One of the immediate side-effects of this decision for us was that we relaxed. We were no longer constantly worrying that she wasn't getting enough to eat. Before, mealtimes were a constant struggle: she was hungry and she wanted to eat but every third bite would set off paroxysms of coughing. Our doctor reckoned she used up most of the calories she took in by the very process of taking them in.
With the tube in place, we realized how many of our calories had been used up in the process too. The relief was palpable. Meals became social occasions again with Moy joining us at the table as she always had, only that now she was full and happy.
Before the tube went in, Moy, at 15, had dropped to a frightening 23 kilos (around 50 pounds). Her arms were so thin I could encircle them with my thumb and middle finger. Her hip bones jutted out so sharply you could get hurt if you accidentally bumped into them. But within three months of tube feeding, her weight increased by 12 kilos (26 pounds!).
An increase like that takes some getting used to. Although at 76 pounds, she still seemed very thin to people meeting her for the first time, to us, she appeared plump and almost roly-poly. None of her clothes fit her anymore! It took two of us to get her into her stroller!
But gradually, we got used to the new look. We even agreed that she was, in fact, still thin. Because her intake was the same each day, once the sharp rise was over, she plateaued at that 76 pounds and stayed there resolutely for almost four years. We were convinced she would never change.
But a few months ago, we realized she had again put on more weight. It was Cathleen who pointed it out - home for a few weeks this summer and seeing Moy after a year, she was struck by a difference that we, with her every day, hadn't even noticed.
A mystery! How could she have gained weight when both her activity level and her intake was exactly the same (no midnight snacks for Moy Moy!)?
We finally figured it out: over the last year, Moy's doctor, Sebastian, has been methodically and patiently experimenting with her anti-convulsant medications. By little and by little, he has played with the dosage and with the schedule, increasing one, decreasing another, all the while keeping careful records of how she was responding to the changes. And one day, to our astonishment, we realized she had gone a full two days without a single seizure. Two days became a week and a week became a month.
And, it turns out, seizures, like coughing and choking during meals, take energy. They use up calories. Moy Moy often had five or six seizures in one day. No wonder she was bone thin. No wonder she was tired and listless.
Now that her seizures are mostly under control, she is a new girl. She has gained four more kilos. Her skin glows. Her hair shines. She is more alert. (Dr Sebastian: go to the head of the class.)
But still I wonder about the space that we occupy. This young woman, who, even now, takes up a fraction of the space that most of us consider our right, who weighs 39 kilos and consumes a tiny amount of food and water to keep those kilos intact, has, against all odds, made a difference in this world - a difference which is far beyond her size, her earning power or her value to the market economy.
She's made her mark. What about the rest of us? Maybe it's just tonight, but I see it somehow in terms of space taken. My being here, in this space, means that someone else is not. Am I worth it? Am I pulling my weight? Am I playing my part? Am I doing enough?