Moy Moy's journey

Nearing the end

Ten days ago, our pediatrician told us that our little girl, Moy Moy, aged ten, probably has only a few months left to live. We have always known her life would be short, but hearing it put in terms of months left me feeling desperate for air. In these gray nightmarish days, I have to consciously fight the panic that keeps overwhelming me: Driving, I find myself suddenly gripping the wheel so tightly it hurts, stunned once again by the reality of the doctor’s words. Buying vegetables, I stand staring at the carrots in a trance, unable to remember what they are or why I am looking at them.

I can’t count the number of times I have sat down to write this column-always about something else-and been unable to proceed. There is nothing else. In my life, the only thing that matters right now is that my daughter is dying.

I spoke with her godfather on the phone the other day and he said we had to make the most of the time we have left. "Don’t get distracted," he warned me. "She can teach you everything you need to know."

This is true, and though it worries me sometimes that I may be deifying her, when I need guidance now it is not to God that I turn but to her (in spite of the fact that she cannot speak and has the mind, they say, of a six-month-old). I reflect on her life and I find all the answers I need.

Some of them, obviously, concern her. When our doctor brought up the question of tube feeding, it was Moy Moy who helped us to decide that it wasn’t the right thing to do. Before she began to decline, she was the biggest eater in our family. She loved food, and just the mention of her favorites would send her into raptures (pumpkin pie, we would whisper, and watch her squeal with delight). As her illness progressed, she became less and less interested in food, closing her mouth emphatically as the spoon approached and turning her head firmly to one side. But the words still elicited the old response. It mystified us. We would ask her if she wanted ice cream and she would literally shout with joy, but when we tried to feed her, she would clamp her mouth shut and refuse even a tiny taste. Finally my husband realized that the words probably sparked a happy memory for her and it was that she was responding to. The actual food was now meaningless.

This understanding was, for me, an unexpected gift, a small glimpse into the realm Moy Moy now occupies more and more fully. She is dying to us, but she is also coming alive in an entirely new way, entering a world in which the mundane things we believe are so important are actually dispensable. To force her to continue to partake of them when she is so clearly moving on to "real food" seems to me to be an insult to her and the journey she has begun.

I received another answer very late one Saturday night. My husband and I had planned a trip the next day to the small mountain town of Mussoorie, an hour from where we live. We were going with a grim task in hand: We wanted to make the arrangements for Moy Moy’s burial in a cemetery there. (In India, because almost everyone is cremated, cemeteries are often horribly neglected places. The one in Dehra Doon, where we live, has hogs running wild through it and homeless people sleeping on the tombs. The one in Mussoorie, which has a large Christian population, is beautifully maintained and very close to the place where Moy Moy’s birth parents live.)

That night, after everyone had gone to bed, I sat on the couch thinking about the next day’s plan. All of a sudden it hit me that it wasn’t a theoretical discussion-it was real. We were going to dig a hole and bury her, put her little body into the ground, cover it with earth and leave her there. She would be alone, she whom we had cherished and protected for ten years. I began weeping and soon was in such a state I could not stop. I didn’t think it was possible to cry for so long. It just went on and on in shuddering sobs and I found it difficult to breathe. What finally calmed me down was remembering Moy Moy. I pictured her, surprisingly, not in a peaceful moment, but in the middle of one of her really bad convulsions.

What happens when she has a seizure is that her whole body, especially her face, gets contorted and rigid. Her arms and legs jerk uncontrollably and her eyes roll back in her head. But painful as it is to watch, we often end up laughing and hugging her because even in the midst of it all, there she is trying to smile at us. It was that small smile, that brave effort to comfort us that came back to me as I sat on the couch lost in grief, and the lessons it conveyed were almost too deep for words.

It told me that the pain would come, often and hard and in inconvenient places (Moy has had her seizures everywhere-in trains, on the road, in church, in stores, and she simply submits to them), but that it would stop and that happiness was still possible. It told me that even in the worst of times, remembering those around us and what they are going through, makes the worst get better. And it told me that there is a core of self that we keep in spite of what happens to us and that it is up to us to choose who we are.

The last lesson is perhaps the most important. Since the very beginning, Moy Moy has been a charming and enchanting child. She draws people to her in some mysterious way that none of us has been able to understand. As her dependence on others has increased, her sweetness and winning ways have, too. Taking care of her now means changing diapers, wiping drool, administering pills, holding her through seizures, and carrying her. But in spite of these difficulties, there has never been a shortage of willing helpers, nor do any of us consider it a burden.

She has been one of the great joys of our lives and the reason, I believe, is love. Her godmother asked me a few days ago what I thought Moy Moy’s purpose in life was and the answer came to me so quickly I hesitated to say it for fear it was too glib. But in fact, it was an answer so deep and so true it came to me as easily as if she had asked me my name. What Moy has done has been to show us that love can redeem anything. With none of the gifts the rest of us take for granted-speech, mobility, intelligence, freedom-she has nonetheless transformed her world.

She gives love constantly and unconditionally, and she receives it in the same way: without comment or expectation or judgment. Watching the way she accepts what people have to offer has taught me that giving and receiving can be the same thing and that one begets the other. But even more important, it has taught me that there is nothing else worth doing, nowhere else to go.

Published in the 1999-10-22 issue: 

Jo McGowan, a Commonweal columnist, writes from Deradoon, India.

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