Heroes come in all shapes and sizes. But what they all have in common is the ability to inspire. And while that strength may sometimes be hidden by a secret identity. For one of this year's Children's Miracle Network Hospital Heroes it's a strength that resounds.
It's a typical Wednesday evening. Greg and Sarah Payne have just dropped off four year old Madelyn at her weekly music class.
"I think she likes the variety of instruments that we get to play."
Through song, Madelyn learns to share her song, and brings a moment of normalcy...
"Every parent, you know, you drop your kid off at soccer or do things. We don't have that."
…to a typical routine that seems anything but.
"She gets up around 6:30. We start her G-tube feeding. We do a bunch of medication through the G-tube. Sometimes she has respiratory treatments before school. This all happens before the van comes to pick her up around 7:45...If you would have asked us three years ago, can you imagine you'll be doing all these things, it would have seemed insurmountable, but now it's just our normal day," said Madelyn's mom Sarah.
Born with brain abnormalities, Madelyn Payne developed different challenges as the first months went by.
"She has an autoimmune disorder, she has hearing loss, she has visual defects."
Madelyn is described as "medically complex" by Dr. Stephanie Niec. What that means, Dr. Niec says, is that there's no one condition that sums up everything that's going on. Instead, Madelyn's situation provides a constant learning experience--for everyone involved.
"You don't notice those things right away because our brain develops over time. So, we have a brain stem at the bottom and the rest of our brain kind of develops up. But between like 4 and 5 months of age, we started noticing that she isn't developing the way that a normal baby should develop."
A rare case, Madelyn's medical outlook may seem devastating.
"We sat in the hospital--at Children's Hospital in the cities when she was nearing her second birthday, a couple months before and I remember they said 'We don't know what her life expectancy will be. It could be months. It could be years. We have no idea, but we think what's going on with her will be degenerative.' That just kills you as a parent."
But rather than focusing on what's fleeting, "Life keeps going forward."
On October 14, Madelyn celebrated her 4th birthday with younger sister Ava, parents, grandparents, family and friends at Ecker's Apple Orchard outside of Trempealeau. A cold, dreary fall day made bright by the occasion and its guest of honor.
"She definitely puts a smile on everyone's face that she comes across."
The Payne's said, more than a curse, they consider their life's lesson a blessing.
"She's teaching us and those around us the value of quality of life and access to healthcare, and you never know what life will bring, but when you have a child like Maddy, she's really given an opportunity for people in the community to see what value there is in kids with disabilities and what things they can accomplish."
And at times when every little achievement can feel like an accomplishment, there's reason to sing. "You just take a step back and think about what used to be a big deal years ago, is now not a big deal at all." And ever more reason to celebrate life's every day moments.
The Payne family said Children's Miracle Network Hospitals have been there for them every step of the way supporting them both financially and emotionally. Often suggesting things that they say they didn't know they needed but proved extremely useful. Things like meal vouchers and gas cards for specialty visits to the cities but also palliative and respite care for Greg and Sarah. Additionally, CMN Hospital helped the Paynes purchase Madelyn's chair without which much of her daily life would not be possible.