Feeding tubes rule. My daughter has had one in for six months now. She has gained nearly twenty pounds since the surgery and she looks like a whole new girl. Before she got it, it took us up to an hour to get her to drink an eight ounce glass of milk; a meal could take twice that long. In-between bites, she would have coughing spells so violent her whole body shook. Swallowing had become such an effort that our doctor reckoned that most of the calories she got from her food she used up just consuming it.
As her difficulties increased, and her weight dropped from 62 pounds (Moy Moy is 16) to an even more alarming 50, we realized we had no alternative but to have the operation done.
With the tube in place, feeding her has become simplicity itself. The system works by gravity. The tube goes straight into her stomach through a small hole in the abdomen. When it’s time for a meal, we open the stopper on the top of the tube, fit a little funnel in and pour the formula down. At the end, we flush a syringe of warm water through (doing the dishes, so to speak) and that’s that.
Of course, it didn’t start out so simply. In the beginning, we were devastated by what seemed like an invasive and unnatural new development in her life. I remember bringing her home from the hospital, where I had been brave and all-held-together, and collapsing in tears the first time I gave her a bath. The tube trailing out of her tummy made her seem like an alien or a machine, and I wondered then what right we had had to put her through the surgery in the first place. Could this be any way to live? Dependent upon a tube for nourishment? Deprived of the joys of taste and texture? Reduced to sheer function?
The uncertainty continued for several weeks and seemed to mirror exactly our incompetence and ineptitude with the mechanics of the tube itself. No one had told us, for example, that if the tube were open when she coughed or laughed, everything would spurt right up, often into our faces (playing with her food, my husband decided). Nor were we prepared for the sudden increase in output, now that she was at last being properly nourished.
It is amazing, and absolutely marvelous, however, what one can get used to. By the end of the month, we were professionals – short of doing the actual surgery, I think we could now handle just about any aspect of tube feeding that might arise. We were also grateful and proud. Parents want, more than anything else, perhaps, to feed their children. It is one of our most primal human needs and we will do almost anything to achieve it.
For a long time we had been doing our best to feed Moy Moy and failing miserably. Before our eyes, she was wasting away: every day she looked more like a starving child. It was not our fault, and we knew that, but it didn’t matter. She needed food and we couldn’t give it to her. Now, with the tube in place, we are once more able to do our job as parents. Five times a day we fill her tummy – three meals and two snacks. The sparkle has come back in her eyes and she is alert and responsive. She is still unable to speak or walk, but she communicates in other ways and we get her where she needs to go.
It is a simple life, this, stripped almost to its essence, and it makes me think deeply about the meaning of it all. Food and drink are so central – at once our most basic and most decorative involvements. Compare the hungry survivors of Hurricane Katrina, scrambling for food pouches tossed from a helicopter to the smoothly ensconced gourmet considering the wine list in a fine French restaurant. There are so many ways to consider nourishment.
But Moy Moy doesn’t consider it at all. Although her developmental level is that of a four-month-old, unlike an infant, she does not cry when she is hungry. She seems to be above it. It is up to us, therefore, to anticipate her needs and supply them. It would even be possible to forget. The fact that we never do (we who forget so many things, and more with each passing year) puts me in mind of God, who instructed us so sternly: “Why do you worry, saying what will we eat? And what will we wear? Your Heavenly Father knows you have need of these things.”
It is difficult to remember at times that anxiety is an insult to God, that fretting about the future, to say nothing of the past, is a way of doubting his providence, implying that perhaps he has fallen asleep on the job. Moy Moy’s peaceful non-engagement with the details of her care – that’s our problem – helps me to remember that I have a Father in heaven too.
