It's been a week since I posted, a week filled with managing things related to my first ever trip to the ER (unless you count the time when I was seven and didn't know this: if you are on a sled, and about to hit a tree, you can jump off the sled before you hit the tree). It's a little like being with John because it is a mix of bureaucracy, surprisingly inconclusive Western medical treatment, and surprisingly effective alternative/complementary medicine. Even though I have (usually) enjoyed using alternative medicine for 15 years, sometimes I am still taken by surprise when it works, and yes, it probably has something to do with hitting the tree.
Thankfully, John did fine with being out of the spotlight for a week. He is busy copying words he hears us say and using material that must have been held in storage in him, like "Doe do dat!" and "Wha a big biw-di!" One of my favorites is what he says in anticipation when he is about to receive some dry Cheerios to eat: "I may a big meff!"*
During this time I've been stuck as this writing is at a small crossroads. I've set the scene now, and there are any number of directions to go next. It would seem obvious to go forward, but that's not actually why I started writing. I need to describe the gifts that came in the past 4 years, not just a varied line of future. I honestly don't know how, or where, to do that. And there's more - all the other questions that initially stopped me from writing, made me attempt to think, and finally seemed to disappear? They didn't disappear. To whom am I speaking? Knowing that I will always be presenting an angle, what will it be? How can I say a single thing that I really want to say, without offending someone or inciting argument and criticism? What if my family reads all this stuff? All the professionals who I will no doubt appear to myself criticize at some point, and the bureaucracies? How can this come out to more good than bad?
I remember two things from long ago, scenes that, fortunately, I didn't fully digest at the time, because I will need bits of them for a long time to come.
The first: I was in a meditation group many years ago. We sat, and then there was a time for questions. Someone had been at a retreat with Zen Master Seung Sahn and they were unsure about what he had advised them. After recounting the original story requiring the advice, they said, "Zen Master Seung Sahn said, 'kill your parents.' What does that mean?" The answer and discussion filled the question period.
The other: I was at a meditation retreat. It was a silent retreat, but every few days we would have a short interview with one of the teachers. Without telling the whole story, I found the assigned meditation nearly impossible, and the teacher was most calm and gracious with my questions. One of the last things she said was to tell me the completely new-to-me story of Buddha meeting all of the temptations of Mara, ending with (as she presented it) doubt, and the Buddha's final statement, "The earth is my witness." I didn't understand it, I didn't understand it one bit, but I was blown away, and it somehow made it possible for me to settle into the retreat.
Practical questions are good, but doubt is doubt. Not being at the end of lots of maidens and waves of fire being thrown at me, I'm going to assume that the doubt and the accompanying questions are going to continue for a long time, and I'm going to have to find a way to sit there while they go on.
My favorite blogger is my favorite because they are so completely unapologetic.
I'm not sure why all these people are out there blogging as parents of children with special needs. I mean, don't answer that. It is a category, but within that, I'm just starting to learn what's out there and seeing what there is that I can feel between two fingers. We are trying to meet it, and there seem to be many whys for the different people who are meeting each different "it" of each child in what seems to be an epidemic of kids who didn't come out as one would expect. If the blogging is only a social thing, then I don't understand, and probably have a corresponding diagnosis pending, not caused by the tree.
When I was in graduate school (only briefly, but it was prestigious while it lasted), we reviewed the practice of ethnography, and in one book there was a mildly disparaging reference to something called "confessional ethnography," which as described, sure sounded better than some of the alternatives. As I recalled this in the context of thinking of special needs blogging, I went and read the ethnography entry in Wikipedia. I'm probably wrong, and I'm not going to go and take three classes to find out, but it seems first that ethnography is not as special as it thinks it is, because it sounds a lot like other things I've heard of, "writing" being one; and second that we are many just confessional-self-ethnographers out here who were thrown into an unknown situation and are writing about it. Maybe it's ethnography when we talk about new worlds in medical care practices or insurance/doctor/etc outrages, and just plain writing many other times.
We are writing about it and not just living it. In many, in most places there is no or was no writing about it. Writing is a luxury. We would find other ways without it. You know the bumper sticker with the Audre Lorde quote: "Your silence will not protect you."? We can be out of silence without writing, and we can stay in silence while writing. The fact that I am writing about the writing questions swimming around me doesn't mean I am facing them. That is a moment to moment thing.
*Don't do that, What a big building, and I made a big mess.