Moy Moy’s disabilities revealed themselves to us gradually – partly because we just didn’t know much then and partly because, in addition to the Cerebral Palsy she was born with, she has a degenerative condition which has progressed slowly over time. Once we had the CP diagnosis, we settled into it (almost gratefully: at last! something concrete!), only to discover that there was more ahead.
The Cerebral Palsy we were told about when she was four became confused and bewildering even to her doctors when she was six and things just kept deteriorating. Because CP isn’t supposed to be progressive. The damage is done at birth and doesn’t get any worse with time. But Moy Moy was clearly regressing – losing skills (she lost running, walking, standing, even sitting; she went from full sentences to phrases, then single words, until finally even babbling disappeared) almost before our very eyes.
That’s when I started reading about the five stages of grief: Denial. Anger. Depression. Bargaining. Acceptance.
The first three, most of the time, didn’t seem relevant to me. For many years now, I have shuttled back and forth between Bargaining and Acceptance.
And mostly, lucky for me, and lucky for Moy Moy, I am in the Acceptance Mode. That’s just my nature. I don’t get any credit for it. Every now and then, I do find myself Bargaining (I’ll build an empire for kids with special needs. You give me back my one special kid.).
But I don’t do that very often. Acceptance, ZINDABAD!
Yet, acceptance has layers. And the stages of grief are not just someone’s theory. And I forget both these things regularly and realize them both again with a thud and a crushing stab of pain – as if I am learning about Moy’s disabilities for the first time.
A few weeks ago, I was in Delhi for a government meeting. The task we had been given was to come up with a screening tool to identify kids with developmental disabilities early. Almost in passing, a member of the group spoke of the usefulness of the clenched fist with thumb inside as a sign of brain damage. He spoke of how important recognizing it could be and how we could train village health workers to look for it.
I remember smiling to myself because while I had never heard about this, it sounded like something Dadiji might say. It sounded like Foot Reflexology or acupressure – an old wives’ tale. But when I got home a few days later, I noticed with a stunned and hollow sense of horror that Moy Moy’s left hand was curled tightly shut and her thumb was on the inside.
I checked with my personal expert and she confirmed that the guy at the meeting had been right: a clenched fist with thumb inside was a sign of brain damage.
So that means, I heard myself saying to myself, that Moy Moy’s brain is damaged. Moy Moy’s brain has been injured.
I know just how silly this sounds. Moy Moy is 23 and we first learned of her brain damage when she was 4. I’ve lived with this knowledge for 19 years. I’ve been taking care of this young woman as you would for an infant for 19 years. I know her brain has been injured.
But that day I knew it from another angle. That day another door slammed shut (another door I hadn’t even known existed! The thumb inside the closed fist, forsooth!).
Mothers like me always secretly hope we are wrong. Maybe if we add it all up one more time, we’ll come to a different result. Maybe there’s another way of looking at this whole thing. Maybe we’ve just missed one tiny clue and everything is about to miraculously change.
We do this. Is it denial? Is it Magical Thinking? I don’t know, but when I saw that little thumb snug and tight in that little fist – that thumb and fist which up till that day had just been Moy Moy’s own way of holding her own hand – I felt my heart break a little, one more time.
“Oh, Mom.” I imagine her thinking. “Poor Mom. It’s ok.” Look at her sweet, reassuring smile. “Don’t worry, Mom. We’re all in this together. We’ll make it through.”