BRATTLEBORO, Vt. -- The bonus track on Gary Rosen's latest CD, ''Pet Sounds," is an old song with a new twist.
First recorded by Rosen in the 1980s, when he comprised one-half of the award-winning musical duo Rosenshontz, ''The Best That I Can" is a tune that speaks to and for children with various disabilities.
Its chorus (''Don't go feeling sorry for me/ I may be blind but I can see/ I'm gonna be the best that I can/ Yes I am, yes I am") is at once unsentimental and uplifting, personal and universal. In the past it has been adopted by the Special Olympics and Easter Seals as an anthem of courage and determination.
Today the song means something different to its creator, however, as is evident to anyone who has seen Rosen perform recently -- something deeper and more urgent than the words that came to him in a rush 20 years ago, at a time when Rosen was delighting audiences from the Boston Common to the White House lawn with kiddie-themed ditties about teddy bears on parade and cuddly caterpillars.
Performing ''The Best That I Can" during Boston's First Night festivities last New Year's Eve, a visibly weakened Rosen sat on a stool with two of his children, Lela, 17, and Penn, 15, by his side. The two teenagers shared lead vocals on the song, to which Rosen added a new verse a few months ago. It goes:
We've got a dad who's special to know
Although he's been sick, he's still doing his show
We say, don't you feel sad that you've got to slow down?
(Rosen) Oh no, not when I've got love all around
Don't go feeling sorry for me
I may be sick, but I can see
I'm gonna be the best that I can
Yes I am, yes I am
Few in the audience grasped the whole story behind the lyric, or the nature of the ''physical problems" to which Rosen alluded while introducing the song. (''Don't worry," he joked, ''it's not contagious.")
In truth, Rosen was more gravely ill than most in attendance might have suspected. He needed a wheelchair to navigate the auditorium and was too infirm to even lift his guitar case, much less prance around the stage as he was accustomed to. He never mentioned Lou Gehrig's disease, either, feeling it was neither the time nor place.
It is now, he says.
''One reason to discuss it is, people have been asking me what's going on," Rosen explains during a relaxed, four-hour conversation at his home not far from downtown Brattleboro. During the course of the afternoon, joined by his wife, Mary, and the couple's three children, Rosen comments publicly for the first time about his battle with amyotrophic lateral sclerosis, a progressive neurological disorder commonly known by its initials, ALS.
The disease has no known cure. Diagnosed last summer, Rosen has been given a life expectancy of one to four years, though that's just a guess. What's evident already is a physical decline that has left Rosen tethered to a walker and made getting up and down a staircase a once-a-day ordeal. The muscles of his right hand are nearly useless.
''I've gotten a whole lot worse since September," Rosen acknowledges.
His reasons for speaking publicly about his condition now are twofold, he says. One is that after entertaining family audiences for three decades with a high-energy show, it has become painfully obvious that he can no longer do that. The other is that having vowed to perform for as long as he's capable, with the support of his family, he realizes it's only a matter of time before the truth comes out anyway.
One of Rosen's heroes is Curt Schilling, the Red Sox pitcher, whose pet cause happens to be ALS research. A diehard Sox fan, Rosen cheered Schilling as he pitched his team to a world championship on a badly damaged ankle. ''He was doing the best he could, too, though on a much bigger stage than I am," says Rosen, who on three occasions has sung at Fenway Park during pregame festivities.
''I could easily say, 'I retire. No more concerts,' " he continues. ''But if I can sing -- and have my kids sing with me -- at a high enough level, then I can still bring people enough enjoyment to make it worthwhile. And thankfully, my voice hasn't been affected yet."
Seated around him at the dining room table are Lela, a senior at Brattleboro Union High School; Penn, a sophomore; and Eliza, 13, a seventh-grader. All have performed with Rosen since they were old enough to put on a Pooh suit. Lela, who has matured into a talented soprano, has been chosen to perform with the All-East Music Festival Chorus. Penn has starred in school musicals and recently recorded a CD with a Brattleboro a cappella group. Eliza performed in a recent high-school production of ''Anything Goes" in which her older sister had one of the lead roles.
''We never pushed our kids to do this," says Mary. ''It's something they've loved and wanted to do."
Facing what is obviously adifficult situation, all three children say they have adopted the attitude that the show must go on. It's the best they can do for their father, they say, although processing what has already happened to him physically has seldom been easy.
''How will I feel when Dad can no longer play guitar at all?" echoes Lela, in answer to a reporter's question. ''I don't really know, because I don't remember a time when he couldn't play." Smiling, she adds, ''The coolest thing about having Gary Rosen as your dad was you could always get a concert on demand."
Sounding like most girls her age, Eliza confesses to feeling ''embarrassed" by her dad on occasion. But, she says, she's also taking on more household chores as her father's condition worsens.
''I can't leave stuff on the floor anymore," she says, with mildly exaggerated annoyance.
His father's illness, says Penn, ''redefines the role you play in the family." A proud papa thereupon shows off the flame decals that Penn slapped on his walker, to jazz it up. Later, after the children have returned to school, Mary produces a copy of Lela's college-application essay. In it, the teenager struggles to come to terms with what performing with her father has taught her, then and now.
''My progression from neophyte to professional," Lela writes, ''has been in large part due to my relationship with my dad. He is my mentor, my teacher. Yet as I have grown up, there have been moments when I am the teacher; I sing the right lick and need to teach him the tune."
His illness has dictated a reversal of roles between dad and daughter, she concludes. ''His legs are weak, and it is my turn tosecure him to the ground," Lela writes. ''However, I will always look up to dad, safe under his wings. Our hearts will stay interlocked, always singing together."
Folk fringe beginnings
The son of a UMass physics professor, Rosen, 57, graduated from Oberlin College, where he played in a psychedelic band known as The Ant Trip Ceremony. (Don't ask.) He later moved to New York City, where he met Bill Shontz and formed the folk-flavored duo Rosenshontz. ''Think Simon & Garfunkel meet the Smothers Brothers," says Rosen. Modestly successful as a grown-up act, Rosenshontz got its big break when a kids' song the pair had written was featured on TV's ''Captain Kangaroo." Goodbye, folkies. Hello, kiddies.
Having reinvented themselves as children's entertainers, Rosen and Shontz moved to Brattleboro in 1977 and cut their first album in 1980. As they became more successful, they hired a backup band and graduated from school concerts to larger family shows. But it was their version of ''Teddy Bear's Picnic," a classic song in the public domain, that truly put Rosenshontz on the kiddie-music map.
By 1983, the group was famous enough to play the Kennedy Center in Washington, D.C. Five more albums and several videos followed, garnering approval from groups like Sesame Parents and Scholastic Parent & Child. But it wasn't just kids who flocked to their concerts. Adults did, too, many hauling along their beloved teddy bears.
Then came the early '90s and an economic recession. As their bookings dried up, Rosen and Shontz parted company in what Rosen describes as an unamicable divorce. Going solo, Rosen avoided doing old Rosenshontz material for years thereafter. In '93, he released his first solo album, ''Tot Rock," followed by two more albums in '96 (''Cookin', " with a guest shot by Carly Simon) and '99 (''Teddy Bear's Picnic.") Twice during the Clinton years he performed at Easter concerts on the White House lawn.
Still, he says, life as a kids' musician has not been all picnics and lollipops.
''Being a self-employed kids' musician is not easy," says Rosen, who's served as his own manager and booking agent. ''It took a couple of years to start doing well."
And a few weeks for his world to turn upside down.
Last May, an otherwise healthy Rosen began having muscle cramps. During a June concert, he tried to march along to a teddy bears' parade and lost his balance. A chiropracter told Rosen the problem was probably neurological. Then early in July, a doctor asked Rosen if he'd had any severe muscle spasms. No, said Rosen. Almost immediately, his first major spasm occurred. It was, Rosen knew from surfing medical websites, a likely indicator of ALS.
When the diagnosis was confirmed, in late July, all three children were away from home. Lela was in China, Penn at camp in Maine, and Eliza was visiting friends. Their parents decided to wait until a family vacation on Cape Cod to break the news. By then, Rosen could no longer walk along the beach without stumbling.
''It was important they heard it together," says Mary. ''And they were incredibly supportive."
Lela turned 17 the next day. Rosen performed two shows at the Cape Cod Playhouse. By then, he'd resolved to go into the recording studio as quickly as possible to make what would likely be his last album. For production help, he turned to old pal Tom ''T-Bone" Wolk, a former ''Saturday Night Live" band member and touring musician with Hall & Oates. Most of the album's 13 tracks were recorded in Brattleboro in late September. Wolk mixed the songs in October and finished production, including the new version of ''The Best That I Can," around Thanksgiving.
When Rosen, whom he's known for 11 years and whose songwriting talents he has long admired, told him about the ALS diagnosis, ''It really caught me off guard," Wolk says. ''But knowing Gary, he'll make every day count. He's got a tremendous support network and a wonderful family." Years from now, he says, ''They'll look back at this record they made and know it was extra special."
Everyone in Rosen's family continues to make adjustments. For Mary, having to cut her husband's fingernails shorter than usual was particularly hard, since it signaled the end of his classical-guitar days. For Lela, who just got her driver's license, it's been ''cool" to run errands for her dad.
Still, she says wistfully, ''Dads are usually the strong figures in the family. And he can't be that anymore."
As for Rosen himself, small victories and silver linings take the edge off some of the setbacks. No drug really helps much with ALS, for instance. Yet one medication he does take, normally prescribed for dementia patients, has paid unexpected dividends. ''I don't forget song lyrics anymore," Rosen boasts, flashing a hippo-size grin.
A non-red-meat eater for more than 30 years, Rosen was ordered to pack in more protein, too. So he marched right out and ordered a filet mignon. ''Delicious," he says, licking his lips at the memory of it.
Rosen has cut back on concert dates as his symptoms have worsened. A 2 p.m. family show Sunday at the Center for Arts in Natick, costarring Lela and Penn, is Rosen's only scheduled local appearance for what could be quite some time. Meanwhile, ''Pet Sounds" is now available via the singer's website, garyrosenkidsmusic.com. A photo of Lela, Penn, and Eliza adorns the back cover of the CD. Surrounded by a small herd of stuffed animals, they look about as happy and carefree as any three young people one would care to meet.
''That's the way they deal with it," says their father, whose own likeness graces the ''Pet Sounds" CD cover. On Rosen's head, slyly covering a receding hairline, is a stuffed white bunny rabbit.
''But," he adds about the family's emotional state, as the winter sunlight fades outside his window, ''we lose it all the time, too."
Joseph P. Kahn can be reached at firstname.lastname@example.org.