Burke's Tour -- Devoted father shares son's story
Bob Derr said it wasn't hard to write his first book, "Burke's Tour: Ambassador of Love" - he just listened to his son.
"I wanted it to sound like it was from Burke," he said.
Burke P. Derr, the youngest of Bob's three sons, died June 17, 1997, at 19 years old. He had what Bob explained to be an "orphan disease," one that only about 30,000 people suffer from in the Unites States.
Cystic fibrosis has been the focus of Bob's life since his son was diagnosed at just a few months old. It was a condition that forced Burke and his family to overcome extreme lows and deal with rally after rally with the disease.
Ironically, Derr said, cystic fibrosis is the reason that many who live with the disease, or any terminal illness, seem wiser in their 19 or so years than someone who lives a healthy life to 100.
"I needed to write something about the young people who are in so-called terminal states who live like 'well, I might die tomorrow.' I wanted to point to the type of person Burke was and also that there are others like him," Derr said.
It was important to Bob that he let people know that even though they thought they knew how he felt, the concept of sadness from losing a presence is an individual feeling, and oftentimes there's another part that people don't emphasize.
"There's something beyond this life that's even better - I found that out through my own faith and through Burke," he said. "I wanted people to realize that, in some ways, when Burke was 12 years old, it was like he was 140. Yes, he got angry - he was a teenager - but he was easily 500 years old in spirit. He taught me so much and continues to guide me."
The book chronicles the heart-wrenching moments of diagnosis, through the spirited life of Burke Derr, his favorite song and the decisions he made based on a favorite excerpt from the Pittsburgh Children's Hospital's newsletter, "To Remember Me."
To Bob, Burke was very much the best teacher he'd ever have.
"The night before Burke died, he had been napping and I was standing in the room. He started stretching and kind of groaning. I said, 'Burke, are you all right, do you need something?' And he said 'Nope, I'm hungry. I want a ham and cheese sandwich.' Who knows how much time he has and he wants a ham and cheese sandwich."
Bob said it was that attitude that Burke shared throughout his entire life and the "don't worry about the past, don't worry about the future" lesson that he wanted to pass on.
The final chapter of the book was one Bob said he struggled with, not with its content, but with the question of its inclusion.
As a grieving father, Bob knew some people looked at him as if he were a little mentally unstable when he said he could feel Burke around him and even sometimes encouraging him and helping this mourning father through the grieving process.
"That was Burke - still teaching," Bob said." 'C'mon, Bubs! I'm still here and I'll always be here, and you know that! Be happy for me - multiply it times one million - and we can talk whenever you want.' "
It was a final visit to a psychic friend that convinced Bob that he was not crazy.
"People always mention that they knew the person was there - a favorite perfume, cologne - a feeling of knowing and talking with that person. I thought it was important that there are other people who have these experiences, although some are still skeptical."
Burke's legacy lives on through the many organizations and fundraisers recounted on the final pages of the book.
The Boyds Bear named in his honor; Pennsylvania Cystic Fibrosis Inc., the organization founded by Bob to help Pennsylvania families and individuals who are affected by the disease; the Million Dollar Bear Campaign and Burke's Tour; and the words of a devoted father reach out to help people find happiness and peace in every moment - and joy in the little things.