The long, familiar, steeply curved road (down the mountain)

In the summer of 2001, I attended the Bread Loaf Writers' Conference, the first time I'd taken time away from Robert, in fact, the first time I'd been away at all. At the conference, I spent more time talking about Robert and his puzzling illness than I did talking about poetry. While everything I said about Robert and about our situation was true, by the time I left, taking the long, familiar, steeply curved road down the mountain and back toward the town of Middlebury, where I attended college, I had the uneasy sense that I'd somehow made Robert up.

On the one hand, the facts of my life sat as they sat, and I had conveyed them, yet picking up these pieces and arranging them into a variety of narratives, which answered a variety of concerns and questions posed by others, was a new experience. Unlike doctors and assorted therapists, played mostly by versions of Jack Friday asking for 'just the facts, ma'am,' non-medical civilians wanted to hear what I thought, what I felt, and how I saw Robert, an activity on my part that engages in a subject-object relationship that may not be strictly reliable as an arbiter of fact.

Robert can't speak, still can't speak, and his limited physical abilities have made assistive technology or augmentative communication extremely difficult. What I've written about this has been published as an essay at The Collagist, read it if you like--repeating that backstory is not my aim today.

What I mean to say is that--and the construction "what I mean to say" itself being a noun clause, a verb structure masquerading as another part of speech, a noun, an abstract expression substituting for something unknown or indescribable--what I mean to say is that I have an extremely limited sense for his subjectivity. I knew then that he didn't like doctors (duh), had a crush on Tigger, loved me, liked certain toys more than others, and so on. I understood how he made some differential choices in the world. But I didn't know what he thought, although context and facial expression and where he glanced about the room might enable me to construct his thinking.

The child I constructed at Bread Loaf was as I knew him: bright, engaged, severely disabled, attentive to nuance, alert to the world. I wrote my version of Robert and I believe it to be true to this day. But I knew already that other people looked at Robert and saw little of that: severely disabled, disengaged, distracted, unintelligent. Which stories am I responsible for telling? My own, Robert's, or an amalgam of the perspectives of other people? If other people, whether they're medical professionals or family members, express doubt about Robert's abilities, in what ways am I expected to incorporate those into my own story? Does it depend on the audience?

Complicating matters, the poet Ellen Bryant Voigt delivered a lecture about poetry in which was embedded what I'd come to know (through Robert's speech, occupation, and physical therapies) as a typical narrative of human development: I wrote in the Collagist essay about "her assertion that the ability to speak, to process the world into language, is the primary turning point for a child, what makes a child fully human at last." Ellen, of course, would later admit me to the Warren Wilson MFA Program for Writers and I would come to love her dearly in that capacity, but I never asked her about her lecture.

I'd pushed back against that narrative for  three years, though, backed in part by one of our neurologists, who read Robert's case differently and supported me in my refusal to participate in full-scale developmental testing, a resistance that upset some of my close relatives. We had to know what to do with Robert, was what they argued. The neurologist would not take an absolute position on Robert's intelligence, except to point out that he had bright eyes (yes, that really is something neurologists look for), but made the rational argument that without an appropriate communication method or device, the test results would be skewed, most likely irrelevant and almost certainly harmful.

Regardless, one must drive the long (now familiar) steeply curved road down the mountain, using the brakes to avoid this or that certain catastrophe, knowing full well the road will end in a different location each time one drives it. When I reached my parents' lake house (in Vermont we say "camp," but I'll use a more familiar term), where my family stayed while I was at Bread Loaf, I'd been away for 11 days. Edith was 17 months old, and when she came flying around the outside of the house, chasing her cousins, I remember her pausing in mid-stride to look at me the way an adult at a cocktail party looks at someone he knows he should remember, but doesn't.

Robert and Roger were inside, where the light was dimmer. As I pushed open the screen door, I could hear Robert's soft vocalizations, which were not words, but by or through which he intended to share something with us. Robert recognized me. The look of recognition is universal, is it not? When I saw his face, which on that particular day was less responsive than on others, I felt the slippage between the Robert I'd narrated at the conference and the possibilities of the Robert before me at this instant in time. I'd become dishabituated to his presence. But how is the narrative with Robert expressed--the reflection of his face, his gestures toward communication, a reading of his body against popular stereotypes of children with physical disabilities, where? Where might it be located?

Roger helped him stand and step toward me, Roger's two hands under Robert's shoulders, and I knelt on the floor and held him close to me, my right hand pressing his face against my shoulder. And Robert said, "Mmmmm," which is a difficult sound to make, one he'd never made. He said it twice. And has never made that sound again.

To answer your question or assumption, yes, I do believe he was trying to say "mom." But I know that many of you will not believe me. Or you may suspend your disbelief because you know I care about my son and you're willing to grant my wish and my belief a credibility stronger than it might otherwise deserve.

No matter. The medical world has borne us out in our beliefs--as Dr. Hamosh described to us in January, research on basal ganglia damage shows that many persons with "liquified" basal ganglias have perfectly strong intelligences. This breaks the link society often makes in assuming that persons with severe physical disabilities, persons who are non-verbal, do not possess significant intelligence. It supersedes the developmental narrative I've been resistant to all along.

The point of bringing this up today is the experience of this previous Tuesday, which is another drive down a steeply curved mountain, a road I've been on before.

We've been exploring the possibilities of eye gaze communication systems again: the use of a camera and computer that allows a user to operate software with his or her eyes, generating speech. The last time we did this was in 2005, I think. The technology was relatively new and had its limitations, depending on the limitations of the user. To make a long story short,  Robert showed promise with this technology, but, in the end, after a couple of years of trying to make it work, the limitations imposed by his still unknown illness prevented Robert from success: he could not sit long, even in his wheelchair, at the 90-90-90 position required for the camera to properly track his eyes (his neck could not be strengthened); he had a tendency to look away from the screen (which meant the camera had to be calibrated to his gaze again); calibration itself required up to 10 points in order for Robert to hit very small targets with his eyes (what might be required for him to look at a screen with 40 or more icons on it, or type on a virtual keyboard); and so on. We thought he could overcome some of this--he couldn't.

We had spent weeks arguing with the insurance company about this $17,000 device. It took hours and hours of our time, the involvement of the human resources department of Roger's payroll company (how he got our insurance), and the intervention of any number of other individuals. In the end, the payroll company wanted to keep my husband's business and exerted leverage on the insurance company to deliver this as we'd been in-process transferring to that insurer (through the payroll company) when the matter came up and they'd indicated they'd "probably" pay for it if we signed up with them. Insurers rarely pay for communication devices, and this was a stunt I could not pull off again, a maneuver accomplished under particular and exacting circumstances. A relative provided part or all of the money for the co-pay, which was about $2,000, plus an additional $600 for equipment the school system insisted we buy so that Robert could take the main parts of the device back and forth more easily. The school system promptly reneged on everything it had promised us, insisting that we had to train Robert to use the device before they'd ever consider its use in the schools--a position they dropped after we sought help from one of our state legislators, who delivered a letter on our behalf to the school board. At that point, months later, the school system said they'd discovered another vendor that made a less expensive device, which was something they might have told us earlier.

I told you the road down the mountain was twisty and perilous.

Five or six years later, in the fall of 2011, I was told by a therapist at HSC Pediatrics, the technology is much better. Where we'd been dealing with a multi-component system that had to be attached to a rolling bed tray, systems are integrated. In addition, the eye tracking software and hardware is much advanced. For example, Robert's wheelchair can be tilted back, only a 5 point calibration is required, and Robert can disengage with the screen and return, his calibration preserved.

I was still skeptical. The last go-round had been hard enough and there were bad feelings on many fronts when this "investment" in Robert did not work out. It might be said that Robert is not an investment or a business, and that X dollars in does not and cannot equal or guarantee X outcome or product. Robert's only outputs are the stability of his health and the quality of his life. I consider being able to communicate the most important piece of his quality of life, but I am aware of people who disagree with me.

But where did this all stand this past Tuesday? Tuesday was session six of an eight-session evaluation of Robert's ability to benefit from an eye gaze communication system. Two manufacturers, PRC and Tobii, loan devices to the clinic. On each, Robert showed promise, but the various parameters of the system software, the eye tracking hardware, the picture symbol libraries, all had downsides for him. I could see Robert using each device, but I knew from hard experience that his progress would be on an uphill road.

Then the Dynavox rep came with her device. On Tuesday. Within minutes, Robert was making selections--pushing virtual buttons with the strength of his gaze--answering basic questions about basic choices on the screen. Then we just let him play with a series of screens, all of which had phrase and sentence building symbols on them. He was paging back and forth, putting phrases together: "mom," "dad," "mine," for example, "go to" "MacDonald's" was another. Yes, we were his mom and dad and we were both there. We promised him we'd take him to MacDonald's. The product placement was a tad scary. But. He put these phrases together more than once, and there were others I forget, so wrapped up was I in watching him activate this newly miraculous machine, just with his gaze. The ease of it. His excitement. The possibilities. He had about 35 minutes with it, then the rep had to leave.

On the PRC, he'd told us that he wanted to play checkers. We've never played checkers before, but Edith has recently built a chess set made of Legos. The boards look the same, and that picture was the icon for the screen "checkers." I know what he was trying to say, even though that software set up did not allow it.

And here we are, brought back around to the issue of narrative again. At what point does Robert get to tell his own story? I'm not the gatekeeper of his story--I'm merely the conduit. The gatekeepers are all of you out there. Because this device costs, depending on the package, $12,000 to $15,000. At the present moment, I'm not in the position to write a check, although I'm already working the resources I can find. I am nothing, if not industrious. The school system might pay for this, but as you can see from the above, that's a long and treacherous path.

People who can't speak for themselves rely on the open-mindedness and the tax base and the public welfare agreements between society and the individual. Upon whether all of you out there think Robert is "worth it." IF I had a Medicaid waiver, Maryland Medicaid would pay for this. In three years, Medicare will probably pay for this, but by that time, Robert will have only 3 years left in the public school system, which would provide him with the best supports for learning to use this (he can stay in high school until he is 21). He has about 6 ahead of him at the present moment, if we had the device for next fall.

But I do not have a Medicaid waiver--because I have a job and my husband has a job and we have medical insurance. Robert does not require hospice, his health is currently stable, and he does not require 24-hour nursing care. He is not on a ventilator. Maryland does not take into consideration the overall severity of Robert's disabilities. Maryland's Medicaid waiver program serves a total of 200 children state-wide. Robert is in category 6, which is the lowest priority, and is currently #24 on the wait list for category 6. The last time a child was taken from category 6 was last fall. More than likely, he will qualify for Medicare before a Medicaid waiver is available. Medicaid is one of the few sources of funding for this device.

I have friends who might tell me that my level of personal responsibility with regard to my child (the job, the health insurance) qualifies me, in their eyes, more highly for Medicaid waiver-ship than others they might imagine out there (although I can imagine many more persons who deserve Medicaid more than I do). I have friends who have told me I should "go broke" to qualify for Medicaid, as though that would really solve anything. Oh, the extremes of the American electorate.

What's the story of your child's first word? First sentence? I'd love to tell mine someday.

Busily Seeking on Facebook and Twitter

Dear Readers, I've established a page for Busily Seeking … Continual Change on Facebook as a means of sharing disability links and information I come across on a daily and weekly basis. For those of you with disabled kids yourselves, this is an opportunity to catch links you might not ordinarily have come across, but also to share links of your own. I plan to post broadly about childhood disability and its many forms and conditions, as I'd like to be as inclusive as possible.

Because of the way I manage this blog and orient it for a broad range of readers, I don't have the time or capability to do posts aggregating links. But Facebook's interface gives me a chance to do this without the work that would go into a post. Most of these links will also post to my Twitter account.

Please feel free to follow or "like" Busily Seeking on Facebook (http://www.facebook.com/pages/Busily-Seeking-Continual-Change/289042871149433) or follow me on Twitter @jeneva22.

There will be additional posts on my Twitter account as I can retweet from there. Retweets from Twitter will not post to Facebook (that's the way it's set up). I hope either of these interfaces will be of use to some of you. If you follow me on Twitter, I will return the favor--and if you want me to "like" a particular Facebook page, please let me know and I'll do so.

ACGT, or genomes & language & coding & clues

When I was a child, my dad worked for IBM in Essex Junction, Vermont. Of the several routes to the plant, which covered (and still does) acres and acres of land, my favorite ran alongside the bending path of the Winooski River until a left-hand turn by the large black sign brought us in, past a playground that might have been for IBM families (or not) and into the seemingly identical series of smaller streets among the beige brick and steel buildings. IBM was a gated city within a small Vermont town that had a single major intersection to its name.

The playground feels important because that was the fun part of IBM Family Day. Once a year, the company allowed us past security into the linoleum-tiled hallways to see the computer through a bank of windows designed for that purpose. THE computer, as there was only one and it occupied the perimeter of an enormous room that no one could enter unless they wore certain shoes and maybe hairnets. Most of what I saw at home was residue from the computer as Dad brought back some of the vanilla-colored punch cards that either drove its operation or were the output of its operation and we kept them by the phone to take messages upon. The cards had patterns made of small rectangular holes, clustered in various areas like a non-infectious disease.

The computer looked much as one might expect having watched many episodes of Star Trek: flashing lights and dials and pieces that looked like the wheels of giant tape recorders or film projectors spinning black shiny material clockwise and counter-clockwise. People who looked either vaguely scientific or somewhat business-like monitored what the computer did, which was buzz and spin and light up and spit out punch cards. Also reams of special paper connected continuously at the seams with perforated lines and perforated edges that attached marginal strips with evenly spaced holes to guide the wheels that turned the paper through the computer and its associated machines.

None of us really cared that much about seeing the computer, mainly because they wouldn't let us into the room and push the buttons ourselves, but we made an effort to be impressed because my dad found it so exciting to show it to us.

The laptop I'm typing these words upon probably has more functionality than that room full of metal and tape and paper and blinking lights. And the smart phone I hold in my hand has a significant fraction of the power of this laptop. The future comes toward us in ever smaller packages, the workings of the machines hidden from us by layers of software and shiny protective cases.

In mid-January, we made the drive to Baltimore to see Dr. Hamosh, the Hopkins geneticist who will guide us through the process of genome sequencing for Robert. So we made the familiar vehicular descent into the city on I-95 via that series of Jetsons-style elevated ramps above the marshlands of Baltimore Harbor, swooping past the clustered skyscrapers and into the heart of the medical campus, finding the right turns to the proper garage. The pediatric genetics clinic was accessed through the garage, through a series of doors equipped with big silver buttons for the handicapped, doors that felt like a series of airlocks into a space shuttle, when, actually, we found ourselves in a spacious waiting room the chief aspect of which was lack of windows.

We were in a basement, which seemed quite apt as, at this point, we don't know where the hell we are with diagnosis to begin with. Return to start, do not pass Go, do not collect $200.

Dr Hamosh is a brilliant researcher, scientist, doctor, whom I genuinely wished my daughter could meet, but Edith insisted that she had a mid-term exam and looked at me cross-wise when I tried to explain to her that I had infinite powers with the school to excuse her from such clap-trap so she could have a tutorial in genetics research and applications. In short, Edith did not believe me, although I believe my powers to be actual, probable superpowers of parental insistence and persuasion.

While I have long resided in the land of disability and neuro-genetics, a land governed by the simple tenet that little is really known and cause and effect are, ultimately, suspect, I admit to having certain simplistic understandings of what a genome is and what sequencing a genome involves.

Genes march two-by-two in chromosomal pairs like a biochemical Noah's Ark, right? Mendelian genetic theory, the monk and his pea flowers, in which floral characteristics obey some assuredly Darwinian logic in which dominant genes overpower the effects of recessive genes. Yes, sure, but also, not quite entirely.

All of the above, Mendel's tiny Xs (and in males, one lone Y) and their possible whole duplications and deletions are what can be seen under a high-powered microscope. We can now also perform DNA analysis with microarray, which allows us to see regions on each chromosome that might be variants, defects, duplications and deletions. Robert has had both of these analyses and he has no wholesale replication or absence of his various Xs, and no obvious defective regions (or add-ons) in the microarray analysis. One of my cousin's children was successfully diagnosed using basic DNA analysis, and another cousin's child was diagnosed using microarray.

Which, for Robert, leaves genome sequencing, an analysis of the four biochemical building blocks of each gene along each chromosome: adenine, cytosine, guanine, thymine, or ACGT. The patterns in which these letters are found can be interpreted to detect defects, deletions, additions, reversals, substitutions, repetitions, any of which scenarios may cause a shift, small or large, in the signals that initiate, maintain, or regulate biochemical processes. And, in turn, these biochemical processes as they build one upon the other, allow me to move my muscles, think, and type on this computer, among other tasks.

Genetic defects can be inherited, as in the Mendelian theory we all learned in high school biology, in which chromosomal replication creates gross (or subtle) problems during the earliest stages of reproduction and cell division. A fetus receives two, say, chromosomes 19, one from each parent, but each contains a recessive gene for a certain disorder not present in either parent as each parent's health is protected by a "good" X chromosome that corrects and takes over the directions issued by the faulty member of the pair. Chromosomes have co-dependent relationships, covering for each partner's failings.

Genetic defects can also occur spontaneously during the course of gamete replication in either the male or the female, or they can occur spontaneously during initial recombination as the gametes merge and reproduce. Some researchers even think that defects can occur over time in certain genes and the function of certain organelles as the messenger RNA makes errors transcribing from nDNA or mtDNA code. Remember, the mitochondria, which produce all of an organism's energy, have their own strand of DNA.

Time for an analogy. The best one I have is with computers. Gross chromosomal defects are like missing an essential program for your computer--or having duplicates running at once interfering with each other's signals and commands. All of a sudden, when you want to convert that Word document to PDF, Adobe Acrobat fails to comply. An error message results. No more PDFs for you.

Defects that can be determined through microarray analysis are like examining the command prompts that compose a computer's underlying operating system--DOS (disk operating system) ran (or still runs) PCs, and iOS runs Macs. On a PC, you can usually locate the program that reveals the DOS window and glance at the command prompts, issued in a string down the screen, that are causing the machine to function or malfunction. One of these coding languages was called ASCII, but I believe other languages are in use now.

Underneath the operating system is the actual computer code. All computer code is ultimately composed of the numerals 0 and 1, arranged in infinitely complex patterns, all of which make perfect sense to the computer, unless, somewhere, an incorrect string of them is embedded, or a programmer skipped a 1 somewhere or accidentally inserted an extra 0--for example. I'm sure I have some details wrong, but bear with me, analogies may contain imperfections, or they wouldn't be analogies, they would be some sort of higher level truth.

The future is handed to us in smaller and smaller packages. Some people say that good things come in small packages.

I say all of the above, all of it, to prepare you for what comes next.

Robert's blood was drawn without complaint from him by a phlebotomist, her office swelling with the strains of gospel music emanating from a small radio, racks of glass vials with color-coded rubber stoppers on shelves. Robert's caps were purple, as we those of mine and Roger. Our blood is being sent to Baylor University this week, where Dr. Hyland's lab (the neurotransmitter expert whose tests blew up the little shack constructed of diagnostic hypothesis we'd inhabited for many years) will perform whole exome sequencing on Robert's genome.

Each chromosome is composed of exons and introns, exons being the known coding area of the gene, and introns still tenuously referred to as non-coding regions of the gene. There are also transitional areas between exons and introns, as well as regulatory zones on each end of the chromosome.

Here is where I remembered Mrs. Lewis, as we settled into our seats for AP Chemistry in high school, telling us that everything we'd learned about electrons and molecules in regular Chemistry was taught to us deliberately wrong. We told you half-truths so you might understand.

Or, we might say, each set of scientific theories is like tract homes rising from a plain of newly cleared land, only to meet the fate of rapidly constructed living space--leaky roofs, badly sealed windows. Sometimes the contractors go back and try to repair their mistakes, sometimes they move on to the next project.

You see, introns are now suspected of containing genetic directives, as is the transitional area. Once, geneticists called introns "junk" DNA. I have a chromosomal variant on one of my chromosomes 20--a little "arm" that projects from a non-coding region, discovered when amniocentesis revealed that Edith had it. I was told that no one thinks this odd little piece of material does anything, or at least causes any disease, maybe, probably. I am the canary in the coal mine who continues to function much as a typical human being does. But who really knows what that mysterious arm does?

Regardless, we will not sequence Robert's introns. Why? Exome analysis will yield thousands of variants in the ACGT sequences in anyone. A computer will rapidly compile the hundreds of thousands of protein "letters" in Robert's exons and then do a sort of some kind by variety of error/defect. Then actual people need to sit down and pore over this data, not simply read it, but interpret it. Like the 0 and 1 sequencing of computer code, ACGT is a language, and all languages may appear at first to tell us absolute and blunt things, but any writer knows what substituting a verb can do to the meaning of a sentence, and any copy editor lingering over the best arrangement of clauses and phrases, the placement of commas (which are like punctuational variants), any copy editor knows just how imprecise and how variable language can be.

Yes, it all seems simple. Newspapers tell us that researchers have sequenced the human genome. At last! A template to which to compare Robert. But first, his little coding blips need to be compared to the letters in the same place on my genome and Roger's genome--if we have these blips, how do we interpret whether or not this variant causes or will cause disease?

And, I hate to tell you, but human beings are works in progress. Just because we think we know what the human genome is now means nothing. In 200 years, as DNA and RNA and gametes and the human sex drive do their day-to-day jobs, the genome will evolve to look somewhat different than it does now. That's right: any variation my family line encodes may simply be the next itty-bitty step in natural selection. And natural selection steps both forward and back--nature a vast experimenter, much like a three-year-old deciding it would be fun to dump nail polish into dish soap and see what happens. (If, in fact, as the genetic counselor cautiously probed my limits and biases, you do believe in evolution--cue the gospel music?)

Let me return you to Robert's neurotransmitter metabolites testing. In 2004, the first data we ever had on Robert's condition showed abnormalities!! At last, if not a diagnosis, a framework in which to place his movement disorder. In 2011, this test was returned to us saying that, in fact, everything looked normal. At our appointments with Drs. Gropman and Hamosh, we learned that, in fact, the two tests came back with exactly the SAME data, but now, seven years later, Dr Hyland knows that these results are common in children with neurological problems. No big deal.

And this is, really and finally, why we will not sequence Robert's introns. Researchers do not thoroughly understand intron coding, nor by what mechanisms intron genes are called into action, nor what those embedded ACGT sequences really mean. I could ask them to do it--it would cost more--but it might be a wasted effort. Whatever data we collected, whatever catalogue of defects we thought we had compiled might, in the end, be skewed as researchers, like developers in the heyday of the real estate and mortgage markets speculated only to be proven wrong in the end. And we'd have to do it over again.

I thought about all of this complexity this morning as I confronted my fears about what I was beginning to assume was a major plumbing problem behind the (gulp) drywall of our family room. I heard a dripping, a loud dripping, so loud it sounded like popping, just after the shower began running, just after water ran in the sink, just after the tub drained. It didn't happen just when the water ran, it didn't happen at all when no one was drawing water--water had to be draining, which eliminated water intake valves and pipes, and pointed to the PVC drain pipes, the main drain stack. But, maddeningly, I could find no evidence of water leaking anywhere: no damp spots, no swelling between the boards of the hardwood floors.

I envisioned Tom, our plumber, cutting open the drywall and imagined the expense not just of the plumbing repair, but the plastering, the painting, the reconstruction.

I called Tom, who is, frankly, a plumbing genius. He said, it could just be expansion and contraction of the pipes as hot water runs through and drains. Fill the sink with cold water, he said, and the tub. Then let it drain. Call me back if you still hear that dripping.

I didn't have to call him back.

Shit--how one thing can seem like another, how we'll talk ourselves into anything. How confusing clinical diagnosis is without data and knowledge applied. How I was sure Robert had mitochondrial disease because the description matched so closely what my observations had been all these years. How convinced many experts were as well. How I tried to talk myself into having early signs of multiple sclerosis while Dr Gropman enumerated them for me as adult onset MS happens often with parents of children with Leigh's syndrome. How the medical data is edging away from that mitochondrial diagnosis, bit by bit. How a couple of weeks ago, as Dr Gropman told us about tyrosine hydroxylase deficiency, a defect just available in the last six months as a genetic test. How I looked it up on the web and, open-mouthed, thought, that's exactly it!

My comfort here is knowing that six or seven or thirteen years ago, when doctors described a new theory, even I could see the pieces that didn't fit. As my observations and the clinical diagnostic parameters of new syndromes are fitting more and more closely, I know we are getting somewhere.

In about 90 days, we'll get our first report on Robert's sequencing: a list of anything that is known or highly suspected of causing disease. About four weeks after that, we'll receive a catalogue of all other defects that appear to actually disrupt function within a gene. That we can save with Robert's medical records to keep tabs on new research. Someone, someday, will decide to investigate many of those. And we can be connected with them. Maybe we'll get the real McCoy--a hard and fast diagnosis. Maybe we'll get more clues. We'll rule out TH deficiency, or will settle on it. And all of it will point more and more to possible affected areas of the genome and our understanding of what IT is will come closer and closer to knowledge and clarity.

And we'll continue to be prepared as the future comes to us bearing gifts wrapped in smaller and smaller packages--maybe tied with ribbon this time.

I feel comfortable in Baltimore now because I can find my way out through its nexus of one-way streets. After the appointment in genetics, we drove to Fells Point to have a very late lunch. Fells Point and its cobblestones--"how everything is waiting to be found," I though idly and nonsensically while I stared out the restaurant window at the 18th and 19th century buildings still standing in the shadows of 21st century construction a mile or two away. How the structure of a city still waits in place for us at the bottom of a hill, near the harbor, which smells like the not-so-distant sea.

Shine on 'til tomorrow

The number one song the week I was born was the Beatles' "She Loves You." Over the course of 1964, the Beatles held the number one spot for a total of 18 weeks, a little more than one-third of the year. Wikipedia points out that on April 4, 1964, the Beatles had the top five songs in the U.S.

The band's music was first aired in the U.S. at the end of 1963 when many stores didn't stock their music--when purchasing a record meant a trip to a store that sold them. A record, not a CD. The black vinyl that, in the years to come, you could try to spin backwards to hear the secret messages in "I am the Walrus."

The more I think about it, 1964 seems distant rather than yesterday. Even during my high school teaching stint in the late 1990s, my students didn't understand the phrase, "like a broken record."

I find it tempting to say 1964 was the year that "everything" changed, but I suppose one could make an equal case for 1963 or 1966 or 1968 or even any year outside the 1960s. On the Billboard charts, the Beatles share that year with the Supremes and the Animals, but also with Bobby Vinton and Dean Martin. Bobby and Dean were the music my parents listened to--they also owned many Herb Albert & the Tijuana Brass albums, including the one with the woman dressed only in whipped cream. My Uncle Glen--more than a decade younger than my father, listened to the Beatles. The age difference between Glen and myself isn't much more than a decade either. Even today, Glen gets a rhapsodic look in his eye if you mention the Beatles.

A video of "She Loves You," shows the Beatles playing a large venue somewhere in England in 1963: the stage comically bare--mics and a curtain divided into various beige and green tones. Ringo and his drums sit atop a stack of what appear to be amplifier cases, but maybe it's an elevated platform.

Frankly, on that bare stage in 1963, singing "yeah yeah yeah" (if you can sing that, you can sing the chorus to any early Beatles song)--on that bare stage, they look a little dopey. But young and dopey. And still kind of cool in a very minimalist kind of way. No fireworks, no big lights, no back-up singers and no significant dance moves of any kind. Girls scream and cry. The song still lights up some primitive center of my brain, its emotional core, reminding me what "young" feels like, even though Paul turns 70 this year. Even though I'm 7 years older than John when he died.

What catches my eye in the video are the looks on their faces, as if all this being on stage and girls screaming has been sudden in a way they can't yet fathom--when it's all fun, before the tedious parts of fame. Mostly, they're four happy guys on a stage projecting a confidence they could definitely get laid tonight.

Girls are screaming because "seeing" the Beatles live differs from "seeing" a live performance today. The internet would not have been explicable to persons living in 1964--even color televisions were rare (color broadcasting was not yet universal), and television itself close, but not yet ubiquitous. And the reception--remember rotating the rabbit ears while the black and white picture fuzzed crackled and blurred? Wait, wait, don't move your hand--I can see them!

My own family didn't possess a color television until maybe 1970, and my kids are entertained when I tell them about watching the test pattern on Saturday mornings, waiting for the broadcast day and cartoons to start.

1964: the year of the Civil Rights Act and the Higher Education Act. The beginning of troop escalation in Vietnam. For good or for ill, 1964 marks some bright line in U.S. history, one of those years people felt on the brink of something, something big.

Of course, I don't actually remember any of this. I'm an infant, right? While the Beatles had broken up by 1970, many of my friends and I were still fans of their music during high school in the late 70s and early 80s. I owned the White Album, and their red and blue greatest hits albums. Admittedly, some of us postured as bohemian throw-backs, "Let It Be," vying as an object of our teen melancholic angst with James Taylor and Simon & Garfunkle. Pink Floyd, the Police, and Dire Straits may have been IT for some of my classmates, but not for us.

Which is the singular point of Woody Allen's recent "Midnight in Paris": we're all nostalgic for a time not our own. And we remember things like the Beatles and not monks setting themselves on fire in the streets of Saigon.

The number one song in 1997, when Robert was born, was Hanson's "MMMBop," a song I don't even remember. One of the Hanson brothers was 12 when the song hit the charts, which puts a different spin on "young."

Roger and I didn't feel on the brink of something in 1997. Video and photos of us show tired new parents, Roger with outrageously big glasses, looking even then as though he'd just stepped out of 1968.

I've been writing about the early days of Robert's sudden onset illness (1998), remembering details such as our landline phone on an outrageously long cord, typically a tangled mess, but one that allowed us, theoretically, to drag it almost anywhere in our 1100 square foot bungalow. I think I had an email account with AOL, but hardly anyone to email with. Computerized medical billing was relatively new and every department had its own stovepipe system, complications of which would be driving me mad by 1999. Electronic medical records were a gleam in someone's eye, and the xeroxes of Robert's medical chart from that time show two black circles where the paper was punched to fit over the twin metal prongs of the physical card stock chart.

And, as I've noted before, mitochondrial disease was thought to be a collection of illnesses related to a handful of genes--and Robert tested negative for all of them, even though his presentation fit those illnesses to a T. Now there are 27 known defects for Leigh's syndrome alone and Robert still tests negative for all of those, even though, 13 years later, a description of his ataxic breakdown matched countless other descriptions of Leigh's onset, as a top mito specialist told us in 2010.

My memories of June and July 1997 largely consist of sitting on a futon couch in the back bedroom of our house, its windows facing north and east. The light in the room where Robert first slept was very white and clear and clean and the room was painted white with a blue ceiling border with black and white cows and a green and white rug on the floor.

Roger and I entertained ourselves for most of a morning by lightly moving a sleeping Robert's lower lip to mimic movie lines--"it was Barzini all along" was our favorite, the 'L's drawn out long for comic effect, Robert conked out from nursing and the two of us knocked silly from sleep deprivation.

And she loves you, and you know you should be glad--

I don't remember what music I listened to during those years. It wasn't the Beatles. Suffice to say, my 1997 was like 1964. We were on the edge of something.

Maybe it's been said before, but the Beatles loom larger in a collective musical imagination than do the Rolling Stones because the Stones came to us fallen--from 1964 to 1970, many Americans lived the trip from "I Saw Her Standing There" to "Revolution 9" along with "the lads from Liverpool." From the early, tight, repetitive lyrics with their chromatic chord progressions to the diffuse, coarser sound with the strange lyrics and the harsh tangle of guitars.

From days when everything seemed to be moving forward ("I have one word for you. Plastics.") to the one image I remember from the evening news, people clinging to landing gear of the last helicopters leaving the embassy roof in Saigon. For part of that time, my family lived in Germany, where my father was stationed, and my parents remember living in increasingly empty military family housing while the U.S. papers arrived, days late, with headlines denying any troop draw-downs from U.S. bases to Vietnam--while new families arrived from the States only to be told their belongings were already on the next transport back and dad was on his way to the war zone.

Get back to where you once belonged--

Living in chaos has become familiar. We had no idea what was coming toward us, no more than watching a movie about a disabled kid on TV is anything like seeing him live.

Of course, it goes far beyond Robert and whatever his physical limitations have imposed on him and on us. The last few years as Congress and the political system have imploded into a snarling, incoherent mess, the economy has tanked, and healthcare is hardly accessible or stable--these last few years I've found it difficult to keep my footing. Not only did I never envision life with a disabled kid, I never imagined having to protect him through all of this social and economic chaos. You could say I'm waiting for deployment, but to where, I don't know. In time, my paperwork will come, handed to me, undoubtedly, by some stern figure wearing a uniform of some kind.

The front this week will be neurology: two appointments, one at Children's and one at Hopkins, both of them focused on diagnosis, or, rather, lack thereof. There will be an answer--right? As John's voice says on the album, now we're going to play Hark the Angels. Indeed, we will.

When I look over our medical bills, the EOBs, the various paper detritus of receipts and forms and discharge summaries of the last 13 years, which take up several large boxes in the attic and run close to four or five thousand pages (ok, that's just a wild guess, but probably not too far off), I do wonder--I do--if someone's out there saying why can't she just let it be?

A bad pun, I know, but an honest one. Most of this week I've been re-visiting the Beatles' music, not so much from nostalgia as from a broadening sense that the music is all about transition, a transition I know well, from playful exuberance to weary confusion and complication.

Will I ever be nostalgic for this time, right now, when I'm 64? Yes. Absolutely. I'll remember the times when my gaze connected with Robert's, and the way his earnest smile transformed his face. The Christmas break we spent watching movies all night, Robert's legs across my lap, head pressed against my shoulder and my arm around Edith on my other side. Trying to wrap the outdoor lights around a tree that had grown too tall for us to reach its upper branches.

And yes, I'll also remember our versions of the crowds in the streets, the panic at the gates, the tanks, all of that.

The last album the Beatles released, Let It Be, was actually the second-to-last recorded. Abbey Road was the last album they recorded. Abbey Road officially concludes with a song called, "The End." One of my cousins, or so I remember, took her favorite quotation from that song:

And in the end--
The love you take--
Is equal to the love you make.

Robert's genome sequencing: backstory

Some number of weeks ago, I walked from my office the few blocks through the parks that buffer the Senate office buildings from Union Station. The bank, the Senate Credit Union, was my destination. To reach it, I walk past guard booths and gates that mark what are now, post-9/11, blocked-off streets--major streets, like 1st & C Streets NE, as well as parts of Constitution and Maryland Aves. When I was younger and worked in the Dirksen Senate office building, which is joined with the Hart Senate office building, which is where the bank branch is located, all of these streets were bustling with traffic: buses and cabs and private and security vehicles. I still find the relative desertion of these streets jarring, especially as the traffic lights have still not, a decade later, been taken down, still blinking one signal or another.

One public entrance to the Hart building is at the rear, on C Street, reached by a series of broad sweeping steps in a soft-colored marble. Senator Debbie Stabenow's office with the Michigan State seal is still to the left of the entrance, although I suppose the security guards would stop you should you try to veer left before leaving your bags on the screening belt and stepping through the body scan.

The security check point wasn't there in the spring of 1987 when I ran into this guy I kept thinking would ask me out, the two of us walking in different directions on the pinkish marble tiles in the ultra-modern building. When we stopped to chat (and, again, he didn't ask me out), just beyond the hallway was the nine-storey atrium, which, had we simply walked past one another, would have revealed with each subsequent step closer more and more of the enormous steel sculpture that seems almost jammed into the atrium the way one would force an unwieldy object into a closet.

The sculpture has been in the Hart atrium as long as I can remember: I have no memories of the space without it, yet it forms merely a backdrop to whatever it is I've experienced there, whether the event of those first awkward run-ins with the man I would eventually marry, whether the sighting of Senator Barack Obama (post-presidential campaign announcement and pre-Secret Service protection) walking round and round in circles in front of this massive steel triangular-ish 3D multi-sided black riveted head-craning objet d'art, ignoring it as well as he talked on his cell phone, but catching my surprised face with its mouth open wide in surprise was not too busy to flash me one of his enormous beautiful grins. I have also seen Senator Shelby of Alabama walking near this sculpture, also ignoring it, but Senator Shelby doesn't smile much and, when he does, it's unconvincing.

Usually I blow through the corridor, the full scope of the atrium to my left, the black heavy legs and base of the sculpture at the edge of my field of vision, and push open the glass door of the Senate Credit Union just at the opposite edge of the atrium.

This time, exiting the credit union, I decided I would walk round it--maybe I did that, once, long ago, but the thing about the Senate, the thing about Congress, is that everyone (or most people) feel the need to affect that perpetual busyness, that inner compass of absolute direction, that does not permit letting aimlessness surface, an aimlessness sort of ambulation necessary to absorb the impact of art. Which is to say, everyone walks with purpose by and around this sculpture and no one ever looks up.

Vaguely worried the Capitol police might ask me what the hell I was doing wandering the full perimeter of the sculpture, I did just that. Calder, I thought, walking up to it, it must be Calder. Of course it was: Alexander Calder, Mountains and Clouds. Designed in 1975, Calder delivered the maquette to the Architect of the Capitol in 1976, returned to New York and died the next day. The sculpture was finally completed in 1986.

Looking at the image of this sculpture on the web, you might be tempted to believe you can "see" it. You can't. As I said, it fills the atrium, and my first thought was that the whole thing is misplaced and needs a far bigger display space. Even backing up toward the wall and the elevators next to it, the viewer cannot take the whole thing in. The neck is bent upwards, the eyes shift back and forth, but, from the ground, one only sees the work in pieces. From the ground, the 4,300 pound aluminum clouds are visible by tilting the head back so precariously as to invite vertigo.

Perhaps that's the point. Not the vertigo, but the closeness and the fragmentary nature of viewing the piece. The mountains are always there, some sort of geological joke about eternity, and, clouds, ubiquitous, so often above our heads. But how often do we look? And what do we really see? Especially of things that are so much a part of a backdrop, an experience, a life, as to be, therefore, in their omnipresence, invisible?

And what does this have to do with Robert?

When I walked to the bank that day, I was, by late afternoon, to become extremely frustrated with our latest queries into Robert's diagnosis and treatments. But I didn't know that quite yet, the way one cannot see something very looming and large and beyond the scope of whatever the eyes will frame in increments.

At about 4 pm that day, I received an email from the genetic counselor for Dr. Gropman, Robert's neurologist at Children's Hospital. In October, we'd decided to repeat a neurotransmitter test we'd first done in 2003. This test, performed at a single lab at Baylor University in Texas, analyzes the byproducts of the metabolism of neurotransmitters found in cerebral spinal fluid. The analysis can tell you which neurotransmitters appear to be deficient, but it can't explain why: whether these neurotransmitters (which assist with chemical signals within between and among cells and organs, involved primarily with movement, but also aspects of cognition) are deficient between metabolism is faulty or failing, or whether the body cannot produce enough of them to begin with. Seeing the parts and pieces and bits, but not the whole structure.

In 2003, when we discovered that Robert was deficient in the byproducts of the metabolism of dopamine and serotonin and a couple of other lesser-known biochemicals, we were ecstatic. In 6 years of searching for any sort of data that would provide clues to Robert's profound illness and related disabilities, this test finally gave us something, something we could point to and use to frame, nay, lay a foundation for understanding Robert's problems. My son can't move well because dopamine helps to conduct the signals that enable fine and gross motor movements. My son responds to Sinemet because the drug gives the body the precursors to the manufacture of dopamine. My son can't repeat motor tasks indefinitely because insufficient dopamine re-uptake causes a faltering inability to make the same motion more than a few times (imagine the teacher who claims your child doesn't know an answer because he can't endlessly raise one hand for yes and one for no for the full hour it takes to administer a test). My son cries at sad music uncontrollably because serotonin regulates the brain's emotive centers.

In 2011, Dr. Hyland of Baylor University told us that all of these tests were normal. And, in fact, that these tests of the byproducts of the metabolism of certain neurotransmitters seemed to indicate that Robert did not even have a metabolic disorder--which every single esteemed neurologist he has seen over the course of 13 years has recognized as a distinct possibility based on the clinical presentation and the limited medical data. Not the least of which was his most recent MRIs, which showed the classic brain damage of a person with Leigh's syndrome, a mitochondrial disorder (a category of metabolic disease). No matter that we can't find the gene defect for this; at least we had a concept.

It was like this: for 8 years, a city grid was laid out for us and our doctors and teachers and friends. Vehicles traveled through this grid--we didn't know where each and everyone of them was going and most were occupied by strangers, but they traveled on city streets we could name and intersections that appeared to be governed by functioning stoplights with the occasional red light runner and the tourist who pauses at the green light wondering whether right or left is the proper direction. Then. Then someone barricades off those streets so that traffic can no longer travel on them. Suddenly everything is empty, yet the traffic lights of our understanding and expectations continue to flash in a coordinated manner, the way the mind moves for a while after a shock as though life might still be quite normal.

Fortunately, life moves on multiple parallel tracks. This summer, we'd been connected to Jimmy Lin, who has started a nonprofit to enable families with undiagnosed children to access genome sequencing. Rare Genomics Institute, the nonprofit, had established its website in the fall, interviewed 3 or 4 families to pilot its work, and begun to connect those families with the specialists who could help them. The funding mechanism is crowd sourcing, a form of fundraising through social networks.

Robert's fundraising page had been set up. In fact, I'd agreed to be interviewed by the Baltimore Sun as part of an article about Rare Genomics, an article that appeared about 10 days before the Baylor tests came back negative, unexpectedly. Wire services had picked up the article, and it ran in papers in Indiana, Arizona, South Caroline, Illinois, California, and Oregon. By early December, we'd raised $1,400, almost all of it from total strangers who had read those articles. I cannot describe my reaction without using the simple cliche: I was blown away by American generosity.

Our own press forward with fundraising had been held back a bit--we wanted to get past that round of testing we'd been waiting on, we wanted to think carefully through how best to approach friends and relatives, we wanted to be careful and do it right. And we were side-tracked with the enormous number of holiday and end-of-year tasks that constitute the medical and social services bureaucracy of Robert's care and treatment.

[And, my dear regular readers, if you're still out there after my spotty posting this fall, on November 4, I was notified that I'd been awarded a MacDowell fellowship in non-fiction, which gives me a month of support at their artist colony in New Hampshire to work on the book I'm writing about Robert. And I thank each and every one of you for reading as I've worked on this material, because the project started with this blog. So--the award was also its own kind of special distraction.]

But, on December 11, after 3 weeks of living with the shock and awe of those test results, I couldn't stand it anymore. Years ago, as tests came back negative and normal, as what-was-wrong loomed obvious and frightening and damaging, the lack of diagnosis relieved me. No one could prove to me that Robert would die or be profoundly limited or impaired. I was free to treat him normally, to believe in him because no one could definitively tell me otherwise.

But now, after all of this, after my city in ruins, so to speak, I want to know. And genome sequencing offers the best chance at knowing. No, it cannot promise miracles, it cannot absolutely promise it will find the defect in the winding haystack of the same four proteins that in different patterns constitute our height, our hair, our skeletal structure, our propensity for disease--but it's my best chance. Like Mountains and Clouds, the answer is there somewhere, and, even if at ground level we can only see it in bits and pieces, maybe there's another platform from which we can see much more.

So I posted the Baltimore Sun article on Facebook on December 11, just threw it out there, as well as the link to Robert's page. And I asked people to re-post. And they did. And the money just started coming. In 48 hours, we were about 75% there, and by last week, when Robert was hospitalized with pneumonia, we went over the top of the $7,500 we needed to raise.

And this experience was like having walked by Mountains and Clouds every day, never looking up. Every day, I see only a portion of my friends, my acquaintances, and the faces of strangers I've made eye contact with while taking Robert out and about. Sometimes, the vast sculpture of the people whom we know--who are, in themselves, a work of art, people from all the parts of my life, connected and constellated and omnipresent the way we all are in a socially networked universe--becomes visible, all at once.

And I thank you all for that--those of you whom I know, those of you whom I didn't. Those of you who passed the message on, even if you couldn't give, those of you who gave even if it was a sacrifice to donate only a few dollars, those of you who gave more than I had any right to expect--all of you who cared to in one way or another contribute your support, monetary, emotional, both, all.

I praise you. And my New Year's resolution is to pick up the slack reins of this blog and let you know how it all proceeds for us as we move through the next rounds of medical intake eval, treatments, and tests. In early January we start meeting with doctors about sequencing. This story may not have a definitive end, but I will post as many of the chapters as I can. And I'll continue to write, as I have in the past, about the other challenges Robert faces.

And the guy who seemed as though he would never ask me out thanks you, too. Because eventually, a question is asked and the answer is yes, and then yes, and then yes, again.

Better or Different, or, Different and Better. Or not.

The longer I live in the DC area, the less conscious I think I am of the skin tones of the people around me or the appearance of disability, and the more conscious I seem to be of my own whiteness and my own ableness--of where I start and stop. The self as an enormous pale balloon knocking softly against the boundaries of objects and people. Is there a difference, I wonder, between an awareness of noticing and an awareness of being? If I am not one thing or person, must I be another? Can I even claim to be less conscious of another and more conscious of my otherness?

Listen, boundaries are all around us. The one I sense most keenly these days is Rock Creek Park. Those who live in Northwest DC and the northwestern suburbs have little reason to cross the park. Once a week, though, I cross it at Military Road. I make a left hand turn from Connecticut Avenue onto the narrow confines of Military and I head east past comfortably large homes with manicured lawns. At the intersection by St Johns College High School, Military becomes a four-lane road that resembles a highway as it rolls and loops through the park. Not that you can really see the park. Just the trees on either side. The time of day I cross, the police have set up speed traps--it's too easy to go 50 in a 35 mph zone--and at the same bend in the road, all the traffic slows down in unison.

Abruptly, the park ends as the road slips under 16th St and becomes Missouri Avenue. While this is still northwest DC, in fact, it is no longer Northwest DC. Just as the street is no longer Military Road and the road was once but is no more again like a highway.

And you would think the place would be different than the streets and the houses on the other side of the park. But not so much. On the left side, kids leaving school. On the right side some apartment buildings and then across Georgia Avenue, tidy brick homes. Maybe a little smaller, maybe not so many tall trees overhanging the street.

And on I go through neighborhoods that are supposed to be different, in which I'm supposed to be different, in which Robert is probably the same--someone different from different. And Edith is in the car, too, reading her book and paying no attention to much of anything outside the car. Probably because it doesn't seem much different to her.

And what my grandmother used to say when she didn't really like something but wanted to be polite was that it was "different." But that's not what I mean. I just hear it as a constellation of vowel and consonant sounds and understand its meaning to be something not this, when not this is just another place next to this one. But then someone sets a park between those spaces and asks us to consider the road we're on as either a bridge or a barrier.

Robert's aide, James, meets us at HSC Pediatric Center, which I get to eventually after I cross into northeast, or Northeast (it depends on how much you want it to differ), via Missouri (which becomes Riggs Road) and South Dakota and Michigan Ave. James goes a different way to meet us, even though he is also coming from Bethesda because his eyes lit up when I said, can you meet us at this place on Bunker Hill Road? And he said that that was in his old stomping grounds, not far from where he grew up. His high school was near there, but he'd never been, he thought, on this other end of Bunker Hill Road. So he likes to take roads over that go by things he knows or used to know.

Regardless, he meets us at HSC weekly so he can also learn how to stretch Robert. We are at PT.

While this is a long way to go for PT from Bethesda, it's the place I chose. Robert's physiatrist communicates most easily with therapists at either Children's or at HSC, which coordinates some care with Children's. Both are a ways from Bethesda, but choosing anything close to my house would be choosing to have Robert do PT as a form of silent meditation on a little island of my own insecurity. Doubtless someone I know might or might not tell me that there are better physical therapists on my side of the park and that may or may not be true or it may be that "better" would be the word my grandmother might choose were she alive today instead of different. Because death is really very different. Not being, that is, as opposed to being.

HSC is farther than Children's, but I chose it because I brought Robert there for an equipment eval and it was homier than Children's, and, furthermore, everyone there seemed not to react at all to how different Robert is. Which is the difference between HSC and Children's, where the therapists, I think, deal with many more of your garden variety disabilities and surgical rehabilitations. HSC is where kids go when doctors at Children's are thinking long-term rehab.

And I am so comfortable in the waiting room even though I am so very white (I really am exceptionally pale) because Robert is not especially different from any of the other kids who wait for their appointments. And we are all, who wait, free to smile at the antics of kids who are, in context there, just kids cutting up and misbehaving. Robert tries to do his extra-loud snoring just to keep up appearances.

This last visit I caught myself learning how to understand where I stopped and Robert began. Our PT, Jen, had called me at work to describe the braces she wants Robert to wear when he's resting to maintain a hamstring stretch. Robert looked rather skeptically at the brace, which was really not so simple, but a structure with straps and a metal hinge with dials at the knees, dials that adjust the tension of the brace. The sample model was black, but we told Robert he could have whatever color he wanted. Or even two different colors, one at the calf and one at the thigh.

I had talked to Robert's therapist (because she's not really our or my therapist) about the fact that Robert really doesn't like to wear this stuff. Can you just up and ask a kid if he'd be psyched to wear a brace like that? The answer would undoubtedly be no.

We went over it, me and two PTs. Edith read her book. And we didn't go over it with me, we went over it with Robert. Picking the color or colors you'd like to wear is just for appearances. What really matters is what the brace does. The brace helps you to straighten your leg, we said, a little bit like what the baseball players do when they're injured. Same, but a little different. Dustin Pedroia, we noted, wore a brace when he broke his ankle and did his rehab. And if you can straighten your leg, you'll walk much better in your walker when it comes, we said. Did he want to be able to use the walker? Oh yes, he showed us with his 'yes' hand, he did. James assured him, as James follows several sports while I follow only the one, baseball, that rehab is rehab, no matter who you are or how many yards you've rushed or RBIs you have or how many miles that wheelchair has traveled.

What was most important to me and to Robert was that it was his decision to get the brace. Which he'll be fitted for at another appointment.

Before we went back, we stopped at the BP station on South Dakota because the vending machine at HSC didn't work and Edith wanted some Zingers. Walking into the BP station, I wondered, briefly, if they would have Zingers and whether or not they would be fresh. Because sometimes, at gas stations, the snacks are not at all fresh. The only thing that caught me by surprise was the attendant behind a very thick sheet of plexiglass with that drawer underneath where you can insert your money, but not your hand, for example, or anything larger than your hand. The plexiglass reminded me that I was on this mythical other side of the park, the one that hardly seemed to exist when I drove by all those neatly kept houses on one end of South Dakota and on Michigan Avenue. But the attendant flashed me a big smile when I bought the Zingers. Maybe because I bought a Hostess vanilla cupcake with orange frosting for myself--the most exotic thing I'd seen lately in terms of snack food--to go with the chocolate cakes for Edith. Of course, I smiled back.

And we returned through the dark across Rock Creek Park on the road that could be a bridge or could be a barrier. To where things are supposed to be better and nothing is really different.

This side of anesthesia

I recognized that everything was black. An interior sensation--that was the first thing. The second was someone calling my name, once, then twice.

I opened my eyes and I was back in it. Just exactly as I was told. The last thing I remembered was asking the anesthesiologist whether it was normal for my arm to feel numb. Then nothing. Then the other side.

I'd walked into the operating room with the nurse by my side pushing the IV pole. My primary focus was to avoid bending my elbow as the hep lock was in its crook. I'd been through too many episodes with Robert in which the IV was dislodged, and re-inserting the needle hurts.

Most of Robert's recent surgeries and procedures have taken place in fairly small outpatient rooms. It's been a while since he's had anything in a surgical theater, and, even then, I accompanied his white-sheeted gurney only to an antechamber.

This surgical theater was larger than I expected, with equipment pushed to the perimeter. It was pink. The ceiling was high and the lights were bright and the operating table was in the center with two long trays for arms set out akimbo like snow angels. I admit I felt an involuntary surge of concern. Maybe it was habit. But I'd never actually been under anesthesia--epidurals and local plus Valium are not the same. Even this was not general--just a heavy sedative.

I've never even fainted, let alone lost consciousness to anything but sleep. Anything that would, as long as it ran through my veins, prevent waking.

Of course it was fine. I knew it would be. That's the logical thing to think. And this was just a minor operation on my foot: I'd developed a hematoma (or so I found out afterward) that refused to break up and dissipate, instead inconveniencing me by growing larger just below the ball of my foot. Walking without pain is a good thing.

In the meantime, as I was moving day by day toward this scheduled procedure, Robert had started breathing strangely. Not that he was gasping for breath, not that he couldn't breathe or was breathing raggedly. No none of that.

Robert can make a breathing noise that no one can imitate. Sometimes we call it his scary breathing noises. Sometimes we call it his Darth Vader breathing. It involves a sharp intake of breath that medical professional refer to as 'strider' breathing, so sharp that the effort of it sucks in the inverted triangle at the dip in the collar bone. The entire effect of it is on the intake, and the noise is a rattling roar with just a touch of a mild honking at the outset. Letting out the breath is a mirror image, but softer.

I felt I understood something about this as I was plowing through John D'Agata's About a Mountain, and one of his digressive riffs mentioned, in passing, that the human larynx contains many more folds than we actually use, the residue of evolution. In a handful of cultures, worldwide, humans are able to use these folds for some vocal effect.  I thought, aha, Robert, in his spare time, has figured out how to make those parts that no one wants or needs dance to his tune.

Most often, these noises he makes are communicative. He's bored. He wants to draw our attention to something. He wants a change. He wants to annoy us.

For several days leading up to my surgery, Robert made these noises non-stop. We joked about them with him--we asked him if he was in his rebellious teen mode and whether he was trying to annoy us. Sometimes he would smile. We made many efforts to try to figure out what he might need.

The noises continued unabated, until last weekend, he made them for hours at a time. One afternoon, he made them non-stop from the time I picked him up at school, through the drive to HSC, through physical therapy, on the drive on the way home. In the house. I tried to tell myself: the kid is disabled, I have to try to talk with him, I've got to figure this out. And I wondered if it were normal for sensibilities to go numb because of this. But over 3 hours of a noise loud enough to drown out the radio or the TV? Let's face it. I snapped. You have to stop it, I said loudly, no one can stand this, no one can.

Of course I felt an instant remorse. As instant as a flush of pink powdered breakfast drink stirred into milk. Because then it occurred to me that maybe he couldn't stop this. Maybe there was a problem. His mouth often hung slack while he honked and rattled and wheezed and, eventually, coughed.

Robert had had botox for spasticity on October 7. Unlike other parents who google absolutely everything, do their homework, come up with questions, I find myself simply deciding to trust Robert's doctors. I figure that's their job. That is, if what they tell me makes sense. And this did. Maybe the botox will release some of the spasticity in his legs making him uncomfortable. Maybe it will increase the range of motion in one arm. What do I know? I have advanced degrees in literature. I don't know how Google is going to arm me with the same information gleaned through 4 years of medical school and years of residency and practice.

At that point, I do what I'm told. I take my kid to the hospital at 4:30 in the morning. I don't give him any food after midnight and give only clear liquids up until the cut-off time.

What do I know? So I googled "botox" and, of course, came up with a pile of information difficult to evaluate. After sorting the idiot scare pages from those that offered some sort of rational information, I concluded that botox could, possibly migrate and affect breathing and musculature other than what the injection aimed at. On the other hand, Robert was not struggling for air or in any sort of respiratory distress.

So I called the doctor who administered the botox and left a message. In an even voice, rational, stating what appeared to be the objective facts. I am long beyond panic. Panic does no one any good.

Having made the phone call, I tried not to feel anything and just wait for the other side. That's what leaving a message about your child is like: a going numb, the last few said things, then nothing. Then the other side.

The nurse called back, asked a lot of questions. She called the doctor. She called me back. We should take him in.

Because of the anesthesia, I was still a little groggy, not even sure I was making sense. As I'd been told, I would forget things on and off most of the day--codeine made it worse, my brain in a gray zone in between thinking and nothing. So Roger took Robert in.

Robert came back wearing a neck brace, as though he'd been in a wheelchair accident with his friend Greg, and their DME insurers were arguing over the details of the incident and the blame. The white foam collar provided support to his neck and minimized the awful, deadly breathing noises. Most likely, the botox had migrated.

He looked a bit bereft. Maybe embarrassed at the brace. But I remembered calling his name once and then twice, his jaw slack, his eyes staring ahead and ignoring me. The breathing at bay, he started meeting our eyes again.

And we were back in it. Exactly. Re-inserting the needle hurts.