Growing old with Moy Moy

A child with a disability does put additional strain on the already challenging work of sustaining a strong marriage.

I have three wonderful children. With Anand and Cathleen, our two older ones, my husband Ravi and I have experienced all the life stages one expects when bringing up children — from infancy and early schooling to adolescence and college. We’ve watched them grow into their own bodies and achieve independence, seen them embark on their own relationships with the world, find fulfilling and challenging careers and learn to support themselves financially and emotionally.

Both of them have expanded our family for the better by finding marvellous life partners and marrying, and, in the last few years they have, each in their own way, begun to take care of us in subtle and direct ways. Ravi and I radiate joy when they are around and there is a special happiness and security in knowing they will be there for us as we age.

It’s the natural circle of life and we have been exceptionally blessed.

With Moy Moy, things have been different. Moy Moy has severe disabilities. Although she was very premature and had mild Cerebral Palsy, she had a remarkably promising early start: by the age of four, she could walk, talk, feed and dress herself and her sense of humour was sparkling and unexpected in one so young. At around five, however, Moy Moy developed seizures and began to regress. By the age of ten she could no longer speak and required help from two people to get around; by sixteen she had quadriplegia, used a wheelchair exclusively and ate with a feeding tube. She is now 28 and completely dependent for all her needs.

When I say dependent, of course, I mean on us. Ravi is 72 now and I am 60. The circle of life has not passed us by either. We are old parents to be caring for a helpless young one. Moy Moy, though not heavy by any normal standard, still weighs 100 pounds. Neither Ravi nor I would ever think of trying to lift a 100 lb box of groceries or to shift a five foot log of wood alone. Yet we routinely do that with Moy Moy. Lifting her from her wheelchair into bed, hoisting her onto the chair I bathe her in, transferring her to her stroller or into the car: we do it all the time. Though the physiotherapists gasp in horror and scold us urgently, real life is seldom convenient. Her diaper needs to be changed and no one else is around. I want go for a walk with her now and it will be dark before anyone arrives to help. So we chance the strain on the back or the knees and we get on with it.

The physical toll is the least of it. One could always hire people to complete each day’s routine. No, it’s the mind space Moy Moy occupies, the constant presence she is in our lives and the shape her needs assume in every equation. It’s the limits to our freedom, the inability — even at our advanced ages — to make decisions simply by consulting ourselves.

We never expected, Ravi and I, the kind of retirement many of our friends enjoy. We have both spent our lives working in NGOs with the predictably low salaries that choice comes with. We didn’t plan on traveling the world, playing golf or spending evenings at the club. We don’t even plan to stop working. We mean to go on as long as we possibly can and as long as we have something to offer.

But — subconsciously, I think — we did expect some lessening in intensity at home. We did expect to be able to relax at the end of the day. To read a book, watch a film or simply sit together and chat. And while we do manage to do those things, there is always a sense that we are neglecting Moy Moy; that she is bored, not stimulated enough, missing out on life.

And only we can provide it for her. We are her tickets to everything. If she is to go anywhere, we take her. If she is to see anything, we show it to her. If she is to meet anyone, we have to entertain them too. No friends ever drop in just to meet Moy Moy, without expecting us to sit with them while they visit. No one ever pops by to see if Moy Moy is up for a walk around the neighbourhood or feels like having a quick cup of tea, just by herself.

So if I’m honest, there’s a little pressure. Ravi has been saying lately that he’s reached an age where he just doesn’t want to do anything which requires effort — physical, mental or emotional. I’m not there yet, but I can see his point.

And yet, we have no choice. We will make more and more concessions to the physical because sooner or later, our bodies simply won’t be able to manage, but the emotional and the mental are trickier. So I’m in the process of training myself to be sweet. To Ravi, to Moy Moy and — most of all — to me. I’m cutting myself some slack. I’m convincing myself that Moy Moy likes watching The West Wing as much as I do. That if I want to work in the garden, she wants to sit in the shade and cheer me on. That if I want to bake bread, she wants to watch me do it. That if I have a need to be alone, then so does she, goddamn it.

This is good. It’s working out. And in the process, oddly enough, Ravi and I have become a tight little team. The myth that 80% of marriages break down when there is a child with a disability is indeed a myth, but myths develop out of lived reality. A child with a disability does put additional strain on the already challenging work of sustaining a strong marriage. The good news is that those that do survive are triumphs of creativity, imagination, loyalty, resourcefulness and the deepest, deepest admiration.

As we look after our adult daughter together like practiced old pros, anticipating each other’s moves and needs without a word being said and acknowledging all the unvoiced feelings with a glance or a quick smile, I am reminded of why I married him, how much I adore him and how lucky I am to be right here, right now, up to my elbows in diapers and feeding tubes, perhaps — but in love with a good man who is in love with me.

Courtesy: Jo Chopra

I’m not being sentimental and I’m not trying to gloss over the difficulties — either in Moy Moy’s care or in my relationship with Ravi. We get exasperated with each other occasionally and there are days which feel so long I wonder if they will ever end. But two things have happened to us because we have Moy Moy and though we probably wouldn’t have chosen them, we are better people as a result.

The first is the constant requirement to put someone else’s needs first. As human beings, this isn’t easy. And as we age, it gets harder and harder. Our physical strength declines along with our purposeful activity. Our bodies creak and ache, we become more tuned in to every little twinge because we have more time on our hands to do so. It’s a vicious cycle! The older you are and the less busy, the more likely you are to complain to anyone who will listen.

Having Moy Moy in our lives changes the focus from us to her. And that’s always a good thing. There is nothing so boring as a person concerned only with themselves. When there is someone else to think about, the world opens in surprising ways.

Leading me to the second thing that has happened to us. When Moy Moy was 9 years old, our pediatrician — alarmed by a sudden and massive increase in seizures — told us that she probably only had a few months left to live. We stumbled through our days as if in the middle of a nightmare.

One day during that dark time, Ravi attended a meeting in Delhi where he had sat around a table with 25 other people. Many of them were important government officials, eminent scientists and representatives of major funding agencies. He was so preoccupied with thoughts of Moy Moy he wasn’t able to attend much to what was being said. Then suddenly he realised — in a flash of insight — that just as nobody in that room knew what was going on in his head right then, he had no idea what anyone else was going through.

It was life-changing. It created an empathy for others, an awareness of the vast worlds contained within each human being and a realization that while we can never know unless we are told, we could — from here on out — assume that everyone was just like us: going through their own secret joys and sorrows and worthy of compassion and respect.

It’s changed our world.

People often ask me what our back-up plan is for Moy Moy. We’ve got some practical ideas and some concrete systems in place. Our other two children and their spouses are ready and willing to step in. But the real back-up plan is love. She came to us because of love (she’s adopted) and she has flourished for nearly 30 years against every prediction and against all reason because of love too.

That’s the plan and I’m sticking with it.

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.


Featured image credit: Alia Sinha