“we came, we saw, we took away and we left behind, we must be allowed our anguish and regrets.”     ~ adah price

i’d like to say unequivocably that i liked the poisonwood bible, but i can’t. and i don’t exactly know why.

i enjoy authors who write with a healthy dose of Language and Poetry – or, to be more exact, language as poetry. i found the 5 different voices that barbara kingsolver created to tell her story to be a wonderful device, giving insight that a more traditional narrator couldn’t have. some of the points of view – especially adah’s - contained exciting verbal gymnastics that blew me away. and i absolutely love a good malapropism – especially when used both for humor and illumination.

but, even though i greatly enjoyed the words, i lacked a deeper attachment to the characters which created a distance from the narrative. i wanted to care so much more than i actually did. i wanted to feel – really feel – shock, fear, confusion, sadness and joy when the characters experienced it, but i just didn’t. that’s not to say that they weren’t fully realized, authentic, fascinating and believable. they were.  i just wasn’t touched by them and their stories in the way that i know i should have been.

i don’t remember ever working so hard to like something. or trying to figure out what is holding me from it. all of the elements that go into my favorite books – interesting and well-developed characters, creative storytelling, a sense of place and time, language as poetry - are there. and yet. my reading experience lacked an emotional resonance. i haven’t found myself, as i often do after reading a great book, thinking about the characters/story and Feeling Something. i can’t put my finger on why.

i borrowed one for my cruise last february and it was so perfectly wonderful. my dad, stepstep-mom and step-sister had pretty much packed an entire suitcase filled with heavy heavy books for the 3 of them and i had 15 books in my small purse, including the kind of resource books i would never in a million years take on vacation. convenience completely overruled any issue i might have had with needing the feel of a book in my hands. i became enthralled with the idea of not adding clutter to my bookshelves and decided that i would probably want to get my very own kindle when i got home.

after my trip, i wanted to share excerpts from the parents guide to autism and the special needs handbook with josh. hm. finding passages wasn’t quite as simple as i wanted it to be. i told friends about some of the books i’d read, war by sebastian junger, just kids by patti smith, the hunger games trilogy by suzanne collins. my excitement was contagious and they wanted to borrow them. oh. i hadn’t thought about that pretty major bummer. not being able to share a book that i had enjoyed was a letdown. i also grew to not like the idea of buying a book that only existed in digital space. so i returned the borrowed kindle without a shred of sadness and moved on with my life.

so what’s happened? i just learned that the library loans ebooks on kindle. that’s… interesting. also interesting is how much prices have come down on kindles. so i find myself wondering if it makes sense to acquire a device just for library books.

after going on a cruise last february where i kind of read like it was my job, i can’t get enough of words. in the last several months i’ve read more than i have in the last 7 years. i also found my library card, which: yay!

at the moment, i am halfway through a pretty good ya series that is totally engaging, but not something that will stick with me long after i finish. i’ve been trying to figure out what to read next. and so, when i finish the mortal instruments, i shall embark on a new mission: read some actual “literature.” i’ve asked several trusted reading friends for recommendations and i’ve looked on the internets at several lists (1001 books to read before you die!) and have come up with a little bit of a plan:

i have a list of 50 books. i am going to read them.

i shared this list with friends, laura and carol, and they are oddly excited to hop aboard this book club for one, making it a book club for three. except not really a book club with assignments and deadlines. i’m not much of a joiner and deadlines make me a bit sweaty so we’ll see how it goes. the idea of having people – smart, awesome, funny, insightful people – to talk to about what i’m reading is definitely alluring. a little more daunting is that laura wants to blog about it… together. bring on sweaty and nervous-making. i know how uptight i get when online reviewers don’t keep up with what i deem to be an appropriate schedule. i’m seeing how writing about reading feels with this post then will make up my mind later. for now, we have a private blog set up where we’ll work it all out. maybe i’ll share some things from there.

so the plan…

first…

• poisonwood bible by barbara kingsolver
• cold comfort farm by stella gibbons
• pillars of the earth by ken follett
• crime & punishment by fyodor dostoevsky
• trainspotting by irvine welsh

then

• dune by frank herbert
• elementary particles by michel houellebecq
• autobiography of alice b. toklas by gertrude stein
• i capture the castle by dodie smith
• anna karenina by leo tolstoy

 & after that…

• remains of the day by kazoo ishiguro
• satanic verses by salman rushdie
• war of the worlds by h.g. wells
• the lonely passion of judith hearne by brian moore
• middlesex by jeffrey eugenides

& after after that…

who knows? maybe i’ll need a break and go back to working my way through doctor who on dvd. or maybe i’ll need an easy palette cleanser and return to harry and elizabeth. or maybe i’ll be on a roll and will continue making my way through the list of 50. there are no rules to this. just what catches my fancy.

while i’m at it, any thoughts about the 15 starter books? how about any recomendations?

i can’t even begin to express how much i love movies. watching them, working on them, writing and talking about them. a good movie transports me to the untamed west, lowell massachusetts, pre-ww2 britain, the 4th level of a dreamscape or a world where toys come to life. honestly, i’m even a sucker for not-so-good movies, allowing myself to be taken to argos, hogwarts, persia or sherwood forest. although i can certainly get my judgey on, i approach the movie watching experience as open-mindedly as possible, filled with a childlike willingness to be pleased. i want to be entertained, affected emotionally and sometimes intellectually challenged. i want to laugh, cry, hide my eyes behind my hands, gasp, be amazed. for a short time, i want to be someone and somewhere else.

between work, kids and having the stoopid opposite schedule from josh, there’s not much time to see movies in the theater. our depressing goal every summer is to see 1 movie a month. 1 measly movie a month! of course, i watch movies at home a lot, but it’s not the same experience. not terrible, just different. no popcorn. no darkened cavernous room filled with strangers having a communal experience who will undoubtedly need to be shushed. no excuse to turn off the phone. no giant screen that completely demands my attention.

there is a time of year when i allow everything else to be undone and i go to movies with reckless abandon: oscar time. over the years, awards season has instilled a kind of movie watching ocd for me. i must see as many nominated movies as possible. for about a month every winter, i approach movie watching like it’s my job.

the crazy thing? for some reason the people in my life allow it. while on winter break, i take my kids to daycare. a matinée is only $5.50…if you don’t include the $10 an hour for childcare. i’ve convinced josh that double features on football playoff sundays are a totally fair exchange. i take long lunches away from work – not many, just enough to feel like a really bad hooky playing girl. did you know many hotels have movies that are in between their theater and dvd release? i may or may not have talked myself past a corporate sales rep to watch movies in empty rooms. and, of course, every netflix delivery contains oscar movies. it is a luxurious and lovely couple of weeks every year enhanced by the thrill of creative scheduling, sneaking away and the simple gesture of checking things off of a list. seeing 8-12 movies in 4-weeks can also be a little intense. the movies start to mix in my memories and dreams.

the oscars create an artificial excuse for me to feed my movie addiction. and addiction it is. the more movies i see in the theater, the more movies i want to see in the theater. i’ve fantasized about extending the obsessive behavior beyond awards season, but my kids, my job and josh might demand their rightful place in the priority order.

i’m feeling pretty good heading into oscar season this year. nominations, announced january 25, will give me my official list of movies i need to see, but i’ve been working off of critics best of lists. all in all, i think 2010 was a pretty good year for movies. i’m not really one for predictions. what the heck do i know how people will vote? my favorite movie tends to be the one i saw last. i am fickle that way. i hope true grit, toy story 3, inception, the town and the king’s speech are properly recognized. they have stuck with me the most.

the other night, i was reading he bear, she bear  to my kids at bedtime. it is primarily a book about gender equality but, as this was my 312th reading of it, what struck me beyond the boys-and-girls-can-do-the-same-things-thing was the universe of possibilities. when you’re a kid, your future is wide open: teach, put out fires, be on teevee, fly airplanes, paint, play music, direct traffic, write, drive a truck or a train, join the circus, be a parent, farm. whatever you can dream of, you can do. exciting, right?

after the kids were finally asleep, i couldn’t stop thinking about that. what will my kids want to do when they’re all growed up? hell, what do i want to do? then the serious bummer, where do limitations step in? mortgages? food? responsibilities? i know all too well what can happen to creative people when faced with the reality of financial and time constraints. unless some serious luck is at play, it can a lifelong struggle to maintain creative momentum and enthusiasm. nothing comes easy. the circles in my head led me back to something i keep forgetting about, which i now want to share. are you paying attention because this is what i really mean to talk about:

have you heard about kickstarter?

kickstarter is a funding platform for creative projects. it is a way for artists, filmmakers, musicians, photographers, writers, explorers, performers and others to bring their dreams to life. it is community oriented d.i.y. fundraising. they believe that “a good idea, communicated well, can spread fast and wide” and also that “a large group of people can be a tremendous source of money and encouragement.” it is free to post your idea. there are some really cool ideas. check out thier faq page. a quick googling showed me that there are other similar fundraising platforms out there, too, indiegogo and united states artists.

i double dog dare you

lucky me to know so many creative people, whether it be with music, words, sewing, food, art, film. i challenge you to put a kick-ass project on kickstarter and i will help fund and promote it. like i said, there are some very cool projects on kickstarter, but not cooler than some of the things i’ve seen in my own circle of creative types (yay! probably if you’ve made it this far down, that’s you!).

ps. ultimately, this challenge totally applies to myself. i have deep seeded issues with my own creativity – like just fucking doing it and also the paralyzing fear of sharing something i’ve created with anyone. but i am also easily motivated by good role models. maybe someday, inspired by my own community, i’ll work up the nerve and organization to flesh out one of my ideas and put it on kickstarter. exciting, right?

• contribute to joyful, relaxed, silly, adventurous, intellectually stimulating, happy, creative and love drenched childhoods for emmit & jasper
• create educational funds for every child i know
• travel:  african safari
• travel: road trip across usa with josh
• travel: japan
• travel: civil war vacation
• travel: nigg village and loch in scotland
• travel: leichtenstein
• have dogs
• learn how to sew
• learn how to make indian food
• eat dinner at french laundry
• make the perfect loaf of bread
• create & maintain “dandy walker on the rocks,” a special needs blog/newsletter as a place to help parents find information
• grow rhubarb, raspberries, cucumbers, flowers & fruit trees
• buy art
• learn conversational french
• travel: visit all 50 states & all 7 continents
• spend actual time in sisseton
• be a member of the academy and vote on oscar movies
• live in another country for at least a year
• write thank you notes to everyone i’ve ever met
• travel: attend a wedding in india
• own a working ranch in montana
• own time shares in new orleans, california, hawaii, paris
• travel: wine country in US, france, italy, spain
• travel: australia & new zealand (lord of the rings tour!)
• own a horse & ride it often
• start a photography business
• write screenplays
• work on a western movie
• become a sparkling wine connoisseur
• read more books
• watch all of the afi top movies and every oscar nominated movie
• get degrees in american history, photography & ww2 history
• learn all of the british royal family lines 
• make the perfect pie crust
• travel: great wall of china
• teach a film class about westerns
• blog more about movies, special needs, photos, stories, cooking
• eat sushi often
• travel: italian villa with friends
• have a daily dance party with josh, emmit & jasper
• be on the same schedule with josh
• do yoga every morning
• write letters regularly
• travel: england, ireland, scotland
• travel: santa fe every year for indian market
• travel: mexico
• be grateful every day

what am i forgetting? what would be on your list?

the same is true for developmental milestones. a multitude of websites exist to inform parents if their child is right on track, ahead of schedule or falling behind. the bright and shiny world of information turns dark and unfriendly when there is an actual issue. neighbors want to ease worry, saying things like “boys are usually slower” and the google becomes a scary scary place when a child doesn’t make eye contact, crawl, walk, talk when they are supposed to.

since emmit’s first seizure in january 2009, when we learned that his “boys are just slower” delays were caused by a dandy walker brain malformation, information has come in fits and spurts. since dwm is relatively rare, there isn’t a lot published about it outside of medical jargony articles and there’s not much of a community to belong to. there’s no pamphlet entitled “here’s what it means to have dandy walker” or “dandy walker and you” or “how i learned to stop worrying and love the dandy walker.” i’ve had to work for every scrap of knowledge. by work i mean, ask questions. by ask questions i mean, research without getting freaked out and figure out what questions to ask and get over the concern of bothering doctors with random phone calls.

over the last several years, i’ve recognized the necessity of becoming the squeakiest wheel i can be. i’m still learning how to do it. unsure and scared, parents of special needs kids have to ask questions and ask questions and ask questions some more. it’s not easy. i didn’t even know what questions to ask and a lot of times i was terrified of the answers. at one point, i asked emmit’s pediatric neurologist something i knew, but desperately needed an official to say: do seizures kill people? the simple answer is no; someone having a seizure can be in danger of other things like hitting their head or drowning, but the seizure itself isn’t a killer. i actually got choked up as i started speaking, but pushing through the fear of the words eased my anxiousness about the seizures. just a tiny bit, anyway.

once i found the tiny shimmer of understanding about emmit’s physical and developmental issues and progress, i also discovered the never-ending paperwork squeaky wheel side of special needs. welcome to the spinning world of insurance, hospitals, therapies, medicaid, supplemental security income, special needs programs… ahem, i digress.

lately, i’ve started wondering about things that are part of emmit’s special-neediness (hm. specialness?) that might not be caused by dwm. things that more closely align with autism. so we’re starting down that path: evaluation, diagnosis, action plan. in some ways, it’s like starting over again, learning about something new. except it’s still emmit, no matter what diagnosis he has, which is a lesson i’ve learned with time. to get to this point, another beginning of another path, i have to instigate. where i want to be able to sit back and have someone – doctor, therapist, teacher, expert – tell me what to do, the momentum has to come from me. that’s a scary responsibility. i’m obviously not a medical professional, how can i be expected to know stuff? and how can i be expected to pick and choose from all of the information out there to make sure i’m doing the exact right thing for my kid? eek!

parenting a special needs child is a process. a marathon, not a sprint. i need to remind myself of that often. instead of getting overwhelmed, i need to remember that all of the challenges don’t define emmit or us. it’s okay to stress, fret, lose sleep, worry and wallow. the important thing is to then turn around and celebrate, enjoy, laugh, love and just generally get on with our chaotic life.

waiting for school bus

we considered a wide range of animals that could have the nerve to break into our garage. a mouse? a rat? a cat? a squirrel? a racoon? chupacabra? catmousratswirrelcoon? nope. but of course, OPPOSUM!

this is not the actual little dude that josh trapped in the garage – baited with a plate of nutloaf and cinnamon rolls – but it looked exactly like it as the sheriff (thanks megan!) carried it in the feral cat cage to release it. isn’t he… not at all cute?

OPOSSUM!

i sure wish our chupacabra looked more like this opossum. clearly, he’s thinking, mmmm…pie.

from fantastic mr.fox

my goal was to share stories and images throughout the whole process. unfortunately, i got caught up in how wrong everything was going with my creative renewal journey rather acknowledging the journey i was actually experiencing. i’ll share those stories soon, but right now, i want to start at the beginning.

my proposal from january 2009:

 Uncertain and anxious about the future and trying to flee a broken heart, I bought a one-way ticket to New Orleans the summer after I graduated from college. I hoped to escape life until I figured it all out. The next six months were a magical adventure. I worked several interesting and somewhat questionable jobs – barker for a rat-infested alligator-themed restaurant, cocktail waitress at a gentlemen’s club – all for tips and under-the-table pay. I made short films, wrote poetry and screenplays and took photographs. I was off the radar and I loved it. It was wild time, filled with energy, hope, adventure and creativity. Returning to Indiana for what I thought would be a pit stop, I got nabbed by love with a writer/musician and decided to stay for a while, putting my dreams of working on Big Serious Movies on hold. That was sixteen years, two kids, a historical home rehab and a happy-eyed pooch named Erl ago.

 When I started working in film, I found a way in through the production department. Taking care of schedules, vendors, actors and the crew came naturally to me. That led to working on concerts and events and ultimately to planning arts and cultural festivals for the Eiteljorg Museum of American Indians and Western Art. Each step offered more security and stability – what my father refers to as “growing up and having a real job.” This “real work” suits me. I meet incredible people, see beautiful art, witness talent and creativity and help it grow. I shuffle the line between creative outsider and insider. I belong and don’t belong. I take care of the clutter so creative people can be free of it. Instead of creating things myself, I manage the little things that get in the way. I encourage. I cheer. I nag. Professionally and personally, that’s the role I’ve chosen. It’s a good fit. I’m good at the details. I feel pride in playing my part, but it isn’t who I’ve always been. I once thought of myself as one of the creative people, but over time I fell into the security of what came easy rather than risking something, and I chose safety over adventure.

 My work at the Eiteljorg is very satisfying, but not conducive to my own creative needs. I feed my creative side scraps, photographing my children or writing my blog. It isn’t enough. The multi-faceted, adventurous and interesting person I thought I was has morphed into someone else unfamiliar. I am disconnected with parts of myself, holding steady in the safety of “real work” while suppressing a need for creativity. As my own disconnectedness deepens, I put up barriers with my artists and even my partner. As job demands have grown and I’ve had to choose what to do myself and what to assign to assistants, I delegate those tasks that once gave me closer contact with artists. Subsequently, I have become less engaged with the artists whose work and friendships I cherish, which affects how effective I am at my job as well as the relationships that make it fulfilling and fun.

 This disconnectedness is a chasm of who I am and who I would like to be. I need balance, yet the simple act of acknowledging my creative side is difficult for me. I am hard on myself. If I say I’m a writer, where’s the manuscript? If I say I’m a photographer, where’s the portfolio? I need to risk something or stagnate. I need to choose adventure and creativity. For me, that means reconnecting with my love of photography and writing.

 Capturing a moment in someone’s life is to freeze a piece of their story: a smile, a laugh, a sparkle in the eyes, a shared instant between two people. At once singular and timeless. In photography and writing, personal perspective is a good thing. I have always been an avid writer for myself, filling dozens of journals and keeping a blog. After the birth of my son, as is the case for many new mothers, I found myself with my camera always in hand. Soon, I wanted to photograph all of the children I knew. With my portraits, I want to create a range of images that captures the essence of the subject in that moment; thoughtful or playful, still or in motion. It is time to take a risk and merge photography and writing into a single story.

 Perhaps because I come from a large, close-knit family – my great grandparents married in 1897 and 112 years later there are more than 1,600 people directly descended from them, many of whom still live in my tiny hometown in South Dakota – I feel a need to connect with people. I want to tell their story – the connection between generations that is guided by family folklore and pictures, some contemporary and vibrant, some faded and tattered. And, through my portraits of them, I want to rediscover, nurture and share my sense of adventure and my creativity. I want to tell my story through the story of my family.  

 With that in mind, I will use the Creative Renewal Arts Fellowship to improve my writing and photography skills through workshops in New Orleans as well as taking the time to practice; to upgrade my equipment and software; and to travel to South Dakota to photograph and interview family members, young and old, to try to capture stories before they are lost. I will also go through boxes of family photographs rescued from farmhouse attics, closets and basements and scan these images before they crumble away. With these images and stories, within the format of an online photoblog, I will create a family “portrait,” creating a connection between past and present, perspective and reality, intimate and far away. I will use the opportunity to reconnect with my family history to strengthen my skills as a writer and photographer as well as learn new skills in post production and archiving old photographs.

 Reconnecting with my family history will provide a stronger connection to the Native American artists that I work with. So much of their cultures is family oriented, and their work and worldviews are unapologetically personal. Even professional relationships are intimate. No conversation is simple. Nothing is ever just, “when is the deadline?” or “how does my work fit within these guidelines?” There is always a story, and, if you’re lucky, sometimes two or three. If you are open to artists and their work and use your resources for their benefit, you are welcomed as family.

 Reconnecting with my creative side – finding my balance and learning to straddle the chasm of “real work” and creativity – will help me reestablish the relationships with the artists that are necessary to performing my job and to being an artist advocate. Reigniting my creative side will open me to the highly personal level of communication needed for my work. Opening up to the adventure of creativity will reenergize me and help me see myself not as outside of the world of my artists, but as an important participant in the creative world.

 With this Creative Renewal Arts Fellowship, I want to change my outlook, my energy, my perspective. I want to see myself in a new way by remembering and reinventing my sense of adventure and creativity. I want to accept my creative side as a valid part of me. I want to renew the balance found in reconnecting with myself and to the artists I work with. I will be a better advocate for artists because I have recognized that if I don’t fill my own tank, I’m no good to anyone else. I’ve always intellectually understood that theory, but have been too afraid to act upon it. The opportunity to take a leap of faith in myself will awaken a long-buried side of me that will make me a better artist advocate, a better partner, a better role model for my children.