My son’s stubborn determination will aid him in his battle with liver disease
Finley won't let too many obstacles get in his way
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It’s truly rewarding as a parent to see the things that make your children proud. For my 5-year-old son, Finley, it’s making his bed every night.
Now, Finley doesn’t make his bed the way you or I might think it’s done — pull up the sheets and comforter to make it look nice. For Finley, making his bed means building a little ecosystem on it every night. Each stuffed animal is deliberately placed, often in a new spot each night, while a different assortment of small toys or books populate his bedside table, depending on his mood or the day’s theme. It is a fascinating look into his little mind.
Finley Sandstrom was excited to get his big-boy bed. (Photo by Jay Sandstrom)
Fun as it is to watch, it can be maddening when I want him to brush his teeth or put on his pajamas, and he would rather be working on his bed.
When he is set on that task, like most things he sets his mind to, he can be stubborn about sticking with it until he’s completed it. It sure can give my patience a run for its money, but I know it’s an attribute that’s going to help my son as he navigates life with Alagille syndrome.
Finley’s bed calls to mind other reminders of his Alagille diagnosis, however.
Reminders of Alagille syndrome
I constantly have to check Finley’s bedsheets for blood. One of the most visible reminders of his disease is cholestatic pruritus, or itchy skin, and Finley has at times scratched himself to the point of bleeding, which stained his sheets.
When Finley transitioned to a “big-boy bed,” he needed to use a stool to get onto it because of his small stature. Stools are nothing new in our house. We have them at the sinks and toilets, so adding another one for his bed was no big deal. But it’s a small reminder that, while Finley can do everything an average 5-year-old can, he still needs some accommodations.
The other day, however, the cleaners came to the house and moved his stool to vacuum the room. When it was time to make his bed, Finley couldn’t immediately find it and became discouraged as he struggled to get into bed without it. It was a heartbreaking moment for me and a reminder that Finley will always have obstacles in his way.
But when I recall my son’s stubborn determination about making his bed, I know he doesn’t have the personality to let too many obstacles slow him down. It may drive me a little crazy when I just need him to do something or to get out the door for day care, but his stick-to-it attitude will serve him well as he grows up. Sometimes, I just need to step aside and let Finley show me the way.
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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