Moy Moy used to talk: coming to terms with the degenerative disorder my daughter lives with

Moy Moy, wearing pink, sits next to Jo, who is kneeling next to her. Jo is looking into the distance and smiling.
Moy Moy and Jo.

I can still recall the last words I heard her say.

My daughter Moy Moy used to talk. A degenerative disorder snatched the child she once was away from us when she was only eight (or nine, or maybe seven — who knows? It all happened so gradually it is impossible to pin it down).

The disorder was never diagnosed. We tested her for everything that was treatable and were then left with only a bunch of extremely rare disorders.

The doctor told us we could keep testing but all we would get would be a name — there would be no treatment. So we stopped, partly because the tests were very expensive, and partly because still being in testing mode made it harder for us to accept our new reality.

Most people who know her now have no memory of how she once was. She is 27 today, nearly 28, and she stopped talking when she was eight. (A devoted little group still remembers how she used to be. We tell the stories of her former self often to keep the memory green.)

Eventually, Moy Moy stopped walking too.

So we bought her the first of her many wheelchairs, a major concession to her mobility issues and to our discomfort. It’s not easy to admit that your previously active child can no longer move on her own. You put it off, you pretend, you hope you are just imagining things.

We invested in a fancy ‘jogging’ stroller, telling ourselves that she got tired just a little more easily and needed a break at times. We supported her walking more and more, pretending to each other and to ourselves that she wasn’t really leaning any more than usual, even though from one month to the next she went from needing just one person beside her to not being able to progress unless there were one on either side.

Swallowing became more and more difficult for her — not because her throat muscles didn’t work but because her brain could no longer send those muscles the messages they needed to receive. Every meal was an ordeal.

And when she was 15, we finally broke down and had a tube inserted surgically in her tummy so that we could go on feeding her. We put that off, too. Meals had gotten longer and longer, and fewer and fewer foods would go down.

We experimented with different textures and combinations. (She loved pakoras and Vikram, who works for us, would bravely fry them up every evening at 6 pm on the dot; omelettes were another option and my husband Ravi created them like works of art for her dinner every night. He would charge her the $40 he claimed they would cost in New York City and we would pay him on credit in rupees, suitably depreciated.)

But no matter what we served her, she choked and coughed so much our paediatrician guessed she was using more energy to eat than she was getting from the food.

So we gave in at last and drove the seven hours from Dehradun to Delhi for the operation. That was a good decision. Her weight, which had been steadily declining to near-skeletal levels, finally came up to normal.

Moy Moy, wearing a yellow sweater and a matching jacket, looks at the camera and smiles.

Moy Moy.

But it was the silence that killed us. Because Moy Moy used to talk. She used to tell jokes; she even had — at four — a flair for the dramatic. Once on a Sunday, I asked her: ‘Moy Moy, are you ready to go to Church?’ She raised both arms over her head like a born again zealot and said fervently: ‘Hallowed be Thy Name!’

She had a strong sense of herself. One day she found a pair of my sunglasses. She added a hat and a scarf and she emerged from our bedroom with my purse over her shoulder. Ravi was sitting in the living room and he greeted her saying: ‘Hello, Moy!’

She looked at him disdainfully and replied: ‘Not Moy, Moy Madame.

And she had a sly sense of humour. Once I found her with both hands in a katori of salt — I said, ‘Moy Moy, no!’ She looked up at me and said ‘Cake!’ I said ‘Moy, that’s not cake.’ and with a fetching little smirk, she said, ‘Fooled you!’

She was four years old.

At six, her sentences became phrases. Some time later, she only had two words at a time. Then one. And then suddenly, inexplicably, it was back to babbling. She lost her language in the exact order in which she had gained it.

As it became clearer to us that Moy was losing the ability to speak, I often told myself I should record her, that I should capture the sound of her voice to remind us later of what she had once been like.

I never did it. At the time I think it seemed like too much of a concession to reality, too much of an admission of what we weren’t yet prepared to acknowledge.

But now Moy Moy is 27 and she doesn’t speak at all. I can still recall the last words I heard her say, after the prayer I would recite for her at bedtime:

Angel of God, my guardian dear
To whom God’s love entrusts me here
Ever this night, be at my side
To light, to guard, to rule, TO _ _ _ _

I would leave the last word blank and Moy Moy would fill in: ‘GUIDE!’ with a shout of pleasure and triumph. Then she would say:

‘Goodnight. I love you.’

That response got shorter and shorter. The last time I remember actually hearing her speak it was just those two words that she chose: ‘Love you.

Whether it’s what I now choose to remember or whether it was what she actually said last doesn’t matter.

She loves us. We love her. It’s the truth and, last words or not, it’s all that matters.

Jo Chopra is the co-founder and director of the Latika Roy Foundation, a voluntary organisation for children with disability in India. She has written five books on cardiac health and hundreds of articles for Indian and international newspapers and journals. 

All images courtesy Jo Chopra.