(CNSNews.com) - “I would just worship the ground that she walked on,” said country music legend Collin Raye, talking about his firstborn grandchild Haley Marie Bell.
“Then eventually she didn’t walk,” said Raye. “Then she couldn’t crawl. Then she couldn’t hold her hands up. She would fall over. She couldn’t control her head. She lost the ability to speak.”
“This all started going wrong about four and it was a very fast downward spiral,” he said.
Haley had a neurological disorder that the best doctors in the country could not diagnose.
“Over the next six years it was just brutal,” said Raye. “It just got worse and worse and worse.”
In an interview on CNSNews.com’s “Online With Terry Jeffrey,” Raye, who has recorded five platinum albums and 16 number one songs, talked about his granddaughter, his latest album—“Through It All, His Love Remains”--and his new role as spokesman for the Terri Schiavo Life and Hope Network.
“Medically, we tried everywhere, everything,” Raye said. “Mayo, John Hopkin’s, Children’s Hospitals in Phoenix, Salt Lake City, Dallas, of course. Nothing.”
“Now, we’re out here trying to get a diagnosis, but no one is saying, ‘We can help this child,’” Raye said. “She’s not going to get any better. It was horrifying to watch how much she suffered.”
“When you looked at her, she would look at you with fear, ‘Poppy, do something. Why can’t I do this? I’m itching and I can’t move my hand to scratch it,’” said Raye. “She was totally alert and aware, but could do nothing. Her cerebellum was just basically being eaten away.”
His granddaughter’s courage and suffering inspired Raye to write a powerfully inspirational song--“She’s With Me.”
“I wrote that song on an airplane while she was alive, about a year before she passed away, as a tribute to her, just trying to describe the overwhelming joy-slash-sorrow that comes with having a child like that that you love so much that you cannot do anything for,” said Raye. “It was a celebration of her life.”
The first verse describes Raye taking Haley, in her wheelchair, to a restaurant. “She’s with me/I proudly tell the maitre de as we arrive/He seems surprised/In a clumsy moment as he looks for room, for her blessed chair/A table stares, and their eyes show only pity/As they try to sympathize/'Oh, how difficult that must be,' look away/Day after day, they will never see the joy you bring/Only happy at the times I know that she's with me."
In the last verse of “She’s With Me,” Raye, a Catholic convert, imagines himself in heaven standing before God, ready to be judged as an imperfect human being. “Lord, you have your ways, this I pray/On the day I stand before you, she’ll stand right by my side/When you look upon me, head hung down in shame/I’ll feel the blame, she’ll look at me/And then she’ll speak, in that precious voice/Don’t worry ‘bout him my Lord, ‘cause you see/He’s with me.”
The song is unabashedly autobiographical.
“Everywhere we would go, I tried to keep her with me all that I could,” he said. “If we went into a restaurant, you’d wheel in with a chair. Invariably people would turn around and they’d look, and sometimes they’d smile and lot of time they’d just look down, because they’re thinking, ‘Bless their heart, doesn’t that just--I’m glad that’s not me.’ You see that all the time.
“The whole time my chest is just beating with pride,” he said. “I’m so proud of that kid.”
Now, he knows his granddaughter is in heaven.
“She’s a perfect human being,” said Raye. “She has no ability to sin. She never knew what sin was, and couldn’t have sinned if she’d wanted to.”
“I knew we had a saint living with us,” he said.
Haley Marie Bell passed away in 2010 at the age of 10.
From his first solo album, released in 1991, Raye has been known for recording songs about social issues. But after Haley died, he especially took up the cause of defending the right to life of people like his granddaughter who have neurological disabilities. Their stories and their rights, he argues, are not adequately told and defended by the American media, and sometimes—as in the case of Terri Schindler Shiavo--not even by American courts.
In 2005, a Florida judge ordered that Schiavo be starved and dehydrated to death--issuing a decree that had been sought for years by a husband who had been cohabitating with another woman with whom he had two children. Schiavo’s parents and siblings opposed the judge's order. But on March 18 of that year, Schiavo's feeding tube was removed and the nation watched for nearly two weeks as she slowly died from calculated state-mandated neglect.
“Like most Americans, if not all Americans, I was grossly misinformed by the mainstream media as to what actually was taking place,” Raye says of the Terri Schiavo case. “You talk about spinning a story? That was one of the all-time great media spins as to the technique that was going to be used. There were so many misconceptions: ‘She was in a coma.’ She was not. She was alert and awake.”
“Since Haley’s passing, I’ve come in contact with a lot of families who have children very similar to Haley, who are totally dependent on you for care,” said Raye. “But they’re happy.”
“And you will hear people make comments like, ‘Well, they just need to put that little girl out of her misery.’ And that’s what brings the Texan out in me,” said Raye. “I want to go: Excuse me? Who’s to say if she’s in misery or not?”
Raye says there is no moral difference between withholding food from a newborn child, who cannot take care of herself, and withholding food from a neurologically impaired person, who cannot take care of herself.
“I don’t think it’s different at all,” said Raye. “They’re helpless. There are helpless people in our midst from babies on--and elderly. How about the elderly? How about soldiers who went to fight for us in the Middle East who come back cognitively impaired to where they can’t feed themselves? Do we just gas them?”
Raye sees a fight brewing in American society over the right to life of vulnerable persons who could become targets for euthanasia.
“You have to educate people and say, ‘No, we are not going to stand for this euthanasia,’” said Raye. “‘We’re not going to stand for a government panel or a hospital panel or just some soon-to-be-ex-husband or soon-to-be-ex-wife determine if this person gets to live or die or not.’”
“No one has the right to take someone’s life from them. Period,” said Raye.
To fight for this cause, Raye signed on in September as a national spokesman for the Terri Schiavo Life & Hope Network. The network is a non-profit organization, founded by Terri Schiavo's family, the Schindlers, to help provide resources to families like their own who find that a loved one’s life is threatened by euthanasia.
“It is a network of resources around the country--meaning attorneys and physicians--who are committed to helping families like the Schindlers, not if, but when these things happen,” said Raye.
“Thank God they’re doing it, because who else is stepping out there?” said Raye.
Noting that many people may not have the money to defend a loved one in court, he said: “Most people don’t have tremendous resources, and something like that happens and they go, ‘What am I going to do? This isn’t right.' Well, now there’s a number you can call and get online and find and someone immediately is going to say, ‘We have an attorney in your area who will go to bat for you tomorrow. Today.’”
In addition to serving as a spokesman for the Terri Schiavo Life & Hope Network, Raye is also helping the group raise money. Some of the proceeds from his new album-- “Through It All, His Love Remains”—will go to the network. The album, released Nov. 7, is primarily dedicated to religious songs and hymns, including "Ave Maria" and "Amazing Grace," but also includes a remake of his Top 10 Hit “Love Remains,” as well as two new Collin Raye songs, "Undefeated" and "I Get What I Need." It is on sale directly at www.hisloveremains.com.
“It’s a record that I’ve been wanting to make for twenty years,” says Raye. “I always wanted to make an album of hymns, and especially a lot of Catholic hymns that I have always just loved so much, that have affected me.”
He dedicated the work to Haley Bell.