. He enjoys picking out his shoes, which was quite the challenge earlier. He’s particular about picking out his shirts and has no shortage of confidence to tell us what he wants. It can be enjoyable to see him get excited about his new clothes.

But some factors of this endeavor make me and my wife frustrated.

Finley all ready for his first day in his new preschool room. (Photo by Jay Sandstrom)

Finley was born with Alagille syndrome, and as I’ve written, he’s had and will continue to have struggles with his weight and growth. When your liver struggles to process fats, growth will be a struggle as well. He’s been following his own growth curve and is doing as well as our doctors can hope for, but he’s still just off the Centers for Disease Control and Prevention’s growth chart for his age range.

He’s now 3 years old, and clothes don’t have the impact they did when he was entering the toddler stage. We struggled to find clothes and shoes to accommodate a child who had abilities usually reserved for kids much larger than he was at the time. Finding hard-soled shoes when he was learning to walk, for instance, was basically impossible.

Shopping stress

But now that Finley is big enough, those problems have largely gone away. What’s remained is the stress about clothes that we internalize as his parents.

Because his growth is slow, we can often get away with keeping an item for a relatively long period of time. Which is a great thing! It saves some money and makes some shopping easier; for example, it’s easier to pick a nicer, quality jacket that’ll last longer instead of worrying about him sprouting out of it within a few months. But what we’re running into now is that we’re buying him the same size season after season.

Clothes remind me that my child has a rare disease, one we can combat only so much. The helplessness of the early days of Finley’s life has largely dissipated, but that feeling will never disappear completely. It feels silly to think that way, I suppose, but sometimes it’s hard to recognize when those feelings are going to rear their head.

Finley enjoys the park in his favorite rainbow shoes. (Photo by Jay Sandstrom)

While clothes shopping brings Finley immense joy, for me it brings up those challenging feelings. Thankfully, it’s easy to focus on his joy and expressiveness during the process. It can be a good reminder that, despite the diagnosis, Finley is going to have as amazing a life as he can. And I’ll do everything I can to provide that.

So when we go out to the local mall and take Finley to the shoe section to pick out another pair of his favorite Vans’ slip-ons, I’m going to focus on his feelings and not my own anxieties. That’ll make the moment fun and celebratory. I remember getting to wear new shoes out of the store, and how exciting that was when I was his age.

Raising a child with a rare disease is tough. Finley’s issues are part of our daily lives, but — for now, at least — only in minor ways, such as his medicine and nutrition. So when the big, looming scary feelings reenter the picture, I’ll be reminded how life can feel beyond my control. I’m trying to stay focused on the good things. And Finley’s joy over back-to-school shopping should be a source of celebration, not worry.

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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