Our son, Finley, is still in nursery and we have been enjoying some back to school shopping. Although he won’t be starting a new school year, he will be starting in a new room at nursery. Why not bring him some new clothes to kick off a new year in his program?
Finley loves shopping. Picking out shoes used to be a struggle, but now he enjoys it. He’s picky about shirts and is confident in telling us what he wants. It’s fun to see him get excited about new clothes.
But some elements of this endeavor frustrate me and my wife.
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Finley is ready for her first day in her new kindergarten room. (Photo by Jay Sundstrom)
Finley was born with Alagille Syndrome. As I’ve written, he has struggled and will continue to struggle with weight and growth. If the liver has a hard time processing fat, it will struggle to grow. He is on his growth curve and growing as well as his doctors would expect, but he is still slightly outside the Centers for Disease Control and Prevention growth curve for his age range.
Our son is now three, but clothing doesn’t influence him as much as it did when he was a toddler. We struggled to find clothes and shoes that fit him, a skill only a lot older kids possessed. For example, when he was learning to walk, finding shoes with hard soles was nearly impossible.
Shopping stress
But now that Finley is old enough, those issues have largely gone away. All that remains is the stress about clothes that we as parents have internalized.
My son grows slowly, so it’s often no problem to keep the same items for a relatively long time. This is great. It saves me money and makes shopping easier. For example, it’s easier to choose a good, high-quality jacket that will last, rather than worrying that it will become too old to wear in a few months. But what we’re facing now is that we’re buying the same size every season.
The clothes are a reminder that our child has a rare disease, and that there is only so much we can do about it. The feeling of helplessness I felt when Finley was born has mostly gone away, but it will never go away. It seems silly to think that way, but it can be hard to recognize when it rears its ugly head.
Finley enjoys the park in his favorite rainbow shoes. (Photo by Jay Sundstrom)
Shopping for clothes brings great joy to Finley but brings up difficult emotions for me. Thankfully, it’s easy to focus on his joy and expression while we’re shopping. It’s a good reminder that Finley will have the most amazing life possible, regardless of his diagnosis, and I’m going to do everything I can to provide that for him.
So when I take Finley to the shoe department at our local mall to pick out another pair of his favorite Vans slip-ons, I’m going to focus on him, not my own anxiety, and the moment will be joyful and celebratory. I remember how excited I was when I was his age to walk out of the store in my new shoes.
Raising a child with a rare disease is hard. Finley’s issues are part of our daily lives, but for now, at least, they’re just minor issues, like medication and nutrition. So when the big, looming, scary feelings emerge again, it’s a reminder that life can feel out of your control. I’m trying to focus on the good, and Finley’s excitement over back-to-school shopping should be a source of celebration, not worry.
Please note: Liver Disease News is a website that provides news and information about liver disease only. It does not provide medical advice, diagnosis or treatment. This content is not a substitute for professional medical advice, diagnosis or treatment. Always consult your physician or other qualified health care 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. Opinions expressed in this column are not those of Liver Disease News or its parent company, Bionews, and are intended to spark discussion on issues relating to liver disease.
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