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terminal illness

Freddie Fuller is a country and folk music singer-songwriter who has entertained audiences at venues in and around Austin, Texas. He has recorded two albums, created a one-man show on the history of the Texas cowboy, and even performed for troops overseas. But some of the most profound performances of his life have also been some of the smallest, quietest shows.

Freddie performs personalized, acoustic concerts for people who are dying.

For the last four years, Freddie has worked with a small nonprofit called Swan Songs to bring the gift of music to people facing terminal diagnoses. Freddie and other Swan Songs musicians have played over 500 intimate concerts as a celebration of life for people nearing death, as well as their loved ones.


Why music? The answer is simple for Freddie: "Music is one of the few things that we as humans will allow to touch us in the deepest spots in our hearts."

In the United States, death is usually something that stays out of sight, out of mind.

Our conversations about the end of life are steeped in euphemism, and the actual process of dying seems to happen behind a veil — usually in a hospital or nursing home facility, rarely at home.

But treating death as taboo isn’t a recipe for having a "good death." Informed, nuanced conversations about the end of life can be helpful for both demystifying death and helping families navigate their grief. And a growing chorus led by health care professionals and social workers is calling for change in how we deal with death.

Swan Songs and its musicians are quite literally part of that chorus.

Since 2005, the nonprofit has fielded requests from the loved ones and caretakers of people with terminal illnesses and cultivated a community of local musicians who can help fulfill the recipient’s musical wishes.

When Freddie joined Swan Songs, he had already had the unique experience of playing music for his mother, who had cancer, as she approached the end of her life.

"I remember getting in bed with her in her hospital bed with a guitar, and I started singing to her," Freddie said. Years later, before his father passed away, he did the same thing — this time, with his five children in the room to share the experience.

The sense of hearing, Freddie noted, is usually the last sense to deteriorate at the end of life. So even if the recipient of his performance seems unable to respond or connect, they may still be hearing the music.

A recent Swan Songs experience reaffirmed Freddie’s believe that music has connecting power.

Another Swan Songs musician, Pam, had asked Freddie to perform a particularly special concert — one for her own dying father. When Freddie arrived at the hospital, about an hour outside of Austin, he found that Pam’s father was comatose and close to death. He gathered at his bedside with Pam and her sister and began to play.

"I played for 45 minutes or so," he says. "I played the last song, sang the last note, and hit the last guitar chord, and he took his last breath. We sat there very reverently and drank up the power of that moment."

That moment spoke to the essence of Swan Songs, Freddie says. Surrounded by music and love, his recipient passed on.

Freddie put his guitar back in his case and stepped into another role: that of a comforter and a friend. It was a short, soothing moment in time during a life landmark that is often cloaked in fear and despair.

That’s what Swan Songs is all about: bringing joy, connection, and peace to death, one of the most human experiences of all.

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Aflac

Sometimes, kids who are medically fragile or facing hurdles like cancer would like to just get away from it all, even if just for a little slice of time.

Enter Dream Drives for Kids, a nonprofit that began in Portland, Oregon, and is expanding to other parts of the country.

What do they do?


First, go back to a time when you got to ride in a fancy car — say, a convertible, or something really sporty — for the first time.

Do you remember that feeling? It can be an amusement park ride of sorts, and it's one of those things that becomes a great memory throughout life.

That's the idea behind these folks. Giving kids with severe illnesses a chance to ride in these adult toys is what they do. The children get to tour the garage, pick a car to ride in, and then go out for a spin.

As the narrator of the video below (and one of the founders of the organization) says, “It's like the kids we work with are going through a nightmare, and we're trying to offer them a dream."

This boy has Otopalatodigital syndrome and has had multiple surgeries. Just look at the joy on his face:

GIFs from ILikeGiving.com/Vimeo.

Or this little girl, who valiantly battled leukemia:


“We've seen kids who've come through this garage who've been dying. We've met with kids who have since died. And seeing the joy in their eyes, and the joy in their parents' faces, when they're not thinking about being sick ... is an incredible feeling."

Watch the video from Dream Drives for Kids.