Cassidy On Flickr

These pictures are a little old (she's a bit bigger and, of course, at home), but they are still nice pictures of The Sprout.

We Have Built Jerusalem

I will not cease from mental fight,
Nor shall my sword sleep in my hand
'Til we have built Jerusalem
In England's green and pleasant land

-William Blake

This is the text of a post I made on Burning Man's official blog last week. The original text of the blog can be ready here.

I’ve never read this blog before but, as the things being discussed here will have a direct impact on my family, neighbors, and myself, it behooves me to comment.

My name is Jason S. Walters and, along with my wife and daughter, I live almost directly across the street from the Fly Geyser. We are some of the roughly thirty inhabitants of the Hualapai Valley. In fact, there are nine inhabited ranches, farms, or facilities in the valley: Granite Ranch, Midian Ranch, Black Rock Station (of course), Dog Ranch, Jackson Ranch, Orient Farms, the Fascio Ranch, and the Spoo Place. Though I am a relative newcomer having only lived there full time for three years, there are people who have lived in the valley for decades. The valley’s population includes two children, and that number will probably increase over the next few years.

I’m generally a fan and a friend of Burning Man. I’ve attended the festival ten times and have numerous friends that work full or part time for Burning Man LLC. The community of Gerlach (our town, in essence) benefits economically from the event, and its spinoff company of Black Rock Solar has done fine work putting up solar systems for the high schools in Gerlach, Nixon, and Wadsworth. I’ve also seen Black Rock Station evolve from what was basically an 80-acre junkyard into an organized, well-run facility… in part due to a bit of arm twisting from neighbors and Washoe County, but that’s water under the bridge, as they say. In the end the LLC put its money where its mouth is and built a great facility. And that’s what counts.

I like art too. Especially art that catches on fire and explodes. That’s part of what’s cool about living in the Black Rock Desert.

BUT… and this is a very big but… ultimately those of us who live in the Hualapai Valley do so because it is remote, seldom visited, and has a low-population density. Or, to put it another way, we live there because Gerlach is too crowded for us. So what sounds like a very exciting project to all of you sounds kind of threatening to our way of life, especially if the goal is to make the Hualapai Flats the permanent home of the festival itself. That’s…kind of hard to contemplate, though I know it’s been there before. I was at that one myself.

Still, Tina and I sacrificed everything to get away from San Francisco. Now it looks like arrangements are being made to bring the city we fled to our doorstep. #sigh# There’s probably a lesson there somewhere.

In any case, I’d like to ask a few questions of the Burning Man LLC, as once again this project could effect my family. What do you mean by a “conference center,” exactly? How big will it be? How much will the traffic on State Route 34 increase? How much noise will its (presumably large) diesel generators create? How many more people will live in the valley? How will it effect the antelope, mustang, and other animals that currently rely on the property for their water?

Is the Bright Holland Corporation selling you the water rights along with the property? If not, are you aware that there are very real long-term plans to pump the Hualapai Valley’s water to the Reno area via a pipeline? It’s not talked about publicly, but the “nervous politicians” mentioned in the post certainly know about it. After all, the Hualapai Valley is one of only two places in Nevada where basin-to-basin transfers are still permitted under state law: and if they do build that pipeline, that geyser won’t stay one for very long, no matter what they’re telling you.

In conclusion, there’s plenty of room in the Black Rock Desert for everyone. There may even be plenty of room in the Hualapai Valley for everyone who wants to actually live there. But with all of the discussion of “community” on this blog, I would like to point out that the Black Rock Desert already has a community of some 300 or so people, including those of us that live in the Hualapai Valley. What is being proposed on this blog will definitely impact that existing community. And, while we are generally neither “progressive” or even “interesting,” we do actually live there – and I fear that few of us were included amongst the beautiful people being fed appetizers and drinks under the moonlight.

-Jason Walters, Midian Ranch, 1287 State Route 34

So, what's my problem exactly? It's this: Burning Man as an organization exhibits exactly the same behavior as the BLM (Bureau of Land Management), an organization which they have close ties to, when it comes to the people that live in the Black Rock Desert. Both organizations operate as though we are naughty children whose input could not possibly be of any value, even though what they do often effects our lives. If fact, they don't care enough about what we think to even call us together in our own community center and lie to us. At least Washoe County does that!

It's arrogant and insulting.

I understand Burning Man's motivations. Every religion needs its Jerusalem, and they can take the one million dollars a year they spend on leasing the Playa from the BLM and spend that on building permanent facilities in the Hualapai Valley: housing, meeting spaces, stages, coffee shops, and the like. It's a free country and they have a right to do this. Maybe it will even be fun and cool. But why in God's name does it have to be across the street from us?

“The Kid's Alright, And The Kid's All Right”

These words of wisdom were spoken by my wife Tina a few days ago and I think them to be true. But before I explain, let me take a moment to confirm something that many of you have already guessed: things didn't go smoothly with Cassidy's birth. She's still in the Renown NICU (Neonatal Intensive Care Unit) in Reno thirty days after her birth, though her condition is greatly improved at this point. I am fairly confident that she will be released shortly, though these things cannot be rushed and are in all ways beyond our control. Cassidy will decide when it is time for Cassidy to go home, and there is little Tina, the doctors, or I have to say about it.

Before I continue, I would like to thank all of you singularly and collectively for the congratulations, goodwill, and – in the case of those of you familiar with the situation – advice and support you have had to offer over the last month. In particular I would like to thank my family, the Tina's family, and the people of Gerlach, Nevada for your support and encouragement. I would also like to thank our friends and colleagues at Hero Games, Indy Press Revolution, Blackwyrm Books and Games, and Flash Messenger for your support (and patience) in our time of trouble. When I can I will take the time to thank many, many of you personally, either by phone, email, or in person. I am sorry that I have not done so already.

This has been the hardest month of our lives. For the first few weeks we were, to be blunt, as crushed as a pair of beer cans unfortunate enough to encounter John Belushi's forehead. Tina has stayed by our daughter's side continually in what can fairly be called a superhuman act of motherly devotion. I have had to move back and forth between Reno and Gerlach in a not-always-successful attempt to keep our affairs in order. But we've already cried our tears over things we can't control and feel confident in our ability to move forward, doing what is necessary to help our daughter have a happy, independent, and successful life.

The Bad (what went wrong and why)

Cassidy was born with the chromosomal disorder known as trisomy 21: better known as Down's Syndrome. As is not uncommon with children suffering from Down's, she was born with a heart condition (two actually; one major, one minor) that caused her blood to oxygenate poorly. She quickly contracted pneumonia, which led sepsis, as her immune system was not fully formed (though Cassidy wasn't born prematurely). The first two days were extremely touch-and-go. She nearly lost her life. Then she spent the next two weeks intubated and on morphine being fed intravenously and through a tube.

The experience was extremely heart wrenching on many levels, some of which I've only begun to grasp.

The Good (what didn't go wrong)

Cassidy is a reasonably big baby: eight pounds, one ounce at birth, about nine pounds right now. Her size may have been what saved her. She has recovered completely from the pneumonia and sepsis. Her lungs are functioning well, her major heart problem seems to be sorting itself out. The minor one will probably take care of itself as well. She's quickly getting the hang of eating on her own. She's still on low-flow oxygen, but she should be off of that within the month (we may take some equipment home with us). Her eyes are open, she seems alert, and is all-in-all a cute little sucker.

There are many health problems beyond the developmental and mental capacity issues associated with having Down's Syndrome. (As much as one can be said to “have” something that isn't really a disease.) She's had a couple of them already: heart problems and pneumonia, to be specific. However, thyroid malfunction and poor muscle tone seem not to be issues (though the tires quickly). Her vision seems good and I think her hearing will turn out to be within the normal range as well.

Down's Syndrome has extremely variable effects on the individuals it afflicts, with no two cases being exactly alike. We are optimistic about her intellectual development, which we can and will have considerable influence on. Though there is a small chance that she will be severely retarded, mild or moderate retardation is more likely, with hard work on our part as parents reaping measurable rewards (as is true for any parent). There is even a tiny chance that she will suffer from no retardation at all, though this is unlikely.

Observations

I want to thank the many of you who have contacted me with information about friends and family members with Down's. I knew little about the syndrome before Cassidy was diagnosed with it, and am heartened to learn that there are professional chefs, stockbrokers, housewives, motivational speakers, successful actors, and college graduates with Down's. I was also encouraged to discover that the average life expectancy of a person with the disorder is currently 65 and expected to climb higher (100 years ago it was, rather shockingly, 9). I also wish to thank the many of you who have prayed (and, in the case of at least one friend who is a Buddhist, chanted) for the well-being of our family. I believe it has helped.

I have met several remarkable people in the course of this experience – people who, in our time of pain and distress, worked hard to calm and assist us. I would like in particular to thank Linda from the Nevada Bureau of Early Intervention Services, Randy from Renown's Social Services Department, JoD and Darnell from Reno's Ronald McDonald House, and Mrs. Anderson from Reno's branch of the Social Security Administration. I would also like to thank the NICU nursing staff at Renown Medical for their professionalism, understanding, and the tender care they have given our daughter.

I have had many insights into life, my own shortcomings, and the power of love in the last month. As time goes by I will share them with you. But, for now, keeps us in your thoughts and prayers.