An Update, An Audition, and some Really Nice Photos

Dear Family,

“When illness is blamed on one or more of the 'three Gs'--genes, germs or God--it's really a cop out. It's basically fatalism, saying that there is nothing we can do about our illness, when in reality, iIllness is a message from the universe, telling us that we need to change something--the way we eat, think, feel and live. But when we blame in on the three Gs, we forego the opportunity to change ourselves. ”

—Sally Fallon Morell

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Ivyisms:

“Yem” = Jem “Ben” = (used to be both Ben and Jem, but now just) Ben “Yiya” = Eliza “Wanda” = her good friend and neighbor, Rhonda

“pumb” or “pumby” = cucumber “pep” = pepper “bunt” = button “Yuck” = lip balm “Cunk” = unknown, but possibly Turtle and/or Small Bite of Food "Jack" - jacket "Fing" - finger “Otay” - okay “Pum!” - I want to come! “beep!” - nose “Tiss” - the cutest-ever way to say Kiss, as in “Tiss!!”-me-on-the-head-before-you-leave-so-that-you’ll-always-and-forever-remember-my-smiling-baby-cuteness…

Ivy doesn’t just walk, and she doesn’t just run - this girl can now hike. On a recent journey up one of the nearby mountains, it was actually almost miraculous to note that her feet - only a couple of inches long - can actually keep her tiny body upright while she staggers and climbs and descends and traverses sandy, rocky, and mountainous terrain. She mostly hates the baby carrier. She will put up with it for a while, but she becomes so bursting to get out that eventually she will cry “out! Out!! OUT!!!” and lean despairingly to any nearby Other Person who might be willing to extricate her from such a freedom-impinging Situation.

Then she gets down, and Ivy Begins to Hike, while keeping a runny commentary, which goes something like this:

“Wow! Wow! Oooooh!” Stopping to pick up a rock: “Rock! Rock! Rock! Ooh!” Running a little way forward, and then slowing to deal with some obstacle or step: "Oof! Oh, wow, Oof! ….Ah!” She makes it over the other side: “Oh! Wow! Ooof!” Hiking forward a few feet, she notices a cactus, which she always responds to in the same way: First she points at it, and says quietly, “Owie. Owie!” Then she gives it a wide berth, carefully makes it around, and then she gives a gentle wave in the cactus’ direction, and says, “Hi!” Then she continues along, till she sees a rock, or an interesting plant, or a bird. “Bird! Bird!! Bird!!!” Another boulder in the way: “Oof. Wow. Oof! Ah! Oh. Yeah! Wow!” Etc.

Ivy is more expressive with fewer syllables than anyone I know.

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Elizaisms:

“Liki kipala koala” - the name she came up with for a stuffed toy

After sneezing repeatedly over the course of a few minutes: "This is a very blessyou-ie day for me!"

Leaning over backwards and then rotating in the shower: “My back parts...my front parts...and now I'm washing my armpits in an unusual way!”

“In my new clothes, I'll be the most beyootiful girl at the playground!” Eliza, everyone is beautiful in different ways! And everyone has different kinds of clothes they think are beautiful. And there's a saying: clothes don't make the person! That means: how you look isn’t the most important thing in life. “I think clothes do make the person! Except jackets.”

Surveying our beautiful new camper, while we haul all our stuff out of the old pop-up camper: ”I’m a little sad that people won't say anymore, 'you guys have a cool set-up!'"

At the Nutcracker: “I love all the things they're wearing! They look itchy, though.”

An uncharacteristically calm morning: “Do you know what I was just doing? I was lying in bed, thinking about Eliza things!”

Eliza, why did you switch your dress? The other one was so nice? "Because I love switching!"

“I’m gonna save my money for a camera, a dress that goes down off my shoulders, a teacup set, and high heeled shoes just for when I'm older - that's what I've been thinking I want."

Feeding Ivy: "Do you want more? ...a big healthy bite!"

After reading a book called Legend of Indian Paintbrush - "that's much more interesting than I thought it would be!"

“Can I write something that's not true?”

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Jemmerisms:

Peeling off his layers: "Why do they make buildings so hot!?”

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Bennerisms:

Concerning rock-climbing strategy: "You have to not get worried.”

Noticing his social challenges, and feeling for a minute a Large Desire not to be different: “Mama, I’m worrying... because other people like Eliza can say things like 'I miss you', but it’s hard for me to say it even though I did miss you!"

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Jem and Ben would like to note that they’ve been having a lot of fun making movies with our friends and neighbors. We’ll soon send out a link to their most recent work!

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I won't say much here about the past few months of Eliza Challenges, except to note that my Theories relating to Our Family’s Health continue to (mostly) hold up under scrutiny. More relevantly, we implemented three action steps that appeared to Effect Definite Positive Changes in January. I always hesitate to draw conclusions until a lot of time passes, so I will report back later. For now, it's been almost six weeks since a marked reduction in screaming, whining, and rigidity - plus a definitive increase in Food Consumption. No miracles, and still plenty of symptoms, but of a much more manageable, subtle variety that ushers Cautious Hope.

(Sorry, Loren, but I still pretty much think that the most important action steps anyone can take in this life, relating to any health issue, involve Improving and Tweaking ones Diet to make it super nutrient-dense and comprised entirely of Real Food, while Avoiding Crap and Food-Like Substances.)

Anyway, after another six weeks of Okay-ness, my PTSD episodes might even quiet down to a dull roar…

During Times Of Stress like this past December/January, Jeff copes by putting his head down, doing his best to look on the bright side, and figuring that we can't change the situation so the best way out is working our way through with as much good grace as we can muster. I, on the other hand, feel there is ALWAYS a way that we can promote healing and better health, and so my immediate reaction is to research, try to think though, problem-solve, figure out what might have triggered a Problem, decide what we could change in order to make things better, and good-grace be damned if it’s at the expense of having the energy to carry out Action Steps. During moments of crisis I always feel like I need to try harder.

As you can imagine, these two very different approaches can cause friction at times, but in the end Jeff and I have a pretty amazing partnership of skills. Due to these skills, we got through December and January both. With any luck, one of these years we will be out of the woods and we'll just bask in peaceful relaxation, surrounded by hardworking, tidy, obedient, meal-consuming, No-Tantrum children.

But imagining the hereafter is getting ahead of ourselves.

For now, “better than January” is more than good enough.

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Especially fun books we read this fall:

Hector and Hummingbird, by Nicholas John Frith Bloom, by Doreen Cronin and David Small Goldilocks and the Three Dinosaurs, plus others by Mo Willems Mary Poppins, and Mary Poppins Comes Back, by P.L. Travers Boom, Snot, Twitty, by Doreen Cronin and Renata Liwska Pen pals, by Alexandra Pichard Everything we can find by Kevin Henkes

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Current Height Stats:

Jem 4'6.25" (138 cm) Ben 4'8" (142 cm) Eliza 3'6.25" (107 cm)


Random notes from the past three months:

— We love hanging out with our friends here in Joshua Tree! We have landed in an awesome community of five families, plus town is only a mile away, good hikes abound, and it is a really super lovely spot to spend a winter. The worst aspect of the desert in winter is the wind - occasional several-day bouts of it that make everyone hole up and think longingly of sunny, calm days to come…

— I got a bad flu on my 37th birthday, so there wasn't a whole lot to celebrate except for the 75-degree weather - a truly fabulous gift!

— Thanksgiving was an equally gorgeous day, no wind and sunny and perfect - an outdoor feast with friends...only tinged with sadness because our families are so far away...

— Have I mentioned how amazing it is to be in a warmer-than-the-northeast climate during the winter?? Prior to this year, only once in my life - for one weekend when I was about eighteen - did I ever go to a warmer spot (southern California) in the winter. After the past few months…well, I have to say that it’s hard to imagine wanting to spend the winter in a cold climate ever again.

— Despite our sadness for being so far from our immediate families, one nice thing is that here we’re closer to some west coast family on my mom's side - so some of us have shared visits with Aunt Sheryl, and recently Cousin Jake. (Hey everybody back east, wanna come live in California?!)

— Over the past few months, Jeff and I watched a bunch of movies, including:

“Trading places” “Gone baby gone” “Fletch” "Joy" "Away We Go" “Midnight in Paris” “The Artist” “Oceans Eleven” “Baby Mama”

We also went to Palm Springs so that Jeff could take the boys and a friend to see "Dr. Strange," which they enjoyed immensely. We took all three older kids to see “Hidden Figures,” which was a really fantastic movie that we each enjoyed in our own age-appropriate ways.

— A great word: Negentropy.

— Something I underestimated prior to December: how cold it feels to camp when it’s thirty degrees at night (thank god for sleeping bags!).

— Something I had no idea was possible: that we (including Jeff!) could acclimatize to cold nights…while having better than average sinus congestion.

— My first impression of L.A.: at least 37 bajillion people recklessly driving really nice cars on enormous freeways in the rain. In better weather, the effect is a lot more sunny, and there’s great weather in the winter, and lots of Culture, but still: Really. Horrendous. Traffic.

— Eliza and I had a great time going to the Nutcracker with Aunt Sheryl in December. Some things never go out of style: white tulle, Clara's blond baloney curls, white fake snow, Christmas trees that grow, sugarplum fairies. Ballet is always what it is: muscular male dancers occasionally appear, but they’re almost always outnumbered by female dancers by about 17:1. Ballet is a form of dance best suited to emaciated, breastless women who, when they are flexible and and move gracefully in prescribed ways, create an amazing artistic effect. I often try to spot those women who manage to leap as if they are not wearing hobbling shoes of torture on their feet, whose footwork is precise, who move with the appearance of ease and weightlessness that indicates great strength. And I know: ballet’s totally sexist. Boys get parts even when they can't dance, and are a head shorter than the girl they are supposed to partner (who has been dancing for roughly three times as long as the boy). Eating disorders run rampant. And yet I absolutely love ballet! Do I still wish I could be a ballerina when I grow up? Am I sad that I didn't strive for this, my ambition at age eleven?? Only a very teensy tiny bit. Mostly I enjoy watching, my emotions swelling with the music because I know the incredible sensation of dancing and flying and doing a grande jete while having left my Thinking mind far behind, both free and entirely supported by a movement structure that determines even the angle of ones pinkie fingers. When you are doing ballet, your flight is free and totally controlled, and I loved it. Love it still. And I hope that my kids might love it someday too, and also that neither of my daughters ever want to become a ballerina…

— Ben enjoyed celebrating his thirteenth birthday on a day that wasn’t sub-zero or even close to it. We had an awesome day at the national park with friends, and my three older children took me on a rock-climbing-scramble through a large cave, over some crazy cliff-like rock ledges, along some vertigo-inducing pitches, and reminded me about one of the best reasons to have kids in the first place: so that they will take you places you wouldn’t otherwise go, but are glad you went, after all.

— Wonderful things: * Living next door to good friends whom I used to not see ever! * Cooking outside almost every day. * BEING outside every day. * My mommy is coming to visit next week!!! :) * Being married to the super awsome-ist most supportive and optimistic (not to mention handsome) husband ever, after “all these years” (I officially met Jeff over half my life ago!). * The gentle way Ben is with his sisters. * The way Ivy motivates Jem to read by asking him to read picture books aloud. * The way Jem calls Ivy "my little fluffy puff!”, and how she laughs and runs to him. * The way Eliza manages to combine a princess and an intellectual into one tiny, athletic, blond body, possibly raising the odds of her future survival by 183%.

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Update from Jeff

I'm here. I tend to keep quiet when I'm overwhelmed, and I've been overwhelmed for like a decade.

I kind of lurk on [family letters], but I love hearing what everyone is up to.

Congrats on your excellent [astrophysics PhD prep] exam results, Loren! One of my very first memories of you was pushing buttons on a calculator and saying, 'Push. Push. Push.' every time you pressed one. I woke up to that one morning in the Route 53 house in Prattsburgh.

Well done getting a new job that doesn't eat up your life, Matt! Your turn, Michelle!

Cool to hear that you're making good progress on your book, Theeny. Pretty recently someone reminded me of Stephen King's book, 'On Writing'. The Patterson videos you mentioned made me think of that.

Keep fighting the fight, Jake! Sorry we won't get to see you here in Joshua Tree, but we'll be seeing you very soon in Seattle.

Ruth, that artist quote [Emile Zola's advice to Paul Cezanne: "In the artist are two people, the poet and the worker -- One is born a poet but one must become a worker.”], especially the part about work, made me think about this article I just finished about how hard work is important and all, but there's a whole lot of luck involved:

http://nautil.us/issue/44/luck/dont-tell-your-friends-theyre-lucky

As for me, I'm chugging along doing telecommuting work with the very good people at the Colab Co-op in Ithaca. We just finished a new web site theme for the Cornell College of Agriculture and Life Sciences, and we've got a big project just starting for the Vermont Law School, moving them from a home-grown content management system to Drupal.

Seems like everyone is watching The Good Wife, but I've been enjoying the hell out of an Amazon (!) original series called 'Sneaky Pete'.

I also spend enough time playing 'Plants vs Zombies Heroes' on my phone to make Sara want to have an intervention. But I can quit any time I want.

And I am very, very grateful to be in a warm(ish) place with near-constant access to the outdoors. I may never be able to live in a cold climate again…

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Update from Sara:

When someone asks me how I’m doing, I often feel like I have a six-way split personality, so I occasionally hesitate before saying “good!” (A more detailed response would first require clarification: “Do you mean, how am I as mother of Eliza, or mother of Ben, or mother of Jem, or mother of Ivy, or mother of four, or wife of Jeff, or Family Health Researcher…or are you wondering how I am, personally-speaking?? If it’s the latter…well, that’s a difficult question to answer, because I honestly don’t know!”)

Those close to me might have observed, during the recent Eliza-crisis, that I (and probably Jeff, though I will let him do his own reporting someday if he chooses) have become what is commonly described as “burnt out.” When things are so stressy, and kids’ health feels so intrusively awful, and there seems to be little time for anything in our days besides Coping and Cooking and Chores…well, anyway, I can lose track of hope, enjoyment, and hobbies - and I most especially stop appreciating all the wonderful things in my life.

So it is with some amazement that I notice where I am right now, doing two major things for ME which I have wanted to do for very many years…

The first big thing I am doing: embarking on a multi-year adventure of orthodontics, during which I will probably end up with 8-10 different appliances, braces, several implants, and - if I am lucky - a Very Differently-Structured Jaw than I have now. The end result will hopefully look good, but the primary goal is better function. Over many decades, my malformed jaw has created a bite that drives grinding and clenching and joint pain that is shattering my teeth, wearing away bone, creating neck and shoulder and jaw pain, promoting tooth decay, fostering worsening gum problems that have resisted all attempts at scrupulous care and other interventions (even the gum surgeon said she couldn’t do anything for me until I halted the tooth trauma, which can’t happen with such a terribly aligned bite), and a mouth full of compromised teeth that - without help - won’t last my lifetime.

The orthodontic treatment I have begun will - if it works - bring both my jaws forward, allowing my upper and lower teeth to meet while the jawbone stays in its socket (an impossibility now because of a >5mm differential between my maxilla and mandible), and both expand and widen my arches to make room for several more teeth. I have researched the topic of jaw development extensively over the past seven years, and am really incredibly grateful to be able to get care from an orthodontist who often deals with complicated cases such as mine with such a forward-thinking approach. Time will tell if it works out. For now, I can’t speak for shit since my mouth is full of appliances, I’ve had a (painful) tongue-tie revision (surgery) to allow for better tongue function (once I’ve completed my physical therapy assignments for my tongue, that is…), and everything is only just beginning! But from the perspective of Scientific Inquiry alone, it’s not like I have much to lose, and I’m so curious how it will turn out. :) With any luck I’ll post some before and after photos in a few years’ time.

The second big thing I am doing must first and foremost be dedicated to my amazing and supportive husband, who, strengthened and made more energetic by the Sunny Desert Air, has taken on more household responsibilities AND encouraged me to do a Very Big Thing. Which requires me to be out of the house from 5:30-9:30pm EVERY WEEKNIGHT for six weeks. Which requires him to do the bedtime routine for four kids solo EVERY WEEKNIGHT for six weeks. (Have I mentioned how amazingly awesome Jeff is? And sorry, as I’ve mentioned before, he already vowed to stay married to me Until The End of Our Time and so he’s definitely not Available Husband Material.)

Anyway, right. The second Big Thing: encouraged by many friends and family members and My Mother, I auditioned for and got into a Musical Theatre Production! Of “Mary Poppins”!! In which I play a bit part of Mrs. Corry, but also get to sing, DANCE, act, and do theatre for the first time since I was a teenager!!! I was so nervous about the audition, but I can’t remember the last time I wanted to do an activity so very much.

The first week of rehearsals was utterly exhausting, and Ivy was expressing her displeasure by howling at me during the day and screaming during the night, and I was convinced the play would be too stressful and tiring and my family would hate me and I should quit “Mary Poppins” and it was a terrible idea and I never should have started.

The second week of rehearsals was less tiring but still pretty chaotic, and it felt like all I was doing was cooking and driving to rehearsals and probably my family was completely resentful and maybe this was still a bad idea, but I do really love dancing and this is like the best ultimate dance class, and I decided (with Jeff’s support) not to quit, plus Ivy was sleeping better.

The third week of rehearsals was…so much fun! And it was just SO fun. And I found time in between cooking to read to the kids, and the sun came out more often with warmer weather during the days, and Jeff and I had some nice walks, and life in general just felt better, even the poop-wiping and whiny-kids and spoon-feeding and Health Issues and not-so-fun bits.

And then this weekend came around, and for the first time in recent memory, I thought to myself: “Gosh, I haven’t spent as much time with my family this past week as I wish, and maybe we could take a family outing on Saturday morning!” We all went to the farmers market today, and had a picnic at the park, and I really haven’t looked forward to a family outing so much in about a bajillion years. Or at least a very long time.

I am so excited for “Mary Poppins,” and if it turns out to be a good show, and you happen to be in the vicinity of 29 Palms, CA during any weekend in March, do come by the theatre for some supercalifragilisticexpialidocious (yes, I can now spell that briskly and in time to the music!). :)

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I said to Jeff that it’s not too many women who would go for a Urine Separating Dry Toilet for daily use (in our new camper, we have a C-Head toilet, which separates pee into a jug while poop lands in a bed of sawdust and is later stirred with a churn to coat and dehydrate) (as you might imagine, with six people using this set-up, the bucket must be emptied every two days).

In reality, though, I actually campaigned for this toilet, because the idea of using a standard RV set-up (low-flow water toilet emptying into a “black tank” that requires toxic chemicals in order to keep everything liquified and not incredibly stinky for all inhabitants, not to mention Really Frequent Emptying into specific dumping facilities) filled me with as much joyful anticipation as I ever get when preparing to clean the bathroom, multiplied about ten thousand times (in case I didn’t describe that equation clearly: the amount of my Joyful Anticipation for Blackwater Dumping equals a VERY negative number).

Anyway, Jeff - manly man that he is - offered to take on the role of Toilet Emptier. I’ve emptied it quite a few times myself, though, and this toilet is way way way better than the alternative.

Here, a dry toilet makes even more sense because we can piggyback on Maya and Damian’s humanure system, which means we’re actually composting our poop AND using very little water, to boot.

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Interesting Links:
 After all these years, experts are still finding that it’s a good idea to homeschool your kids! http://www.businessinsider.com/why-kids-should-get-homeschooled-2016-8

Interesting mental health treatment notes: https://riordanclinic.org/wp-content/uploads/2014/12/The_Schizophrenias_Ours_to_Conquer-Riordan-Clinic-Books.pdf

Kelly Brogan is beginning to publish some awesome mental illness recovery interviews: http://kellybroganmd.com/alis-story-healing-bipolar-disorder-and-suicidality/ and http://kellybroganmd.com/shaunas-story-from-bipolar-to-vital/

More on euthanasia from Kelly Brogan, who is also beginning to receive notice for her unconventional NYC psychiatry practice: http://kellybroganmd.com/euthanasia-last-stop-for-depression/

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Rose Little Bush By Eliza

Once upon a time there lived a girl and she had one brother and three sisters and her mother and father had left. She secretly followed them behind them. And she picked roses with her parents not looking at her because they thought she didn't come. They just turned their heads and they didn't find her.

Then some nice looking people passed by and said, "We can give you all our dresses!" They hid by a bush and they gave the girl all their dresses and skirts and stuff and walked home naked. Then they turned into mermaids.

And then they missed their friends a lot and then there was a thunderstorm but they did not care, and nobody cared. They stopped at a sign and arrived at their house and lived happily ever after.

The end

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Frozen By Eliza

Once upon a time there lived a girl named Elsa and her sister Anna. But Anna was the only one who knew Elsa’s secret: she could shoot ice powers! But their mother and father sunk in a ship, and Elsa and Anna were lonely, and one day it was time for Elsa to be crowned. Elsa was becoming queen.

She hoped she could make it the whole ceremony, but she got so annoyed that she ran up the north mountain. And some soldiers came up looking for Anna and Elsa, and they found Elsa but not Anna. Elsa saw them, and she looked out to see what was happening.

There was Anna, outside, and Anna said, “Can I come?” and Elsa said “Yeah, just because I saw some bad guys!” And Anna said, “Great!” and she followed her up the mountain.

The End

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The Slizery Slide by Eliza

Once upon a time there was a castle, and in it there lived a princess. And her name was Slizery Slide. She went to a slide that said, “My name is Slizery slide!” And the girl said, “My name is Slizery slide too!”

The father slide said, “My name is hello!” And the boy said, “My name is Hello, too!” They stopped by a stop sign, whooshed over people’s heads, and whooshed over houses, whooshed over tress, and whooshed over people and whooshed and whooshed till evening and lived happily ever after. The end.

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Cinderella by Eliza

Once upon a time there was a princess who lived in a castle, and her name was Cinderella. And she had step sisters - Felicity Carmelony, and Cinderlissa, and her stepmother, Felicity Fongoola. And Cinderella was treated very bad. One time there was a ball, and Cinderella snuck into their room, put on one of their favorite dresses, and went to the ball without them, and danced and danced. She came home, put the dress away neatly, and went to bed and slept till morning. She woke up, and cleaned the floors and did everything she could, and she loved being how she was.

The end of Eliza’s story.

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The Slithery Snake by Eliza

Once upon a time there lived a snake. It slithered all around. It slithered around, it slithered over people, over coat hangers, over slides, and it went into people’s shirts! And came out their noses. The slithery snake traveled into peoples brains, and out their heads, and into their houses, and most of all he wanted to go to the park where he could eat people and a girl named Cinderlelly, who said, “We must have a snake in our own snake bed.”

—-

This is a puppet show with Elsa and Anna in it. by Eliza

Elsa stayed until her sister pulled her back in the castle, but she ran right back and Anna was all alone. But the queen stayed overnight, and in the night she had both of their parents right by both of their sides. And when they woke they noticed their parents were next to each other. And they ran and ran with their parents, and they lived happily ever after.

The end.

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This is also a puppet show. by Eliza

Once upon a time there lived a swan, but she turned into a lady. But she was still a tiny kid! So she married a king and a wife and they went to Palm Springs and they dragged a long cape until the kid grew so long that she had a rainbow dress with a very long tail that led all the way to different cities. And they lived happily every after.

The end.

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Dear Ila,

Thank you and I'm glad to hear what you have! I hope I see you soon! I have bigger clothes now because I'm growing out of my other dresses and clothes so I got new ones. There are a ton of airplanes here in the morning. I wanted you to know I have a friend here named Oliver, and I hope you are feeling good.

Love, Eliza

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So there you go - a snapshot of the chaos that is my crazy beautiful life.

And here are some photos, all frowns removed or glossed over, so that even the horrendous days look glamorous, and the good days look as exceptional and awesome as they are: https://goo.gl/photos/s1FTxnTTvc4x4yUj8

Much love from the desert, Sarabeth