My granddaughter Kendall was born fourteen years ago with multiple genetic disorders, such as Chromosome 2q deletion, a chromosome abnormality that results in developmental delay, intellectual disability, behavioral problems, and distinctive facial features; and, Waardenburg Syndrome a rare genetic disorder most often characterized by varying degrees of deafness, minor defects in structures arising from the neural crest, and pigmentation changes.
My daughter, actually the entire family, was devastated – there was no advanced warning; all the pre-birth signs had been perfectly normal.
Kendall laid in an incubator for the first week of her life. During that time, we learned that she was deaf in one ear. It was unclear if she had any hearing in the other ear. She had a white streak that ran through her hair, dark brown, like her dad’s. The doctors said that her developmental would most likely be limited, but added that, given the rarity of her conditions, nothing about the future was clear.
How does a father comfort his daughter when her dreams for her only daughter are so rapidly, and cruelly, dissipated? And, what would become of this sweet little baby?
I grew up in a time when kids with genetic disorders, like Down syndrome, were mostly shuttered away and when kids in wheelchairs were made invisible by our mothers telling us, “Don’t stare.”
Would Kendall be treated like any other kid? That was difficult to imagine.
Within her first two years, Kendall had multiple operations. One was to open her skull as there wasn’t sufficient room for her brain to grow – it was years before she would allow anyone even to touch her head. Despite all her problems, she was a very sweet baby. Would she grow into a sweet young woman?
In Lucca I noticed that children with varying degrees of disability weren’t hidden away; they were out and about. Differently-abled kids and adults were, like most Italians, beautifully dressed and treated just like anyone else.
One day, during a walk on Lucca’s magnificent wall, I saw Mario, most often referred to as Mario the Music man for his proclivity to walk about town with a music box, the volume turned up high to announce his comings and goings. Everyone in town knew Mario.
Mario was, I guessed, somewhere in his sixties, slight with grey hair. He was somewhat hunched over and clearly developmentally challenged. He carried his boom box with him wherever he went, stopping in the city’s pasticcerie where he would attempt to do two things: kiss the ladies and gain a handout. I was struck by how kindly the Italians treated Mario.
When he leaned in for a kiss the women smiled, stepped back and laughed. But never was it a mean-spirited laugh. It was gentle, friendly and a laugh that said I beat you this time. But sometimes Mario got the kiss he longed for and they laughed then as well, as if acknowledging his little victory. I was very taken with the man who I would learn had a long list of Facebook followers. Mario always had a smile on his face, a big smile and the Lucchesi, with whom I was falling in love, appeared not only to accept him, but to honor him. As I walked the wall, my thoughts drifted from Mario to Kendall and I hoped she would be treated so well.
Around the time Kendall turned three, Donald and I made the decision to spend the winter in Lucca. It was, given that in winter there are almost no tourists, an opportunity to live, and feel, much like a Lucchesi.
It was a few days after Christmas. The city’s holiday lights were taken down, the store decorations removed and the skating rink and the Merry-Go-Round at Piazza Grande were dismantled. Donald and I had woken up to a bleak, rather grey day.
As usual, we went to Pasquinelli for breakfast and shortly after we sat down, we heard a commotion outside. I turned to see what was happening. It was snowing, heavily, unusual in Lucca. Immediately, both Donald and I darted out the door and ran up onto the wall. Oh, mio Dio, it was so lovely. We walked along the top of the wall. I noticed someone had carved into the snow on a park bench the word NEVE in big bold letters, as if we needed written evidence that snowflakes, the size of Ping-Pong balls, were falling and sticking to the ground. The surrounding mountains, covered in white, looked like giant marshmallows, while the city below shimmered in the white.
A few days later, with the snow melted, Donald and I took an afternoon stroll through town. As we passed Pasticceria Pinelli we heard music coming from Piazza Grande. Curious, we walked over. In place of the skating rink there was a large stage, with a sign reading Karaoke. A hundred or so people had gathered around the stage. Donald and I listened as a woman, perhaps in her mid- to late thirties, sang, abysmally, a rendition of Kelly Clarkson’s Since U Been Gone.
I was reminded of an earlier Christmas concert we had attended just outside Lucca, where an all-Italian choral group sang O Holy Night, pronouncing each English word phonetically. The result was a stilted rendition of the beautiful carol. The woman on the karaoke stage sang in the same affected manner. A teenager followed her and he too mimicked the woodened approach, bastardizing James Blunt’s, You’re Beautiful.
Donald and I were walking away when I glanced back to the stage and saw Mario the Music Man, with Boom Box in hand, walking to the microphone. I nudged Donald and we hurried back to the staging area.
Mario began to sing. He had no sense of pitch or timing. His voice was low and gravelly. It took me a while to realize he was singing La nostra vita, by one of Italy’s most celebrated singers, Eros…Eros Ramazzotti. Mario sang the last few lines of the first verse, il mio futuro vivrò lo custodirò, con la forza che sento in me; è un sogno che non morirà mai (I will live my future; I will take care of it; with the strength I feel inside; it’s a dream that will never die). As Mario carried on, hundreds of Lucchesi rcame rushing, seemingly out of nowhere, onto the piazza, making their way to the stage. The crowd grew to four or five hundred. Mario’s voice began to fade. As it did, the crowd responded by clapping rhythmically. A man from the audience shouted, “Continua Mario. Rimani positivo.”
A woman I presumed to be the emcee grabbed another microphone and joined Mario on stage. She had the voice of an angel and together Mario the Music Man and this kindhearted woman sang the song of hope, of a dream that will never die, of a life in search of a smile, of one that is both hell and paradise; where one can find hope and a never ending dream for a better world (è il sogno mai finito di un mondo più pulito.) The crowd burst into applause. Tears rolled down my eyes. We were in the presence of something very, very special.
For days, I thought about Mario and every time I did I pictured my granddaughter. I prayed that those around her would always rimanere positivo and embrace Kendall just as the Lucchesi had held Mario on that auspicious, winter day. In fact, it occurred to me that this was how all human beings should treat one another. Mario and his fellow Italians had given me a new definition of what it means to be kind. I felt resilient, optimistic.
It was an optimism that, many years later has paid off. Kendall, at fourteen years of age, is still sweet as can be; she is a young woman, albeit with many development issues, who after many years, has learned to speak fairly well, even says ciao now and then, has a great sense of humor, is kind, and is the biggest cheerleader for her two sports-crazed brothers that anyone could be. Neighborhood kids and her schoolmates treat her just like the Italians treated Mario.
Kendall is one very happy teenager and Donald and I are two happy grandfathers. As her mom so poignantly writes in her occasional blog, the blessings and joys Kendall has brought to each of us are unimaginable. I am grateful that from the Italians I could glimpse how we can, and should, treat one another. And, I am grateful that my sweet granddaughter, Kendall, is in my life. For many, many people, she makes life better.