I don’t want my son’s small size to keep him from doing what he enjoys
Right now, Finley is finding his lane, one with rainbows, bunnies, and kittens
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As a dad, I enjoy seeing my sons figure out what interests them.
I have two boys — Jackson, 8, and Finley, 5 — and both are encouraged to try new things and figure out what they like. This presents a little bit of a problem with Finley, who was born with Alagille syndrome.
Finley is about to embark on his next big challenge: kindergarten.
Trying on new things
The thing about an Alagille syndrome diagnosis is that it affects every person differently. Some people are walking around without any idea that they have it, while others have a poor prognosis from birth. Finley isn’t in the former group, but he’s not in the “poor prognosis” group, either, unless something were to change dramatically with his health.
Finley proudly shows off his rainbow drawing. (Photo by Jay Sandstrom)
Finley’s doctors say his health is stable as he prepares to head off to kindergarten in the fall, but I can’t help but be concerned as we prepare for him to take part in different activities. Finley is smaller than his peers, and no matter how his health improves, that will likely always be the case. Because Alagille syndrome impairs nutrient absorption, gaining and maintaining weight is tough for Finley.
Finley has been taking swim lessons and participating in sports classes where his size isn’t an issue, but I worry about what will happen if he wants to try out a team sport. Thankfully, when kids are young, they play for fun, and that is all I care about — him getting out and being active. But I do somewhat dread the possibility of having to tell him his size might prevent him from doing certain things, such as playing a sport.
What Finley loves right now, and puts a lot of time and effort into, is art — particularly drawing. He brings home five to 10 pages of drawings a day from daycare and has developed his own signature style, one with lots of rainbows, hearts, and animals. Bunnies and kittens are his favorites at the moment. He is so proud of his drawings, and I am proud of how excited he is about his newfound love of art.
As Finley grows, I’ll continue to encourage him to try new things. He will find his favorites, and I hope that Alagille syndrome isn’t a major factor in what he can and cannot do.
With his fiery personality, I know he won’t let that happen if he can help it.
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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