Siobhan Marroquin’s singing cuts off mid-verse, stopping her hands against the strings of her ukulele. With her son Joey, 3, propped up behind a keyboard in front of her, she frets that his older sister Grace, who’s visiting with her father, isn’t going to like such a slow tempo.
Lindsay Zehren, a music therapist with Sorrento Valley-based Resounding Joy, sits cross-legged with a guitar on the floor next to them both. With reassuring tones in her voice, she gently strums the chords they’ve been piecing together over the past few months.
They cycle through the verses another time, settling somewhere closer to mid-tempo. There’s an unspoken urgency: Joey was put on hospice last month.
“We know the challenges aren’t over, but we’ve got what we need,” they sing together. “We have our love, our faith, and we’ll always be a family.”
The session Saturday morning in Marroquin’s La Mesa apartment — cramped full with an array of musical and medical instruments — wouldn’t have been possible if not for the continued growth of the Ariana Miller Heart of a Child Concert, which funds music therapy programs at Rady Children’s Hospital. Ariana had flourished under Resounding Joy’s care even as she succumbed to congenital heart disease. After she died in 2008, her parents Jeff and Anita Miller wanted other young cardiac patients at Rady to enjoy the same support Ariana had. Since 2011, the concert has funded music therapy for more than 1,000 families and has become a top showcase for San Diego’s most accomplished young musical acts. This year’s concert will be held Saturday, April 22.
The $70,000 raised last year enabled Zehren to give home therapy to five families a week instead of only two. But still, more than 100 families languish on the wait list.
The Marroquins were one of the families lucky enough to make it off that list. They’ve made the most out of their sessions with Zehren, building a close rapport over their three months of work to craft their family song.
Zehren leads them through other songs, too — Light of Mine, Twinkle Twinkle, If You’re Happy and You Know It, and the like. If she lingers too long between songs, Joey vocalizes a sound — yearning and meek — that they’ve come to recognize as his way of saying “More.”
Joey suffers from an extremely rare chromosomal disorder that affects his heart function, breathing, hearing and motor skills. His type of cerebral palsy all but robs him of control over his body. His communication barely rises above the most rudimentary levels. But from their very first session, his mother had no doubt that it was taking effect.
“You could see it in his eyes. That first day, having the different instruments in his reach, he just lit up in this new way,” she says. “Lindsay noticed it, I noticed it, the nurse noticed it. The nurse and I were teary-eyed and starting to cry. Grace was like ‘Wow, Joey’s really playing, mommy!’ It was this amazing moment of realizing we had found something to reach him with.”
Over the sessions that followed, Zehren honed a package of songs right for them — music that lets Joey reach out and gives his mother and sister a way in.
“He’s just really blossomed in the last few months,” she says. “Despite going physically downhill, emotionally and mentally he has gone so tremendously forward. It’s really helped him feel like he can have more trust in a world that isn’t geared for kids like him.”
This is the Joey that she’s going to remember, the joyful boy with the indomitable spirit in the pediatric ward at Rady’s, unsoured by infections and one painful procedure after another, smiling and cooing at doctors flabbergasted by his resolve, the kid with the Pink Floyd t-shirt whom nurses at Rady’s nick-named “crazy legs” for his penchant to thrash gleefully anytime music would strike up in the ICU.
“He’s just this sweet, unrealistically happy guy, despite all he’s been through,” she says, watching warmly as Zehren shows Joey a lollipop-colored hand drum, which he nuzzles, his face bending into an unmistakable smile.
“You’re amazing,” Zehren says, half-singing, her face tenderly approaching his. “You really are.”
Doctors don’t know how much time Joey has left. His mom admits it’s probably less than she had hoped. But Zehren will be back next week, and the week after — for as long as Joey is physically able. If circumstances allow, she’ll record them performing their song together — a legacy project Resounding Joy does with many of its families.
When Joey’s light does finally go out, his mother will play the song at his funeral.
“It describes him and describes Grace and their special bond so well,” she says. “It’s been such a gift to be able to share that with them, to have something that Grace and I can always —”
Her voice trails off. She looks again at her son.
“Music,” she says, “music is eternal.”
This year’s Ariana Miller Heart of a Child concert starts at 7:30 p.m. Saturday, April 22, at Irwin M. Jacobs Hall in Sorrento Valley. Food trucks open at 5:45 p.m., followed by a reception and silent auction at 6 p.m. Tickets are available at www.resoundingjoyinc.org/event/heart-of-a-child/