Long before he became a health care executive, Rick W. Merrill was a West Texas boy with a guitar and a love for music. Today, he’s the president and CEO of one of the largest pediatric health care systems in the U.S., but music still holds a special place in his heart.

On this extraordinary episode of Raising Joy, Mr. Merrill opens up about his love for songwriting, parenting children through challenges, and leading an organization with empathy and compassion. He also shares a song he wrote, which was inspired by Cook Children’s Joy Campaign titled, “Hope is Just a Breath Away.”

This is an episode you don’t want to miss.

Raising Joy is part of Cook Children’s Health Care System’s Joy Campaign, a communications initiative aimed at preventing youth suicides. For more information about the Joy Campaign, visit cookchildrens.org/joy.

New episodes of the Raising Joy podcast will be available each Tuesday. It is currently available on all major streaming platforms including Apple, Spotify and Google Podcasts.

As Shea Ingram makes her rounds up and down the halls of Cook Children’s Medical Center, she pulls behind her a red wagon filled with musical instruments, from guitars and ukuleles to pianos and drums. Ingram is one of two board certified therapists who use the art of music as a way of healing.

“I like to talk about the role of a music therapist as using music to achieve non-music goals,” said Ingram. “Everybody has some sort of relationship with music, but what makes music therapy different is the relationship between the therapist and whoever they’re serving. We are targeting specific goals and we’ve been trained to use the tool of music in order to achieve those goals.”

Ingram has nurtured the music therapy program since its inception nearly a decade ago. The program falls under CARPE, the Creative Artist in Residence Programme at Cook Children’s. This program, made possible solely by donated funds, gives kids the freedom to express themselves through various creative outlets such as music.

“We know that music can be utilized in a lot of different ways,” said Creative Arts Program Coordinator Carri Ann Wantuchowicz. “It certainly can help reduce stress and anxiety and is also a form of expression if kids want to talk about the music and the lyrics of songs that they like. That’s one way a music therapist can enter into their world and get to know them. They’re also welcome to write music and express themselves that way and record things here, so I think there’s a lot of different ways it can be utilized.”

In addition to the music therapy program, Cook Children’s houses a complete broadcast and recording studio for patients and their families. Recording studio producer Raymond Turner sees the way music helps these families every day.

“We have patients who come down here and this becomes a very therapeutic space for them,” said Turner. “It’s amazing to see the transformation when they come in here and get their hands on an instrument they know or something they’ve always wanted to play when they’ve never had a chance to touch anything like that. It’s pretty amazing.”

The recording studio is a unique space in that it allows the whole family, not only the patients, to connect with music in a way that is meaningful to them.

“What really surprised me is seeing parents connect,” said Turner. “I think that really shows the lifeblood of this place, that it’s not just about the kids and their siblings, which is really the focus and what it was intended for, but the unexpected response we’ve had from parents who come in has been incredible.”

Music’s ability to heal reaches people of all ages, from the smallest babies to fully-grown adults.

“So whether it’s a premature baby that can benefit from some gentle stimulation or if it’s a young adult who would actually benefit from writing and recording something, we try to provide all those different opportunities for them here,” said Wantuchowicz.

Ingram believes her role as a music therapist is as more of a facilitator between the child and the instrument than between herself and the instrument.

“A common misconception is that I’m going into these rooms and performing for these kids,” said Ingram. “Obviously there are times when that is appropriate, but I prefer to get them engaged in making it and participating in it physically, so that they’ve got something that they’re doing rather than just sitting there listening to me.”

In the NICU, music therapists work with some babies on becoming more tolerant of positive stimulation, as opposed to the negative stimulation that they get on a more regular basis. Other babies who aren’t at that stage yet work on relaxation and calming so that their bodies can get to a more restful, at-peace state.

School-aged kids work on music making in order to get them comfortable enough to interact with people, deal with their fear and anxiety or just physically move.

“We’ll have drums and go on parade around the halls just to get their bodies moving,” said Ingram.

But for teens, fiddling around on an instrument is not quite as therapeutic as the things they might say and start sharing while they’re doing that.

“A safe place for a lot of them seems to be talking about what kind of music they’re listening to,” said Ingram, “and you start learning a lot of things about them that way.”

Turner has also witnessed the way patients use the lyrics of songs as a means of self-expression.

“For a moment, they can forget about what they are going through and be able to express something that’s really deep within them,” said Turner. “They’ll do it through music. They won’t necessarily talk to you directly, but when you hear them sing or rap or whatever the case may be, you realize there’s a lot going on inside of this person.”

Ingram says that music is a kind of therapy in disguise.

“I very rarely, especially with the school-aged and adolescent population, introduce myself as music therapy,” said Ingram. “For me, that word automatically changes the tone of a relationship. I’ve got my goals and targets in mind, but they don’t necessarily have to know that we’re doing therapy. And I think it can change the tone of the results of the situation a lot more.”

The goals and targets of music therapy differ with each child, but the reaction when a child reaches that goal is always priceless.

“I get to be present and part of the moment where the parents pull out their phones and take pictures because they’re seeing their kid look like their child again,” said Ingram. “They’re getting to see that personality and that energy come back out through the music interaction. That right there validates everything, and that happens daily.”

With all the validating moments and triumphs that music therapy brings, the program is facing a major setback.

“We can’t meet the needs,” said Wantuchowicz, “not even close.”

Ingram and the one other music therapist both hold part-time positions, so combined they only do the work of one full-time employee. According to Wantuchowicz, they are not able to see nearly one-third of their referrals.

“It’s not even getting to all the referrals or getting to see all the kids who could benefit from it,” said Ingram. “It’s getting to do better work because you’re not spread so thin. For almost ten years now, we’ve had to decide whether we serve more kids at a more basic level or do some real good work, but reduce the amount of kids that are getting services. So it’s this uncomfortable balance of figuring out where to put yourself in that.”

Kids who have the opportunity to experience music therapy at Cook Children’s sometimes discover they have hidden talents, and the music therapists get to discover that talent right alongside them.

“There have been times in my years here where I’ll sit down with a child and give them an instrument they’ve never touched before and discover that they have a gift no one knew about beforehand,” said Ingram. “So then they leave here with whatever they’ve endured for their medical reasons, but then they’ve got this new thing as well.”

The art of music is something that kids can carry with them and benefit from long after they leave the hospital.

“The goal of everything we do here is to introduce kids to things they may not have tried before,” said Wantuchowicz. “We give them those chances to try something new in hopes that they discover something they really like and want to continue doing beyond their time here with us.”

Her day begins bright and early around 7 a.m. with cuddles from Mommy and then it’s time for her bottle feeding at 8. Other activities for the morning include a visit from the respiratory therapist (RT) for her breathing treatment and morning “massage.” Her “massage” is part of her chest physiotherapy where they use an oxygen mask to firmly pat her on her chest and back to help expand her lungs and break up any mucus she may have. This is one of Avery’s favorite parts of the day. We love to watch her as she lies in her bed on her stomach and dozes off to sleep as the RTs work their magic.

She may also get a visit from occupational or physical therapy for a morning workout where they work on fun things like learning to put her feet in her mouth and building her core strength to help her learn to roll over and sit up. They also have taught us about infant massage and given us stretches we can do with Avery to help her with her flexibility.

After her morning workout, she has likely worked up an appetite so it’s time to eat again. This time, a speech pathologist may come to give Avery her bottle. Learning to eat after 6 months is tough, so a speech pathologist is working with us on what bottles and nipples to use, positions to try when feeding her and different combinations of breast milk and formula to use. All of these things play an important factor in helping Avery to swallow efficiently and effectively and not having her food go down the “wrong way” which can cause aspiration and an infection in her lungs. We are about to introduce her to solid foods which will be another fun adventure!

Once she’s done eating, it’s usually time for a visit from Daddy, where she likes to squeeze in her afternoon nap on his lap. All the activity from the morning often wears her out for a few hours. She is, after all, a baby who needs her rest so she can grow healthy, new lung tissue.

In the afternoon, she may get a visit from the Child Life specialist for some “smile therapy” where we work on coaxing a smile out of her or arts and crafts activities with her footprints. The music therapist may come by to sing and play music while Avery works on her babbling.

Interspersed throughout this busy day of therapy visits, eating, naps and playtime, she also receives countless visits from the NICU staff and our family, all stopping by to see her outfit of the day and get an update on how she’s doing.

The late afternoon and early evening is reserved for family time where she plays on her play mat, works on tummy time or hangs out in her Bumbo® or exersaucer. By the time Shawn and I are ready to go home and sleep, Avery is usually asleep, worn out from all of the day’s activities. After all, she has to get a good night sleep so she can wake up and do it all over again the next day.

Related links:

• Avery's story - part 1
• Avery's story - part 2
• Avery's story - part 3
• Avery's story - part 4
• Avery's story - part 5
• Avery's journey - part 6