“Here we go waltzing down lullaby lane…down lullaby lane we go. On our way to sleepy time town, waltzing down lullaby lane…” I came across this song by Tanya Goodman on the internet this week and it brought me back in time—down lullaby lane.
Seventeen years ago, I moved to NYC and began a full time job as music therapist at a sub-acute care children’s hospital. My patients were infants through teens, some of whom were getting better and going home…and others, well… on my caseload were all the children in palliative/hospice care. I did a lot of work with families and siblings, wrote songs and played them at many memorial services.
I worked with a 12 year old girl named Danielle who had encephalitis and could not sit up… her eye lashes fluttered when she was happy, which was typically when her mom visited and when I spent time with her playing guitar, xylophone, and singing. Her mother made a special thank-you quilt for me that I still cherish, and I can picture them both like it was yesterday. I had a young patient named Dustin who wasn’t expected to make it past 6 months of age…he was six years old when I worked with him. He spent his final days at this hospital, but spent them full of music which filled him with joy…his dimples emerged when he was happy, and his breathing became more consistent, less labored. Sometimes with an exhale, he even vocalized on pitch. A two year old named Joseph, a.k.a. Jo-Jo, became my shadow until he was too weak to get out of bed. Then I shadowed him. His eyes lit up whenever I brought my guitar into his room. These children didn’t have time for me to think about long-term goals… instead, they taught me to understand the importance of each moment and the power music therapy had on their quality of life—if only for a week, or a day, or an hour.
There were two boys on another unit who both had spina bifida. One was a little guy who used a wheel chair, and one was a big guy who used a roller bed. Their daily highlight was racing down the hall on their wheels—the one who made it to the end of the hall before I sang a particular line in a song won. And a young female patient who always came up to my office to play piano was also wheelchair dependent. She had cerebral palsy…she couldn’t walk but had relatively good control of her arms and hands, and she sure could talk! She also loved making music and I loved how her beautiful fingernails tapped the piano. And there was a 13 year old girl who had a traumatic brain injury—she had to re-learn how to walk, talk, write, eat…I often worked with her in co-treatment with the speech therapist or the physical therapist…music motivated her to sing, which was more interesting than talking and ultimately helped to improve her verbal language use. The music also motivated her to move, so the physical therapist had an easier time getting her to stretch and attempt difficult motor tasks when we were able to co-treat.
During my tenure at this hospital, I had a patient named Philip who rocked my world. He was diagnosed with fetal alcohol syndrome and was in and out of the hospital regularly for feeding tube maintenance, medication, and therapies. It turned out he needed a daily dose of love, too. I provided Philip with daily music therapy during each of his hospital stays, from the time he was almost a year old (and the size of a typical 4 – 6 month old child) until about 2 ½ (then the size and cognitive level of a 12 – 15 month old at best). The medical staff in the infant nursery noticed that his oxygen saturation increased and his heart rate decreased whenever I sang to him. He was less irritable during this time and remained relaxed enough to finally take a nap after having music therapy—on our way to sleepy time town, waltzing down lullaby lane…his favorite song happened to have been Lullaby Lane by Tanya Goodman. Philip had tactile defensiveness- meaning, among other things, that he did not enjoy being touched. His occupational therapist recognized his love of music and the relationship it allowed us to develop, so she requested that I co-treat with her—it was the only way Philip was willing to be touched, which was essential to the therapy. His muscle tone strengthened and by his later stays he was pulling himself up to a stand. One day, I walked into his room in the toddler unit and he called out “mama.” I almost fainted. He had never spoken before, and while he often looked directly at me, smiling, and wanted to be held more often, I hadn’t realized (or hadn’t accepted) the depth of our relationship at the time. I truly loved this child and wanted to take him home with me. His mom had lost custody and he was in the foster care system. Before I could convince myself that my feelings were too strong, I was laid off along with hundreds of other hospital staff due to budget cuts. I was able to visit before Philip’s last discharge- a few weeks had passed but he remembered and reached out for me. It was a special goodbye. I found out that day that he would be going home with a new family—he had been adopted.
I’m so lucky to have had these opportunities as a professional…as a human being…to make a difference in someone’s life through music, whether it is for a moment or for a lifetime. I often wonder where some of these children are now, and how they are doing. Music is so powerful… so powerful that more than 15 years later, whenever I hear Waltzing Down Lullaby Lane I choke up a bit, and then I smile, thinking about Philip and the other children for whom music therapy played such a tremendous role.