The Music is His: Randy’s Story

When asked to describe five-year-old Randy, Irene’s face always lights up, and her answer is immediate: “He is brave and strong and brilliant.”

Irene first met Randy and his mom, Heidy, when he was only one year old, as his primary home health nurse — but it was apparent to Randy, his mom, and his older siblings that she quickly became so much more than that.

“The family considers me to be Randy’s de factor second mom,” she said. “And it’s such an honor for me.”

At birth, Randy was diagnosed with Shwachman-Diamond Syndrome and given a 35% chance to live. He spent his first six months in the NICU, dependent on tubes to help him breathe and eat. His family was heartbroken and afraid, having previously lost a child to the illness.

“Even at such a young age, he was already proving he’s a fighter against the odds. I’ve learned a lot about Randy during his first five years,” she said. “He is sweet, funny, and has a loving personality.”

When Irene first joined Randy’s care team, he was growing up in an intense medical situation and was understandably withdrawn. He’d stay in the isolation room, uninterested in interacting with others.

“He was in a world all his own, disconnected from expression, and so many growth opportunities that we often take for granted in the lives of newborns and toddlers,” said Irene.

But there is a special spark in Randy, and the adults knew that they needed to find a way to help him share it.

That’s why Irene was so excited when she first learned about JoyRx. Here was a program that might help Randy come out of his shell and experience connections and expression. Randy was one of the first children on the list to sign up for JoyRx Music at the hospital, and Irene was thrilled.

“But Randy wasn’t interested,” Irene said. “Maybe it was easier to continue the normalcy of being alone and isolated. Maybe he didn’t have the energy or the ability to connect. We didn’t know for sure.”

Luckily, Randy isn’t the only one who’s persistent.

The JoyRx Music Specialists, Chrissy and Monica, switched tactics. They started bringing Randy instruments and just left them off to the side. There was no pressure — they were just there if he wanted them.

And eventually, when everyone pretended not to pay attention, Randy reached for the instruments for the first time. Little by little, he started playing music during each visit — and that’s when the transformation began.

The isolation and loneliness were replaced by connection, growth, and incredible musical talents. Today, Randy loves music. He loves the piano and the xylophone, singing and humming.

“It’s through music that he truly shines,” said Irene. “And it has sparked an entire learning journey for him.”

Every week, Randy teaches himself a new song — by ear. He plays the songs on the light-up toys he’s had since he was a baby, but there’s purpose in his play — a desire to express his feelings through melody.

Randy’s taught himself eight songs that he can play on his own: Row Row Row Your Boat, Twinkle Twinkle Little Star, BINGO, London Bridge, and more.

“How appropriate is it that the first song he ever taught himself was Ode to Joy?” asked Irene.

Now, when it’s music day, Randy is out in the common space, ready to engage with others. He plays music with his older brother, surrounds himself with instruments, and expresses his own sounds, tones, and melodies. His learning is rapid-fire, and his delight in engaging with the music specialists is inspiring.

“What inspires me is that these successes are truly Randy’s,” said Irene. “We, his care team, family, and the music specialists, let him approach this program naturally. We didn’t force the music or participation. We let the music come to him. We let him decide he wanted to participate, let music into his life, and let his life include this joy.”

And that has made all the difference. It’s why Irene and Randy’s family are grateful to JoyRx — because it gives families a chance to find the simple and powerful moments, a chance to connect, heal, and thrive.

“The music is truly Randy’s,” she said.

Randy and the San Juan family were recently honored guests at Live From the Heart Austin, a benefit concert for JoyRx.  Irene Barrow was the featured speaker and shared Randy’s story.