I am not a musical person. I don’t have a good singing voice, and my pitch and range are both embarrassingly bad—so bad, in fact, that I didn’t even make sixth-grade choir tryouts. When I was young, I tried out a few instruments, but I was never any good at those either. I gave up orchestra when I finally realized a shameful truth: My ear for music was so abysmal I couldn’t even tune my own violin.
There’s a special kind of irony that someone like me now lives in a house where music plays such an essential role. Most children with Rett Syndrome are especially sensitive to music, and JJ is no exception. It’s one of her most critical ways of learning about the world, connecting to others, expressing emotions, calming herself, and passing the time. My youngest daughter and music are so inextricably linked that I can’t imagine one without the other.
Music is bound up in the very way she is learning to communicate. JJ acquires vocabulary almost exclusively through song lyrics. I’ll explain what something means to her as we listen to a song together, and then ask her to show me when she hears it again. She does so by going still and widening her eyes or by giving me a proud smile. I love watching my daughter’s receptive vocabulary build upon itself like this, as she recognizes more and more of the words around her.
Often, JJ is not content to learn isolated words or phrases. She wants to know about the entire story a song tells. As I do my best to explain, JJ’s face lights up with excitement and joy. She doesn’t like looking at books—perhaps because her vision is so poor—so music is her way of experiencing stories. I often catch her listening intently, entire body still, eyes staring off into the distance in concentration. It’s magical to watch her like this, absorbing new information. It’s why I try as hard as I can to unravel the convoluted lyrics to her favorite songs. It can certainly be a surreal experience. Before I became a mother of a child with Rett Syndrome, if someone had told me that one of my duties would include explaining the meaning behind Elton John’s Tiny Dancer to a four-year-old, I wouldn’t have believed them.
JJ has a few words and sounds—ones she has practiced over and over again—and continues to maintain them primarily because they allow her to request music. Hey stands for Hey Jude. Be can be a request for Let It Be or the Beatles in general. And Play simply means, play music for me. Once JJ makes a request, I narrow it down to the specific song she wants by making her answer yes/no questions with her eyes. Some of JJ’s best communication moments have come about because she was so driven to listen to one of her favorite songs.
Music is also the way we encourage JJ to do the things we need her to do. If we encourage her with her favorite songs, she will take bites of her food, swallow her medicine, and go to bed with a minimum of fuss. Because it’s such a powerful motivator, music also plays an important part in JJ’s physical health and her ability to hold onto the skills she has mastered. With the promise of the right songs, she will walk down the hall in physical therapy, make laps around our living room, and push buttons on her gait trainer.
When JJ was in the hospital recovering from brain surgery, I rocked her for hours, soothing her by singing along to familiar lullabies. When she is sick, upset, or simply bored, my daughter can always find distraction through music. It’s her failsafe way of passing the time, calming herself, and finding comfort.
JJ is someone with very little language. Because of this, she cannot put words to any of her moods. But music can act as an outward expression of the thoughts and feelings trapped in her silent body. She can spend a considerable amount of time refusing songs until I finally stumble upon the right one. I think she does this because she wants to find one that fits her current frame of mind. Depending on the day, she has preferences for music that is fast or slow, familiar or new. It’s her way of cueing us in to what’s going on beneath her surface.
Time and time again, I hear parents of those with Rett Syndrome mention their children’s intense love of music. Of course, I can’t speak for JJ or anyone else with Rett, but this makes complete sense to me. Music gives people who don’t have words a certain kind of voice, as well as a way to express their moods and feelings. It’s also a dependable and easily accessible pleasure. If, like JJ, you can’t speak, walk on your own, use your hands, or see very well, you can still enjoy music. No matter what my daughter can or can’t make her body do on any given day, she can always be still and listen.
My daughter’s taste in music has also given me insight into her personality. When JJ’s older sister was her age, I was forced to listen to the Frozen soundtrack so many times I thought I was going to cry icicle tears. Thankfully, JJ’s preferences are much more eclectic and palatable. She enjoys a variety of club and pop music, but also likes the White Stripes, Imagine Dragons, and the odd hit from Will Smith or Vanilla Ice. Classics like Elton John, Led Zepplin, and Tom Petty are a staple in our home, and a day doesn’t go by without at least a dozen Beatles songs. All in all, JJ has pretty good taste. She’s also got a great sense of humor and a natural rhythm that has her rocking along with the beat. Music allows her to be whimsical, to surprise us in new and unexpected ways, and to fill our house with joyful sound.
JJ often connects to other people through music. I couldn’t possibly count up the hours my daughter and I have spent snuggling in the living room armchair, adding new songs to our various playlists. JJ loves to rest on my lap, body propped up on my bent knees, eyes trained on my face, as I sing along to our music. It’s also how we integrate JJ into our activities. Her favorite times are often the family dance parties during which we blast songs the girls love through the living room speakers. JJ’s big sister bounces on the trampoline and JJ watches from her gait trainer, body moving along to the beat.
Most importantly, music has become the unexpected conduit through which I teach JJ her own worth. One day, while she was watching me sing with a wistful smile on her face, something blindingly simple occurred to me. She could sing along with me. Not with words, of course, but I’m learning that words matter less than we think they do. “Why don’t you sing with me?” I asked her. “You can do it too.”
My daughter got very still and looked at me as though I’d grown another head. Clearly, the thought had never occurred to her either. I don’t always know what my daughter is thinking, but there are some moments when I can read her as easily as words written across a page. I knew in that moment that JJ was ashamed of her deep wordless moans and bellowing screeches. She was worried that they would sound ugly, that they wouldn’t come anywhere close to the beautiful melodies she loves. This did terrible things to my heart, so I continued to encourage her. “I like your voice,” I told her. “To me, it’s pretty. I love your sounds because I love you. Come on, let me hear you!”
JJ remained unmoving, confusion and disbelief written across her face. As I watched her watching me, I had another terrible flash of insight. My daughter doesn’t think her voice is worth listening to. So I spent another few minutes coaxing her—telling her she was beautiful, promising her how much fun we would have together, admitting how out of tune my own voice was. Finally, I succeeded. JJ gave me a wide smile, opened her mouth, and shouted with unbridled joy. And, yes, the sound was discordant—painfully close to a bellow. Some might have even called it ugly. But to me, it was one of the loveliest things I’d ever heard. Because it was the sound of someone who knew they were loved, who realized their own worth, and who was simply having loads of fun.
JJ and I continue this tradition of singing along together every night, both because I never want her to doubt herself again and because it’s a thoroughly enjoyable way to end the day. I administer her nightly medications before we have our usual tussle over her toothbrush, and I settle her onto my lap. Then I pull up a few of our favorite songs on my phone, and off we go. JJ shouts excitedly along to the music, while I do my best to stay in tune and remember all the words. (Spoiler alert: I don’t usually succeed). Nobody is going to offer us any record deals anytime soon, but that’s not the point. Our nightly sing-alongs are less about sounding good and more about showing each other we’re not embarrassed or ashamed of ourselves.
Neither my voice, nor my daughter’s, will ever sound the way it’s supposed to when we sing. But that doesn’t matter. We’re still doing one of the most important things one can with music. We’re sharing it with someone we love.
In what ways has music affected your family’s life? Does your child have a special relationship to music?
Let me know in the comments below.