How Finley’s older brother is beginning to understand Alagille syndrome
We have worked hard to teach Jackson about his brother's liver disease
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When you have a child with a rare genetic condition, you realize quickly that there’s no blueprint for raising their siblings.
When my son Finley was diagnosed with Alagille syndrome in 2021, his brother, Jackson, had just turned 3. Even though things have normalized over the years, I am still learning as I go when it comes to teaching Jackson about having a brother who lives with Alagille syndrome.
Early on, the hardest part for Jackson was that his parents were barely around. Finley was born a month premature and spent two weeks in the NICU, which meant we spent a lot of time at the hospital while Jackson stayed at his grandma’s. He was a mess with this routine. I was also a mess, for more reasons than one.
Routines and relationships
Jackson holds his brother, Finley, for the very first time. (Courtesy of Jay Sandstrom)
When we finally did get to go home, we had a few weeks of normalcy to adapt to our new four-person family, and Jackson got to have mom and dad back under the same roof. While he wasn’t exactly interested in his little brother, he could at least see that he existed instead of just being told about him.
But when Finley had to be admitted to our local children’s hospital, our lives were thrown back into that old routine from the NICU days.
Because only one parent was allowed due to COVID-19 protocols, Dani stayed with Finley overnight, while I picked up Jackson in the evenings.
That stay resulted in Finley’s Alagille diagnosis, which led to his treatment journey that’s been proven to be effective over time. Finley is currently doing great and is all set to start kindergarten in the fall.
Over those five years, Dani and I have worked hard to teach Jackson about Alagille syndrome, and what it means for Finley to have liver disease. We want him to understand why Finley is going to likely be taken out of school for doctors appointments more often than he will ever be.
Brothers Finley and Jackson enjoy a game of mini-golf. (Photo by Jay Sandstrom)
The boys are now old enough that Jackson is able to administer Finley’s medication, and that’s become a great teaching opportunity and a way to get Jackson involved.
Over time, this has led to deeper conversations, and most recently, it’s helped prepare Jackson for questions that may come up when Finley goes to school.
And while I’ve seen some flashes of jealousy from Jackson when his brother is taken out of school to go to the doctor, he has already become somewhat practiced at answering questions from other kids, such as “Why is your brother so small for a 5-year-old?” I am very proud that he is more than capable of answering questions like that.
They sometimes fight like brothers will and sometimes drive their parents insane, but the boys have a great bond and I know Jackson will be a wonderful mentor and protector for his younger brother.
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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