Moy Moy has quadriplegia. How did I not know this? I know the meaning of “quad” (4) and I know that Moy Moy has neither the use of her arms (2), nor her legs (2). I also know that 2 + 2 = 4. And yet somehow the term “quadriplegic” has never occurred to me in connection with Moy Moy.

Go figure. Literally. I mean, do the math. Somebody should. Because this isn’t the first time this has happened.

There they are out there, all these useful medical terms, which doctors and researchers have worked hard to arrive at and to share with the public and yet never, never, never do they seem to apply to my Moy Moy.

It began when she was 4 and I heard it from the doctor who finally, finally told me what she had. He said it was Cerebral Palsy and I remember feeling baffled and derailed. Because now, suddenly, all those endearing, distinctive, Moy Moy ways of moving were down to brain damage. The funny way she had of walking up the stairs. The signature gait. That typical, angular list to the left. The manner in which she reached out for what she wanted. It wasn’t anything special. It wasn’t endearing after all. It was distinctive, but not the way I thought. It was Cerebral Palsy. It was a Shaky Brain.

Jo and MoyMoy

Years later, I heard about the Cortical Thumb. I was in New Delhi at an important meeting of experts who had been called together to decide on things Village Health Workers should be taught to recognise as signs of brain damage. One of them, all the experts agreed, was the “Cortical Thumb”.

The “Cortical Thumb”, I learned in a flash, was not that sweet little trick which we had all thought till then was pure Moy Moy: her habit of clutching her thumb within her fist – always, regardless of the time of day or anything else she might be doing. It was not a sign of concentration, of intent, of adorable Moy Moy-ness.

No. Sorry. The Cortical Thumb was yet another sign of brain damage. And suddenly, in an instant, I was just another Village Health Worker being taught the signs.

Except that I know Moy Moy. Except that I am Moy Moy’s mother. All those signs, all those symptoms, all those boxes that get ticked when an expert sees my child? As useful as they are, they are also meaningless. Because where the experts see a syndrome, a condition, I see a child. My child. I see a person with an identity and a future. I see Moy Moy.

And this, right here, is why it is so crucial that families be involved in any discussion about anything regarding our children. And our children’s so-called conditions. Because while for the experts, those conditions are important pieces of information which help them to classify, diagnose and treat our kids, for us they are reminders, they are stories, they are evidence of who our children are.

McGowans Chrismas tree

So while I acknowledge its accuracy, it’s not helpful for me to hear that my daughter is a quadriplegic. Please don’t point out her Cortical Thumb or call her a CP victim. I know her doctors mean well and that they have her best interests at heart when they describe her to another doctor who doesn’t know her. It’s like shorthand. But to us, she’s just Moy Moy. She has a brother named Anand (his wife is Lydia) and a sister named Cathleen (her boyfriend is Daniel). We adore her. Her name is Moy Moy.

This blog originally appeared as below, on June 6, 2016: 

http://latikaroy.org/jo/2016/06/06/quadriplegia-just-a-word/