Sunday, January 25, 2009


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.

Saturday, January 17, 2009

Quote for the day

from Healing into Life and Death
Stephen Levine
pp 39-40

What a miracle to send forgiveness and love into that which we have so often met with fear and loathing. To meet our pain and illness with loving kindness instead of hatred and anger brings a new trust in life. It allows the confusion that often constellates about discomfort to release its suffocating grasp. It offers an alternative to suffering. Each time we allow a merciful awareness into our discomforts is like standing at a crossroads. Not far to the right we can see the tension of confusion. But we notice just beneath our feet something quite amazing, the state of mind that precedes this great amplifier of pain. We discover the presence of bewilderment. .... We allow bewilderment in rather than compulsively running toward the confusion which turns life into an emergency. Investigating this bewilderment, as if for the first time we become "complete beginners" and notice an alternative: another road branching toward the spacious pastures and open vistas of "don't know." Toward a willingness to open to the old in a brand-new way. To take whatever teachings the moment provides in a deepening of our mercy and awareness.

The Korean Zen Master Seung Sahn often tells students to "trust that don't know." It is the space in which all wisdom arises, in which alternatives are to be discovered. ....

The difference between confusion and "don't know" is that confusion can only see one way out and that way is blocked, while "don't know" is open to miracles and insights. Pain often calls out for immediate conclusions. The mind implodes--force closes the heart. In confusion we are so far away from our selves; in "don't know" we are right there watching, fascinated. To enter our pain with mercy and love is to change the whole world with a deepening trust even in the unknown.

Friday, January 16, 2009

The size of one rabbit

One of the gifts I've received while being John's mom is an increase in caring; in appreciating how everyone has difficulty and pain because those things are simply part of life; and acknowledging that we all, often, fall short of what we hoped, tried, or were expected to do, and a little slack cut for us goes a long way. When I say increase, I mean a huge increase, not because I possess those qualities in huge quantities, but because my abilities to begin with in the areas of caring, appreciating, and slack were practically undetectable.

Today is Friday. On Wednesday night and most of Thursday, I was in the ER and the kids were at home with their dad. I'm okay and the rest of it will go into a different post. While I was there being checked out, I did think of my family frequently and told everyone who walked into the room that I needed to get out of there because I had to get back to them and especially to helping John. I did miss them, and I was sure happy to see them when I was finally released to freedom. There was some caring in there, but much of my desire to get out was not from caring but from a sense of duty, and I only discovered how much this morning when I went to let the rabbit out.

Fluffy the rabbit lives in a cage in the kitchen. It's the biggest cage that would fit anywhere in our house, and it fit her best when she was supposed to be a dwarf rabbit. She was an unexpected gift, actually, from a neighbor to big sister last spring. She was young and small when she arrived, just smaller than the size of the dwarf rabbit I had in my early twenties. We went out and purchased supplies for her, including two books on rabbit ownership. It took a few days for us to get to the breeds section of one book and we finally looked through the pictures and names until we found a match for the breed name the rabbit farmer had told our kind neighbor. The paragraph began, "One of the largest rabbit breeds, the xxx is...."

We soon found out the book wasn't kidding. Fluffy grew to be the size of a small cat. And, probably as another breed-related characteristic, she seemed to enjoy peeing on household items much more than my dwarf rabbit of many years ago, so she couldn't roam the house 24 hours a day.

As a solution, we worked out "Free Time for Fluffy." In the morning when I get up, I close off the kitchen with a makeshift gate, and let Fluffy out to romp around the bathroom and kitchen/dining area. Until John gets up, she stays out and has a chance to run, jump, and dig into the little area where I keep the paper bags and brooms (sometimes we also take her out in an exercise pen in the yard). She likes her free time, not only because she gets the amount of space she deserves, but also because she gets a special rabbit massage. When she first comes out of her cage, she snuggles up to where I am sitting on the floor and I give her head a simulated rabbit-grooming by petting it with a moistened finger all over, then massage her ears firmly, and last, use my hand to make long strokes starting at her jawline and going all the way down her back.

She loves it. As we got to know each other better over the past 8 months, she began to participate too, by licking my other hand all over as I gave her this daily social grooming. When I'm done, she stomps her foot loudly, jumps up, and begins biting me all over my legs and trying to climb on my knees with the mating intentions of any respectable rabbit. This leads to me getting up to a standing position as quickly as possible and trying to get my cup of tea fast while she often continues to nip my ankles, before I leave the room entirely.

Yesterday morning I wasn't here, and Fluffy didn't get her massage or free time. This morning, though, I went to her cage first thing. Opened the door, let her come out and sit against me, and began the grooming ritual. I noticed that Fluffy was a little more snuggly. She seemed relieved that I was back to groom her again and as she was licking my hand, she kept sticking her nose inside the large, open sleeve of my sweater to get even closer. As I went through the little rabbit-grooming motions with my thumb all over her fur, I almost grasped her disappointment, her deprivation, and her relief and now happiness. I felt fully satisfied, not with my rabbit-stewardship as a whole, but with my ability to touch her and be with her for those few minutes. Without going into the issues of animal captivity, solitary social animals, or pet ethics, it was possible to almost contain in me for a few seconds, both of us and our connection. Not like the feelings and experience of my other family members - what we mean to each other, what it means for us to be apart for even one day or together for any length of time. And I guessed, at first, that my compassion must be barely the size of one rabbit. More accurately, one rabbit and five minutes are the size of my ability to be with someone and know I have been present enough.

When I stopped grooming, Fluffy didn't stomp her foot and jump up. She stuck her snout deep into my sleeve and stayed still for a long time. Then she got up and went off on her own business of kitchen investigation. Whether or not any of my interpretation is correct, at least I know my arm is warm and good-smelling, Fluffy is soft and alive, and it's good to be back.

Monday, January 12, 2009

Who Did That?

Last night John tooted four times in succession.

"Oh! Who did that?"

"Dohn." There was a pause as he became thoughtful, then declared, "MEEE!"

I was so surprised and excited, I felt like I sprouted enormous yellow petals all over my body during the split-second in which my jaw dropped.

"John! You used a pronoun! Yay!"

"MEEE!" (Of course, I should know by now that when I get excited about something he's going to want to say it again.)

I practically sang, "Me! I tooted" and John compliantly copied, "Mee! I doo-dih!" over and over. Meanwhile, big sister was patiently waiting for the boring toot-talk to be over so that the lights could go out. It wasn't exactly that John used a pronoun, it was that he referred to himself with a pronoun and he did it spontaneously. Are you sensing how hard it is for me to restrain myself from typing "himself" and "spontaneously" in all caps?

I still can't believe it even as I write this.

Just last week, John's PT and I were listening to his new words and we agreed acceptingly that it would be a long time before he referred to himself as me or I. What caused this jump to happen? Acceptance? Coincidence? Coenzyme Q10? Barney?

As if I wasn't surprised enough, today we made a quick stop at the library to return books. I reached to transfer John from carseat to wheelchair and--? he wouldn't let me touch him. He insisted upon getting down himself, though slowly and with help, and crawling all the way into the library while Pooh Bear rode alone in the wheelchair. He repeated this going back to the car, back out at Grandma's, back in after Grandma's, and back out to speech therapy at Dell Children's Medical Center. After a strenuous speech session he allowed me to wheel him back to the car, but by the time we finished our 30 minute drive home, with the requisite animal cookies and ice water, he was ready to do it himself one last time and crawled over the pea gravel into the house. I showed him how to say "All by myself."

When John was first diagnosed, I knew it was possible that he could be a baby forever. Carrying him, speaking for him, feeding him, diapering and dressing him, and scheduling him has been an exhausting, four-year-long infancy. Last week I gave John a big boy haircut for the first time. Right now, he is watching the movie Cars with his seven-year-old sister and bugging her.

I think he might become a big boy.

Sunday, January 11, 2009

Molasses cookies

Something unexpected has happened to John. In November, he tried out a voice-output communication device for three weeks in a limited way and he started talking. Not with the device. With his mouth.

To reduce any unmet expectations, I had taken a break from thinking that he would ever be able to speak intelligibly. The break started sometime over a year ago when, after several attempted discussions with a speech therapist about exactly what his difficulties were and how we should approach them, including detailed information provided by me, said therapist concluded, "You know, I'm beginning to think this is more than a simple speech delay." I had other things to work on after the hair I tore out healed, and so I took the break, well except for two other speech therapists, but really it was a break, and when the year was up we focused solely on voice-output augmentative communication.

Before Christmas, he was sick with a cold. He wouldn't eat and I was worried about where that would take him. I now know that eating at 50% capacity for three weeks with five strenuous therapy sessions on the last week, can land him in the hospital and I know what the lab values looked like. (Well, hypothetically, since we don't really know that not eating caused the crash.) I wasn't sure what eating at 30% capacity for ten days but still drinking well, with resting protocol, would do. (Note: since this episode we got labs and came up with a new formula for just these occasions.) He had a sore throat and I was letting him eat ice cream and whatever else I could get in.

John was sitting in his highchair scribbling with markers, a super-favorite new pastime, and I had just made dough for my grandma Lucy's amazing molasses cookies, rolled the balls in sugar, and baked them, all in front of him. He showed no interest. I took the tray out of the oven and set it far away from him on the table while I went to get the spatula. That is, I wanted to get the spatula, but I was stopped by a sudden storm of protest from John. "Uhhhhnnnn! Uhhhhnnnn!" Maybe there was something wrong with his marker. I tried to step away again and got the same thing. Frustrated, I considered ignoring him but I stopped and paid attention. With little patience, I said, "John, what is it?"

"Cook-ee!" He actually wanted one of those brown things. Then I remembered that I had made them once, months before and he had loved them. These cookies are very soluble in your mouth, and that is John's favorite thing. Chewing for him ranges between challenging and impossible. The cookies are not pale colored and lightly vanilla flavored, though, like everything else he likes, and I can't explain that part.

He ate three that night, a caloric miracle. I was thinking about how adding some vitamin drops would probably make the cookies superior to the liquid nutritional supplements out there but as I started on the question of how you would increase the protein I had to stop and search for a tin to mail the cookies.

The next night he was sitting on the floor in the kitchen doorway. He ate one or two cookies. I gave him another. I was working in the kitchen again. He started breaking the cookie into bite-sized pieces. After a few minutes I looked and the cookie was in tiny pieces and he was intensely fingering and working the chunks with a combination of the enjoyments of ripping paper and squeezing Play-Doh.


He looked up.

"What are you doing?"


"Are you going to eat that cookie?"


"You're not going to eat it, are you? You're just goofing around!"


"Goo - ih a - RAO!"

"Did you just say goofing around?"

"Goo - ih a - RAO!" (cute smile)

"Hey everybody, John just said goofing around! Come here! Listen to him!"

He must have said goofing around ten more times that night, and twenty more times each day that week. Many of the times were with that cute, attention-loving smile. Two weeks later when his new speech therapist asked what he did for the holidays, he looked down with a new, shyer smile and diligently said, "Goo - ih a - rao!"

I get worried about him, of course. I was kind of thinking that his not eating would lead to us spending a day or two in the hospital just before Christmas and I made a half-neat pile of our clean clothes that could be scooped up easily later, in case we were at the doctor's office and they said that thing, "Well, I'd like to admit him," that I now know they just say sometimes.

I worry, and worry, and then he does something like this, and he just shines past it all. He is so . . . shiny.

About four days after the cookie-mushing incident, he started eating again. I know this may be normal for his system, and I have the comfort of having read stories from other families about many types of not eating, half much more severe than this. I don't know what John's comfort is when he doesn't feel good enough to eat, but I suspect that when he has the energy, that it is - goofing around.

Pump Failure in Drought, Boy and Pump

Pump Failure in Drought

When we turned on the faucet, here's what came out: nothing.

The pump worked, or it didn't work. First it stopped only in the afternoon; later, other times.

Just get a new pump.
For the first time, and only for a second
before in my mind something closed again, I understood the depth of "Let them eat cake."

I didn't know that I didn't know the pump. I knew water came when I called it. Flushing the toilet,
oh, I forgot. It won't flush just now. That's okay, I'll wash my hands then. Oh.

Even though the full washjug and empty cup I placed
are sitting on the sink by where I reach to the faucet, no, I don't see them, not every time.

Down the road, the deepest creek has been dry so long, its sides and bottom are fully covered with dead yellow pasture-grass,
and it looks like a prairie stretch mark. The water that does run when our pump runs for now
is bought from a truck, not given from the rain into the tanks.
Pumps are machines
and don't know our weather. It is only the pump that fails, right?

More and more it didn't rain, and not for the rain but for the dying pump, more and more we changed. First only
running outside to remind the pump to start and
back to the sink before pump forgot. In and out, in and out. When tired, when lazy, no water until stirred again to go.

Next scheduling the one chance to fill the wash and rinse sinks and the bath all at the same time.
Saving the dishes, playing instead of bathing.

Sometimes taken by surprise when it wouldn't pump at all, but never
completely without until the very last day.

In the end, the new pump prevailed. Water flowed again,
as through our empty creeks it will flow again someday.

Boy and Pump

Oh God, I forgot, when I wrote about the pump I forgot to tell you
how thankful I was that the pump died.
When it first went wrong and it went to the repair shop, they saw nothing wrong.
All the no-water in our world couldn't convince them, because it did, it did work for them.
The soon next time it went, they fixed something. "It's this"
they said, "Good" we said, and the pump worked and we forgot for one day
and on the second day it stopped again
Then they said, "No, it's that, but you can't buy that part."
The pump came home and we nursed it and it ran, when it could, for a long time, and we shaped around it.
The last time, many people had somethings to say, all different, but the last something that was said when it was opened was
"There's nothing you can do. You need a new pump."

Well you know my boy, I know for sure you know him and how well he is doing
I know you know all of this, but he has been in to the shop, and first
they saw nothing wrong, next they told me what was wrong,
and after a little longer, they said, well, there's more to it, but you can't buy that part, and listen,
because we don't even know if we can test that part.
You know what comes next.
We'd learned later one view that the pump has a three-year life span, it was used up, and it was okay to get a new pump.
God, I don't yet know each human life span, and somehow because
I don't know, I believe that you don't know. I know so little that I don't even know what will happen in entirety.

After they said you can't buy that part for little boys,
we took him home,
we nursed him, he ran when he could, and we tried to shape around him.
Time passed, and not yet a long time.
Do you know what he did? Do you remember two years ago when we tried so hard to get him to stand,
and thought the piano was the easiest place, and tried and tried for eighteen months and gave up for certain?
Tonight when we were barely watching, he stood up at the piano four times.
It's not the pump and there's not nothing we can do.
Other pains and other stories will come. We are living now, and he is living now.
You couldn't ask for a better little boy.

Poem about the kids sleeping

North Window

The north wind and the county-funded north window are meeting tonight.

The cold comes through the place where the frame is no longer square.
A folded blanket half stops the cold.

Lower, on the floor, the eldest is safe between a nook of wall and a nest
of goose down underblanket.
The youngest turns over, into the turtle of babyhood, his crown now pushed warm against his pillow. I wake and cover him again.

Beneath the window myself, I need my hat as sleepers have for centuries.
If I can stretch my legs warm down the bed, I rest, and there is nothing to say about the night tomorrow.

Care was taken to place this house, and build its walls,
but the wind has its own cares.
The safety in this house is real. Where the wind and the window meet, I would not sleep out there.

Saturday, January 10, 2009

Summing it up

We went to the park today, to the playgroup that we've attended for seven and a half years, and I was reminded that I haven't been keeping people informed about John. I mean, I already knew as 2008 ended that since June, I hadn't updated his website or written much by email to the many people who made it possible for him to attend the last leg of his out-of-state therapy program. I already knew that I'm really, really no good at verbally describing a situation. And I already knew that I was hanging out with people who I see infrequently and even less frequently get to talk to, because that's how it is at the park. You're there to catch up with people and let the kids play. But somehow I was totally unprepared to present our current situation.

Everyone was chatting about their lives, present or future, and I mentioned that John made a big achievement this week by going to childcare for four hours and not getting sick. Now, this wasn't actually true, because he did refuse to eat that night, even yogurt, and that is one of the first warning signs for him and it means that I will have to repeat the experiment two more times and decide if he doesn't get sick, from the data of the three trials. So maybe my white lie was the first problem. I often get into trouble when I try to simplify a story. So, since being excited about going to childcare for four hours and not getting sick is kind of different, I then had to explain where we are at in the intersecting planes of symptoms and diagnoses. In one or two sentences.

It wasn't the audience; they followed along just fine to that point. It was the challenge of summing it up. I can't sum it up, and I don't know if I want to sum it up. I would very often like to have it summed up for me, and that is why I keep taking John to specialist appointments where we leave with more or less mutual respect and mutual unanswered questions. If someone summed it up for me then I could say, "Oh, John has a novel genetic mutation which causes a complex of multisystem symptoms and they're going to call it JQ syndrome. The prognosis is la la la."

Meantime, we all have our different ways of summing it up. John's doctors can do it by listing the existing diagnoses, plus the yet undiagnosed features. Or they can just hold his chart in their hand. I sometimes make attempts at summing it up, like the "John's 2008" email with a sentence for each month of last year. Some other ways I've tried are:

"Well, we thought we had a diagnosis for John of septo-optic dysplasia but there were other conditions that weren't supposed to go together with that, and then he got sick in July and we got really confused." No, that one disintegrates at the end.

"He has septo-optic dysplasia; a sort of mild atypical cerebral palsy; congenital fibrosis of the extraocular muscles, not genetically confirmed but under study, with features of unilateral Marcus Gunn jaw wink ptosis, weakness of the eye closing muscles which as you know is not part of any of the diagnoses I previously mentioned; weakness of parts of the mouth preventing chewing and much speech; periods of extreme weakness and lethargy which are partly controlled by a strict resting protocol; and unexplained GI symptoms such as alternating constipation and diarrhea, undigested food, reflux, and periodic refusal to eat. The additional symptoms led to suspicion of a possible mitochondrial disorder." That one makes me feel like a geek and it is way too long for most people's attention span. But, it's accurate.

Those are attempts at summing it up, and I have to do it, and I will keep having to do it. Eventually I will learn to communicate verbally, or not. But what I really wish I could do is offer something much deeper and more descriptive: the defining moments. They are very long moments where time stops and many things are all there at the same time, and though they require the medical details for background, they say so much more than that descriptive, accurate paragraph.

They are the pictures in my mind when I think about who John is and where I have been with him as his mother. They are the rich, small catch in my throat when I remember a special moment of sadness or happiness shared with others and John.

They are things like: the moment at 5:30 PM one day in the hospital when I finally got to lie down and rest after a day that included a poorly-administered fast, a shocking screaming physically restrained force-feeding imaging test, a surprise EEG, and an alarming physical wilting by John that no doctors were there to witness...I knew I might throw up if I didn't rest, so as soon as I was sure John was actually breathing and only sleeping, I laid down on the hide-a-bed chair and pulled the hospital blanket over my head and went to sleep. No one came in for almost 60 minutes. I learned the next day that a doctor had come by and kindly sensed through the window that speaking to us wasn't an option.

Or the moment when John was 18 months old and Bonnie was working hard in an un-air-conditioned boathouse classroom teaching him to crawl, and after many days of working like that, bent over him helping his limbs' timing as we kept the motivation of rolling balls or other toys going, she stopped, and expelled, "He went contralateral on both sides," wiping a section of hair off her sweaty face and sitting to catch her breath. That meant that for a second, he had finally crawled.

If I could share those things, now that would be keeping people informed.

I have to say the first type of thing, but I wish to say the second, and that is what I hope to do here.