Real Heroes, Part 1: Our Liver Kids

For those of us who live in the world of liver disease, we speak often about those who’ve impacted our lives for the better.  These people are our heroes.  I’m starting a series this week about these heroes. The first three segments will cover my own personal journey and a bit of Sarah’s story. The follow-up segments will include other liver families who’ve graciously offered to share their own stories. I hope to see you here often and feel free to chime in with your thoughts and comments.

REAL HEROES: OUR LIVER KIDS

It may seem odd to include the very ones most affected by the myriad of pediatric liver diseases. After all, they are often infants and toddlers. How they could be heroes? Ask any parent of one of these kids and you’ll discover why.

One of the most eye-opening things I witnessed during our journey from biliary atresia through transplant was Sarah’s strength and joy. You could never tell she was a sick by her behavior or sunny disposition. She always had a charming smile ready to brighten someone’s day. She wanted to play and see other people. And she loved her siblings so much.

Our kids exhibit qualities many adults struggle with or lack: perseverance and the ability to adapt to any given situation. Adults like to fool themselves into believing we can adapt to any situation but our liver kids resemble chameleons. Need to be poked several times per day for labs? No problem. Sarah reached the point she’d hold out an arm and say “pokie”. Have to sit there in the bed and be poked & prodded by doctors checking out their tummy? No problem. She’d just flash her trademark smile and generally let them do what they needed without complaint. These kids don't see uncertainty in their future, only the possibilities.

These little warriors seemingly ignore what lies before them, insisting that each day IS precious and to be lived to its fullest. We can learn so much from their determination and their unwillingness to give up. These kids are small but they fight well beyond their stature. I have yet to meet a liver child who doesn't have a beautiful and charming personality. It's almost like they're more concerned about the people caring for them then they are about themselves. That's love. That's strength. And those are only a few things that make them heroes in my mind.