Hear the Hope: Creating Songs with Patients and Caregivers
Music means different things to different people. That’s the beauty of it. As a professional guitarist, it’s always been a part of my life. More recently, it helped me through some difficult moments.
It also brings people together. I’m always amazed at what can happen when people bond over music. That’s how Hear The Hope started – I happened to be jamming with a friend of mine, Toby Christensen, and he invited his friend, Chris Lah, over to join us.
As the three of us were jamming and talking about our lives, the idea for Hear the Hope was born.
Today, Hear the Hope is a charitable organization that raises money to help patients with out-of-pocket medical bills. We do this by creating professionally recorded music with musically-inclined patients and medical professionals.
You see, my youngest son Hudson has Down syndrome. We found out right around the 27th week of my wife’s pregnancy. The news hit us pretty hard. The fear of the unknown is overwhelming and scary. We learned that he had some intestinal issues and a heart defect, but had to wait until his birth to determine how quickly he would need surgery.
After he was born, he was transported to Cincinnati Children’s within the hour. He had an annular pancreas, where the pancreas grows around the first part of the small intestine, just below the stomach. As a result, he couldn’t eat. He had surgery within the week to correct it.
We also learned that Hudson had a ventricular septal defect (VSD), and would need surgery to correct it. VSD can cause complications such as pulmonary hypertension. He wound up having open-heart surgery to patch the hole when he was seven months old.
Hudson spent is first 23 days in the Neonatal Intensive Care Unit (NICU). This may sound like a long time to most people but it’s short compared to many of the little ones in the NICU. We went through an emotional process to gain the perspective that we were the fortunate ones. Hudson would be there for a few weeks and then we would be on our way home. It broke our hearts to see many of the kids around him who were critically ill and long-term patients of the NICU.
On top of that perspective, we felt grateful for the financial advocates that helped us navigate insurance and medical bills. Because Hudson has Down syndrome, he qualified for the Children with Medical Handicaps Program (BCMH). The advocates worked with our insurance, BCMH, and utilized Cincinnati Children’s Charitable Care Fund, which helps families with out-of-pocket medical expenses.
I felt so grateful for the care that Hudson received and the financial advocates’ assistance that I wanted to do something to give back. To impact others’ lives positively like ours were.
Flash forward to late 2015 when Toby, Chris and I were jamming. Chris Lah just happens to be the senior director of Customer Service at Cincinnati Children’s, and the one who created the Charitable Care Fund.
As I was talking about Hudson, we started making connections. The idea for Hear the Hope really sprouted from there. It wasn’t really one person’s idea, but rather the culmination of connecting the dots between us. Things are meant to be when they come together naturally.
We eventually founded Hear the Hope and created two main goals: to raise as much money as possible for programs like the Charitable Care Fund, and to release a monthly song created by patients and caregivers. We’re proud of the first released song by Roger Cornwall, MD, and one of his patients, Ed Leach. Toby Christensen and students from Melodic Connections were released next, and my song is featured for the month of March 2017. You can listen to and download each of these here!
If you’re a patient or caregiver and interested in getting involved musically, visit our website, HeartheHope.org. Musical experience is not necessary! If you reach out to us and explain what your interests may be, we’ll connect you to a song or project that fits.
As for Hudson, he’s had some difficulties recovering from all of the viral illnesses going around this winter. But otherwise, he’s doing well. He enjoys playing drums and lights up when listening to the music we’re producing in the studio. He spreads joy wherever he goes – always smiling, waving and laughing – which is music to my ears.