Savoring the everyday moments that bring joy to our lives
What I wish I'd known when my son was diagnosed with Alagille syndrome
When my youngest son, Finley, was diagnosed with Alagille syndrome, a million questions flooded my mind. I wanted to know if he’d be able to live a “normal life.” I’d never heard of Alagille syndrome, so everything felt brand new and extremely scary. Plus, finding resources that showed other kids with the syndrome living their everyday lives was challenging. I needed that to illuminate what felt like a very dark moment in our lives.
In this column, I’d like to offer some of those glimpses of everyday life to others, particularly our recent adventure to a Washington Huskies football game.
Finley cheers on the Washington Huskies football team during a recent game. (Photo by Jay Sandstrom)
Finley is 4 years old, and despite Alagille syndrome, he lives much like his older brother, Jackson, who is 7. Finley is in pre-K, rides his scooter around the neighborhood, and loves hanging out with friends. I wish I could’ve caught a glimpse of this future while we were in the hospital in the early days of his life. If I could’ve seen what things would look like today, I think it would’ve alleviated a lot of my worry.
On the day of the game, our family hopped on a train to the stadium. I grew up going to these games, so it was special for me to share this experience with my boys. Although Finley’s health has remained stable, I never take these moments for granted. Alagille syndrome affects each person differently, and I understand that at any moment, Finley’s health could change. So enjoying something as simple as a football game is a true joy for our family.
The game we attended started a bit late at night, so we knew we wouldn’t be able to stay for the entire thing. Still, Finley is our “late-night party animal,” although he has been getting better sleep lately, so everything worked out.
Cheering at the game wasn’t a problem for him, either. Finley and Jackson both enjoyed the fireworks when the Huskies scored, and they loved shaking their pompoms during every kickoff. Watching them have so much fun was a joy.
While Alagille syndrome is always present in our lives, it doesn’t control every aspect. I wish I would’ve known that when Finley was diagnosed. Unfortunately, it’s not easy to find this type of knowledge or comfort in the rare disease world. I’ll cherish special moments like going to a football game together. I’ll remind myself to not let the challenging aspects overshadow the good moments. And through it all, I’ll strive to show others who are raising a child with Alagille syndrome that there are plenty of normal moments in between all of the medicine and doctor appointments.
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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