It’s 9pm, 24 December, in northern Virginia. We’re driving very slowly, looking for a place to park. The sight and sounds of Christmas—bright lights, the smiles of strangers, high-pitched, childish laughter, surround us. We seem far, far away from the grey, dreary day we’ve had, and for the moment, from the never-ending news cycle of murder, mayhem and massacre.

Suddenly, the lovely strains of Silent Night on the radio make my eyes well up. I want to sing alongside, but as I begin to sing, I begin to weep. All at once, I’m thinking of my father, who, like me, loved this song, and my daughter, who, unlike us, will probably never hear it, sing it, or feel it. Suddenly, I desperately want to sing it for her, with her. And I weep for what I can’t have.

My husband takes my hand and stops the car. We look behind. Kyra is oblivious to the sudden tension, or my wish for her. She is laughing at the raindrops on the window, very happy to be out of the house and on the road, even for a little while. Wyly and I smile, we can’t really help ourselves; she cuts a swathe through our innermost, darkest shadows, and reaches straight into our hearts with her sunshiny cheer.

It’s hard to believe it’s only been two weeks since her last surgery, her second in a month. I was really worried about this set of procedures. She’s had surgeries before, major ones, but the last lot was three years ago, when she was two, and she’s a very different person now. She’s far more aware, she remembers things, makes associations and has decided opinions. But riding on a wave of love and support, from friends and strangers who’ve become involved in her life, she’s taken it all really well.

Kyra sits in her chair at John Hopkins, ahead of surgery, her Christmas-red shoes staying on till the last minute.
Kyra sits in her chair at John Hopkins, ahead of surgery, her Christmas-red shoes staying on till the last minute.

I pause as we pass a brightly lit shop window. I wonder, idly, if it’s open, or the lights are just a teaser. After all, it is Christmas Eve and in the US, that seems to mean most stores are shut, as people go home to those they love. Wyly pulls me along, but I look back, wondering; I’m a sucker for bright shiny lights and I really want to know if that store will have something for Kyra. We’ve got her a bunch of things, but I’m still strangely dissatisfied. My husband, ever wise, looks at me, “She has enough." Rationally, I know that. But I’m not rational about some things, and I want to make up for all that she goes through by getting her that special something more, with a need that borders on desperation.

Christmas time, these last few years, always does this to me. It is the best of times, and the worst of times. I’ve always loved Christmas, the story behind it, the spirit behind it, and the celebration of it with family and friends who are family. Yet, it also fills me with a strange melancholy, a feeling of dread as it approaches. It’s getting increasingly hard to find presents that make sense for Kyra. Have you ever noticed how so many children’s toys depend on sound for so much? Or how music adds so much depth to life? Or how the movies and memories of our childhood are the ones that were filled with song and noise and laughter?

You never know what you take for granted, until you realize what it’s like to not have it. I didn’t realize how much I took sound and hearing for granted, until I realized my daughter could not hear. The sad part is, she could at first.

Every now and then, I find myself still looking back at a little video recording we have of her at five months, laughing at the tinkling sound of a little silver rattle, a gift from my parents. In the video, our (then) chubby baby is silent, watching, waiting for her grandma, who’s traveled from Texas to New Delhi for Diwali and Kyra’s Hindu naming ceremony, to shake the rattle. It is duly shaken, and Kyra begins chuckling joyfully. It stops, she stops, and then it all begins again. It always makes me smile, our sunshine before the storm, before the pain and fear and silence, as different parts of her little body began acting up, one by one.

It was somewhere between the wonderful colors and light and cornucopia of sound that was Diwali, that October in 2009, and her first Christmas in Texas two months later, that something inside her brain decided to kick in and go silent. It was at Christmas that we realized something was really wrong. We have never had a “hearing" Christmas with her, so this time has always been bittersweet.

We’re home, and tired, but the balloons are in party mode.
We’re home, and tired, but the balloons are in party mode.

As she sits in my lap, cutting that swathe through my shadows, she picks up her baby rattle, lying near me, and smiles so beautifully, clearly remembering, and exuberantly shakes it. She takes my hand and puts it on the rattle, signaling I should shake it. I do, and she chuckles.

Suddenly, other thoughts fill my head and heart. Kyra wanting to be set down so she can walk up to the giant Christmas Tree at the Johns Hopkins hospital lobby. Her obsession with this little foldable sparkly tree, which became our traveling companion and saving grace three years ago, when we lived out of hotel rooms in different cities for two-and-a-half months. Her helping me redecorate our tree at home when she returned from hospital, and then silently staring at it in utter fascination for hours, pushing away anyone else who approached. There’s no question she’s possessive!

The joy on her face when we brought out red and green and gold wrapping paper and handed her a roll to play with. Her taking a break from brandishing that roll like a sword, and climbing into daddy’s lap to rest and recuperate instead, cheek to cheek with him. Dragging along a large pink Christmas stocking, the word Princess emblazoned across its center; smiling and clapping to All I Want For Christmas Is You because I was smiling and clapping; dancing with me, snug in my arms, as I hum Let It Snow and her father grins at his “girls".

The guard on Kyra’s right arm, to prevent her pulling out the IV in her left, is frustrating. But she still manages her balloons.
The guard on Kyra’s right arm, to prevent her pulling out the IV in her left, is frustrating. But she still manages her balloons.

I’ve decided, once and for all, that no Grinch, nor demon inside my head, can steal Christmas from us, or Diwali, or anything else. We’re going to make our own special traditions every day. We’re going to decorate and redecorate her trees anytime we please. We’re going to walk in the drizzle, look at the bright lights and hold hands while she skips in between. And we’re going to sing out aloud but also hum in our heads and dance, after all, there’s music in silence, you just have to find it and listen.

As I write this, I reach into my pocket, to touch that silver baby rattle. It’s always there with me, my lucky talisman, a reminder of a beautiful past, and a beautiful present. Merry Christmas everyone, and may you have a peaceful, joyous New Year.

The Moppet Show is a blog by Kadambari Murali Wade about her experiences of bringing up a child with multiple special needs. Read the previous blogs here.