It’s Harder Than It Looks
Recently, I listened to a radio interview with Ian Brown, author of The Boy in the Moon, a memoir of his life with his severely handicapped son, Walker. Walker, like my daughter Moy Moy, has difficulty swallowing so he eats through a tube. It was surgically inserted directly into his tummy. I laughed out loud when I heard Ian Brown describing the difficulties of tube feeding a child with a disability:
Interviewer: Since he can’t swallow and has to be fed with a tube, describe what feeding him is like.
Mr. Brown: Well, (we had) to hook him up . . . it was very complicated. He’d be asleep, and we had to hang a feed bag up on an IV stand, and that was a gravity-fed thing. The tube would go down through a hole cut in his sleeper, into this little Mickey valve that is permanently in his side.
So you connect that up, and you turn the pump on, and then it would slowly feed him throughout the night. But if he woke up, and he started hitting himself, then, you know, you’ve got to do everything in reverse. You’ve got to turn off the pump, you’ve got to lock the line so that the stuff that’s in the line doesn’t come shooting out, which I constantly forgot.
You’ve got to unzip the sleeper to get into the Mickey to undo it, then take it out, out through the hole, hang it up so it doesn’t drop onto the floor. You know, then you’ve got to pick him up and take him downstairs and give him a bottle because though he can’t really swallow without aspirating, the bottle seems to calm him down a little.
My daughter, Moy Moy, has a tube in her tummy, too. And for the first three days post-surgery, we also found the whole process mystifying, challenging, and unbelievably difficult.
Then we got used to it. In three days.
Now I know how to unclog the tube when it gets stuck and how to tell when she is about to cough and spurt the contents of her tummy into my face. I know how to remove the tube and how to insert a new one. I was originally informed that this could only be done by a surgeon and the first time it needed to be changed I took her all the way to Delhi for the procedure. A 14-hour round trip by road is enough to convince me I have surgical capacities, and I learned how to do it myself. And Moy Moy doesn’t even have the new-fangled, simpler system that the Browns’ son has, with a gravity-fed automatic process or a Mickey button with a little valve.
It is e-a-s-y. Easy. Definitely easier than spoon-feeding a child who has trouble swallowing and worlds more convenient when it comes to administering medicines.
But it’s fun to shroud disability in mystery. I’ve done it too, so I don’t blame Ian Brown. The average person hearing on the radio or reading his book has no idea what tube feeding involves, so it’s simple to impress them and simpler still to create an image of parents struggling bravely and poignantly to care for their poor, disabled child. I know, I know.
But I also know that most of us parents have worked out a system. Most of us have back-ups, and safety nets, and ways to get around just about anything. At least, those of us who are writing books, essays, and blogs.
So what motivates us? Why do we like to make things sound more difficult than they are? Why do we need to make what we do seem more dramatic, more enormous, more fraught?
I think we are worried that people will forget us. I think we are afraid that because we make it look easy, people will think that it is easy.
It’s easy to pour formula down a tube—once. It’s easy to change a nappy—once. It’s easy, even appealing, to wriggle out of an event we don’t really want to attend by saying, “It’s just too difficult; I’ve got a child with special needs.”
Everyone nods; everyone sympathizes. Almost no one understands that those moments become years, that the work of a day can stretch into a lifetime and that, while taken one at a time, each act is manageable, but added up and tallied, they all amount to nothing. We feel we have nothing to show for ourselves. Nappies changed; feeds given. Years gone. Decades.
My friend, Natasha Badhwar, says, “Days are long, months feel safe. But the years, the years seem to be on the run.”
We are chasing our years, we are running after our lives, and we are hoping that they really do amount to something, that all we are pouring out for these children we love so dearly, so helplessly, is adding up to something significant.
Please forgive us when we overreach; we know we are doing it. We know there is nothing heroic about the one tube feed, the one nappy, the one night of broken sleep.
It’s the years. The years. The long, long avenue of years.