Time Slows Down

Today, twice I double checked my phone for its clock... it seems that I gained extra time in this Peet's Coffee shop. That almost never happens to me. It could be that this is the first true alone time I have had in weeks. 

I worked on the book for a bit. I need to use my bigger screen at home to get the paragraph spacing right, and see the layout.. and try to get the pagination right ( and trimmed so Squid doesn't cil me.) It is exciting to work on it. I know we don't have an agent.. that there's no flashy book tour, but I feel good knowing that the proceeds all go to SEPTAR and there are kids who might read the words on those pages and feel just a little bit better, a little less alone. God willing and the creek don't rise, the book should be available mid-November.

Jake and I went to urgent care yesterday. He does not have a broken meta-tarsal, as was feared. After a few x-rays we discovered he had only chipped a little tiny bit off of a little bitty bone. Given that one quarter of all the bones in the human body are in the feet, it is not surprising that he would break something. We are having the convergence I think of a few things:

• Jake has profound disabilities. He is unable to effectively communicate when he is in danger or injured. 
• Jake does have cerebral palsy. We forget this sometimes because he is so physical, and he eats by mouth and he has no tubes or crutches, and mostly does not use a wheelchair. Most of the kids we know with CP, they are more stereotypical. 
  
• Jake is an eight year old boy. He loves to climb and jump and explore and race around and feel the dirt between his toes. 
• Jake likes being in bare feet.

I had not actually prepared for weekly urgent care/hospital visits. I did not break any bones until I was 11 I think. By his age I had chipped a tooth,  and had stitches (once), but I'm pretty sure I didn't break anything until the roller skating incident. They used to have speed skate/a race at least once during each skate night. I was pretty fast, but not that fast, and was especially not in the winner category when I tripped over my own slates and landed on my right wrist. I also broke my left wrist falling off of someone's back in a game of horse (now who the hell was I ever smaller than? Perhaps that's why I fell?), and the third break, on my right arm again was from? I have no idea. I just remember that I had a wrist brace on both arms for three days during a period of time when one was healing and the other had been fractured.

Anywhoooo. I guess I forgot that Jake would get injured from normal playing too. I read a lot. I played some sports and rode my bike, but for the most part, Jake's play life is much more physical than mine ever was. I am trying to find a balance between keeping him safe and keeping him from being bored. 

Jake's bus is coming soon. I must swill my coffee and head back home to pick him up from the bus. It's been a nice little vortex here, full of time, no children,  many business conversations going on around me. I am well caffeinated now, and thus fortified against what this afternoon may bring. Hopefully no injuries. These co-pays are killing me.

Love Notes

New Story posted on Can I Sit With You? Love Notes by Tanya Foubert.

One girl's foray into shop class, and the inevitable gender bias that greets her.

Just not That Funny

So I can't remember where I was, perhaps it was the CBS 5 Blogger Mixer? (which was great by the way) and someone told me I was funny. And then they asked, "Is your blog funny?" and as I contemplated a witty answer, my dear friend Squid volunteered

"No. It's about her life." And then the conversation moved on.

Yeah. It's about my life, which lately is just not that funny. I mean I can make most things sort of sound funny...

like this one, ready?

Beware of Safeway meatloaf, it nearly killed me. It was so tough I almost took off my left index finger a few weeks ago and had to go to the local emergency room to get four stitches to staunch the bleeding. The wait wasn't very long. I asked them to triage me last so I could actually get a nap. As I see it that visit will end up being 40 bucks a stitch and $200 an hour for a bed to nap in.

What really happened?
Jake was so upset, as he has been for weeks and weeks and weeks now that I was hurrying and watching him thrash at the counter with his aide and I stopped looking at what I was cutting and sliced my finger. It bled through a kitchen towel and I still finished making his dinner so I could feel comfortable that I was leaving the aide with as little else to manage as possible. At the hospital I fell asleep on the gurney so hard that they were a little worried about me, as it seems they would leave the room for 20 seconds and I would fall sound asleep before they returned.

and then here's another good funny story:
My younger brother Gerard came up for the weekend. He arrived just in time on Thursday to go out for drinks with all of my mama friends from SEPTAR, scaring them with his amazing white teeth and strong beach body builder physique. On Friday night we decided to eat dinner at home because Jake was having such a hard time. He yelled for me after he went to check on Jake who had gone to bed early. I ran down the stairs only to find my brother with blood all over his hands and when Jake slid a bit to the side, trying to wriggle away from Gerard, blood all over the floor. Dude.. welcome to my home.

okay I can't even make that story funny.

After we put Jake to bed he continued to thrash about. I gave him the max on the benzodiazepine that was recently prescribed by the Psychiatrist. Apparently, this stronger and "smoother" drug takes more time to kick in and more time to wear off, than the other one we had used sporadically to control extremely out-of-control, dangerous, thrashing. We kept checking on him, but Gerard was the one who found him covered in blood, coming from an unidentified head wound.

Head wounds bleed a lot, and after carrying Jake upstairs and putting him in his 5 point car seat in the car, which the only place we can truly hold him down without hurting ourselves, we cleaned up the wound and decided not to go to the ER. Staples that would probably get pulled out by Jake would inevitably be harder to deal with than waiting until the swelling in the little know went down and the 1cm would closed up. It wasn't long before the bleeding stopped, but it was several more hours until we felt comfortable that Jake wasn't going to bash his head into another wall downstairs, so he sat in the living room with us, belted into his thank-God-we-have-this wheelchair. It was awesome. Jake's car seat still has Descartes' shirt over it covered in dried blood.(which Descartes stripped on and held against Jake's head as soon as he saw the blood.. God I love that man who knows how to react...)


okay so you can see...not that funny.

I also have an injured shoulder from Jake ripping my arm out of the socket (practically) which, while it is healing, and I am going to PT, makes me incapable of doing many household tasks well or at all... and my house was not looking good to begin with. And then I had an IEP for Jake, which led to the need to have another one (those went very well, just took a long time).

And I had a really emotional day after getting Jake into Camp. You would think that it would just make me happy, but it is a really bad process to sign kids up for 1:1 aides. I know I must be first my son's advocate, but it makes me cry (while driving friends on the highway in my Not-so-mini van at 75mph.. not good)

and did I tell you about the 2 inch nail Jake stepped on last week? I don't think I did. Went into and back out of his foot. His high pain tolerance meant that he did it while I was 12 feet away from him, and did not know expect for a strange drawing-in of breath that he took loudly. It was an odd enough sound that I watched him for a minute noticed a slight limo and asked Descartes to check out his foot as he passed by. He just scooped Jake up and said we are going to the hospital. I called Sage and she came for Lucy without waiting for me to tell her why I needed last-minute babysitting. The ER was great. They "got" Jake, and didn't insist on numbing his foot all up with a bunch of needles before we took out the nail. It came out as it had gone in quickly. Jake only cried when they washed his foot, and I am guessing it is only because we held him too still. We were able to spend the entire next day focused on Jake because Squid took Lucy home with her to play with Mali.

I haven't been laughing a lot lately.

I am okay. Good things have been happening too. I know they have. We decided on the list of contributors for the next Can I Sit With You? book due out in November. Jake continues to say more words at school-- "No! Applesauce!" when offered yogurt. Lucy is starting to sleep a little better. My closet is clean. I have amazing friends who jump at the chance to help us. We went to the new California Academy of Sciences which the kids loved.

Those things aren't funny either, but it is my life.

This is all just one part of my life, which will pass. Hopefully I am in a learning phase right now so that the next part is really really easy, and less physically painful, and funny. Maybe it will be funny.

Another Embarrasing Story to Help Children...

this one is all mine http://www.canisitwithyou.org

"Lena" and I were best friends in fourth and fifth grade. We even had boyfriends who were best friends. She came all the way from the other side of town to come to the GATE classes at our school. We went to different middle schools and pretty much lost contact some time during those junior high years.

She was a US champion surfer, which I suppose, is something that happens when you grow up in Southern California, you know movie stars and champion surfers. I also know she went to UCI (probably even took a class from my dad!)and I think she got a degree in Chemistry. I am fairly certain she is a pediatrician now.

now I sound like a stalker....

Coolness

We had our reading at Book Passage yesterday for Can I Sit With You? (www.canisitwithyou.org).

It was really pretty neat to present our book in the same little nook of Book Passage that hosts celebrities like Anne Lamott, Salman Rushdie, Lewis Black, Carl Hiaasen, Henry Winkler, Barbara Walters, Mario Batali, Brian Copeland, Maria Shriver, Alexander McCall Smith, Leah Garchik, Isabel Allende, John Gray, Amy Tan.. not all of these people are my favorite authors, but they are names most people recognize.. and I stood at the same little podium and talked with Shannon about our book, the impact I hope we are making, and how we managed to do it all for very little money, all the while adding to the coffers of our Special Ed. PTA SEPTAR (www.septar.org)

You know we are doing a second book. We are still accepting submissions until the end of the month. If you have a story that you would like to tell but aren't sure you can write it yourself I would be happy to ghost write it for you. Just send me an email and I will help. We can even use a pseudonym if you don't want your name associated with the story but you think it should be told. C'mon write a story send it to ciswysubmissions@gmail.com it will make you feel better to get it off your chest.

Thanks for all of your support.

Super Geek!

I just reformatted my computer. It's really not hard. Ijust popped in a disk after sorting through hundred and hundred of files.

In fact it was sort of like organizing a bunch of paper, setting half of them on fire then pulling out a new notebook.

My computer is no longer singing that high-pitched sad whine...perhaps I can rejoin the wired world.

We are back from Seattle and the show was fantastic! Sage was HIL-LARRY-US. I love to hear my husband laugh like that. More when am not so cranky because it was much too wonderful a weekend to spoil with computer drama.

We have a reading next week at Angelica's Bistro downtown, so make your reservations.

Wednesday May 7th 7:30pm
Angelica's Bistro
863 Main Street, Redwood City, CA 94063
Tel. 650.365.3226

Wow! Watch Out Seattle

So you know we have a show in Seattle for Can I Sit With You? a book reading.. and now NPR is officially going to cover it. This is so exciting.. for nerds like me (a nerd with out a PhD in something), being mentioned even by proxy on NPR is tantamount to having a paper published in a scholarly journal, and since I know that's probably never going to happen, NPR is the next best thing for me. I mean I just thought about that this very moment, but I am pretty sure that's what I think.

So if you know anyone in Seattle, know anyone who likes Seattle, know anyone with a lot of frequent flyer miles and is bored..send them our way.

tickets on sale now http://www.brownpapertickets.com/event/30612

Friday, April 25, 2008 8:00pm
Annex Theatre
1122 E. Pike St.
Seattle, WA 98122
(206) 728-0933

Scheduled performers:

SJ Alexander lives in Seattle, avidly follows the doings of Britney Jean Spears, and is a Kennedy Administration buff. SJ writes almost daily at "I, Asshole" online.

Els Kushner is a librarian and writer who lives in the Pacific Northwest with her spouse, their daughter, and far too many books. Her website, Book Book Book, is at www.bookbk.blogspot.com.

Liz Henry lives in many intersecting communities, as a feminist, poet, translator, blogger, science fiction fan, queer & genderqueer writer, and computer geek. She's had work published in Parthenon West, Xantippe, Lodestar Quarterly, Poetry Flash, Two Lines, Cipactli, caesura, other, Literary Mama, Strange Horizons, and has been publishing zines and little books since 1986.

Sarah M. Glover is a recovering C.P.A. who lives and writes in San Francisco. She is currently using her young children as guinea pigs while manically scribbling away about ghosts and fairies. Hopefully, the scribbling will make it into a book before they leave for college.

Michael Procopio lives in San Francisco, but has yet to figure out the precise name of his neighborhood. He is a food blogger who dislikes the word "blogger" almost as much as he does the words "moist," "classy," and "slacks." His likes include the drawings of Edward Gorey, Cotswold cheese, and the musical stylings of Jacques Brel. His websites are www.word-eater.blogspot.com, and www.kqed.org/weblog/food.

Jason Kovacs is a native of the I-5 corridor whose writing has appeared in Cranky Literary Journal, ZYZZYVA, and Jeopardy Magazine (you could go find all that stuff and read it, except it is all published under Jasons old name and Kovacs is his shiny new name). Jason does not like cilantro, and does not understand people who do.

Judy McCrary Koeppen lives with her family in the San Francisco Bay Area. She works as a speech language pathologist specializing in early intervention. When not being paid to hang out with really great kids, she chases her own two children and cares for her family's ever-increasing number of pets.

Cindy Emch is a highway poet. She can be found writing reams of valentines and love letters to her adventures on a daily basis. She calls them poems. Her words are salty and crunchy like sweat and gravel, and they tell queer mossy secrets. Cindys work has been been published in Lodestar Quarterly, There Journal, Its So You: 35 Women on Fashion, Beauty, and Personal Style (edited by Michelle Tea), and numerous chapbooks. She co-hosted The Aunty Cindy and Unka Lynnee Show with Lynn Breedlove on Pirate Cat Radio from 2004 to 2007, and has been a curator for the National Queer Arts Festival since 1995. Emch is the founder and co-host of San Franciscos twice-a-month Queer Open Mic, which features queer folks of all colors, cultures, and creeds performing their awesome lit to encourage the building of bridges between art, community, and revolution.

Sarah Dopp is a San Francisco-based writer and tech geek. She co-founded TheWrit.org, an online writing workshop and publication which has survived in a state of anarchy for almost five years. She's also the editor of Genderfork.com, a blog that explores androgyny and gender variance through artistic photography. Sarah was a member of the 2003 New Hampshire Poetry Slam Team, and likes to think of herself as a "recovering slam poet." You can learn more about Sarah and read her blog at SarahDopp.com.

Special thanks to Annex Theatre (http://www.annextheatre.org/) for donating their space to this event. "Annex Theatre is dedicated to creating bold new work in an environment of improbability, resourcefulness and risk ..."

Queer Open Mic Night BE THERE!

It's been listed everywhere. I'll be there with my sister. I'll be the one drinking a lot of beer.

Queer Open Mic
1/25/08
8pm
$1 - $5
at Vince and Pete's Three Dollar Bill Cafe
1800 Market St, SF

Queer Open Mic hosts Cindy Emch and Mollena Williams are hopping mad excited to be rocking out January with readers from the Can I Sit With You Project including Sarah Glover, Liz Henry, Michael Procopio and touring contributor SJ Alexander. This important book co-edited by special needs parents Shannon Des Roches Rosa and Jennifer Byde Myers is a collection of stories about schoolyard social experiences, both good and bad. All proceeds from the the event and from the sale of Can I Sit With You? go directly to SEPTAR, the fledgling Special Education PTA of Redwood City (www.septar.org).


Queer Open Mic is a twice monthly gathering of poets, performers, writers and artists of all types to come together and share art. Proto-feminist and genderqueer in scope, QOM aims to combine raunchy enthusiasm, warmth and community, unapologetic queer, radical politics and sweet rhythms to create a space for spoken word, poetry and performance that is multi cultural, multi gendered, completely inclusive and dynamic. QOM is hosted by Cindy Emch and Mollena Williams. Please show up around 7:30pm to sign up on the open mic list. You're encouraged to read one piece of work that is five minutes or less. And by encouraged we mean threatened with spankings, shoe throwings and general hilarious tantrums if you don't follow the rules.

About the Performers:
Liz Henry lives in many intersecting communities, as a feminist, poet, translator, blogger, science fiction fan, queer & genderqueer writer, and computer geek. She's had work published in Parthenon West, Xantippe, Lodestar Quarterly, Poetry Flash, Two Lines, Cipactli, caesura, other, Literary Mama, Strange Horizons, and has been publishing zines and little books since 1986.

SJ Alexander lives in Seattle, avidly follows the doings of Britney Jean Spears, and is a Kennedy Administration buff. SJ writes almost daily at "I, Asshole" online.

Sarah M. Glover is a recovering C.P.A. who lives and writes in San Francisco. She is currently using her young children as guinea pigs while manically scribbling away about ghosts and fairies. Hopefully, the scribbling will make it into a book before they leave for college.


Michael Procopio lives in San Francisco, but has yet to figure out the precise name of his neighborhood. He is a food blogger who dislikes the word "blogger" almost as much as he does the words "moist," "classy," and "slacks." His likes include the drawings of Edward Gorey, Cotswold cheese, and the musical stylings of Jacques Brel. His websites are www.word-eater.blogspot.com, and www.kqed.org/weblog/food .

Blooking Central | Cheryl Hagedorn

Cheryl Hagedorn contacted us a few weeks back and asked us about our process of making the Can I Sit With You? blog into a book. Here is a link to the 'interview'.

Have you submitted your story? ciswysubmissions@gmail.com

Wow. Can I Sit With You?

Beth Kanter has just listed Can I Sit With You? on a list of "nonprofit organizations or causes that BlogHer readers may consider making a donation to as part of their year-end giving." Uhm wow.

I am actually going to the BlogHer social meet up thingy on Thursday evening.

Now What?

I am so glad we already had that neurology appointment set up for today.

Jake fell asleep at school. at the lunch table. during lunch.

He has not taken a nap that was not induced by anesthesia for nearly three years..maybe longer. Not only did he fall asleep, but Anna, his aide, was able to carry him all the way back to the classroom (wow! she's strong!) without him waking up.

There is a possibility that Jake had a seizure. Great! We've never had those before. I am so, so exhausted.

****************

In other news...please, buy a copy of Can I Sit With You?


****************

and also.. Jake's afternoon aide? Yesh, she will be going back to school next semester. So we are now looking for new afternoon help starting in January. Fantastic!

am feeling rather blue about Jake right now. His teacher, aide and Cookie (Descartes' mom ) all noticed his right foot "being favored" I finally saw it today.. when I really looked. He is not favoring his leg.

His foot is actually dropping and dragging. His right foot. is dragging and turned in.

is it nerve damage? from a fall in the back yard or some other time? He had a lump below his kneecap the size of a golf ball a while ago...

is it something worse, like a de-myelinating disorder?

do we need to get another MRI?

is he in pain?

my poor boy.

just now, I almost thought "poor me", or "why me?" I just want to celebrate our book right now.. I want to have that feeling like things are on track. I really hardly ever, nearest to never do that poor me crap.. because if it has to be someone.. I would NEVER wish this on someone else, so "why not me?" is where my mind rests.

Final Copy for the First Edition! Gulp!

Looks like Shan and I are going to let it go and start promoting this book.

Can I Sit With You?

I have a hard copy next to me and it is making me a bit giddy and a bit shy and a lot tired, knowing that the work of selling it will probably be more than the work of making it.

I'm Pretty Sure We Just published a Book

and Squid and I are currently celebrating the moment by....

me:taking a shower, then going to bed

Squid:folding laundry, packing, then hopefully going to bed


more self-promotion when tomorrow is really here and not just 1:20am

Can it Get Any Cooler?

Talk about someone I'd like to sit with!

deviantArt has featured Lea Hernandez!


The cover artwork for Can I Sit With You? has been named one of today's Daily Deviations at deviantART.com!

Congratulations Lea..and thank you for your amazing contribution to our book!

Holy Wow!

Have you even been over to Can I Sit With You?

Lea Hernandez has just completed the cover for our book. This is very exciting. If I get on this and help Squid we will actually complete this project and get this book published!

I have been a huge flake.. okay actually my computers are all infected and crashing and making me extremely frustrated, but it makes me feel flaky when I am not doing more than everyone else.

Yeah, you read that right. I must do more than everyone else or I am a flake. Kind of hard to do when you have very capable friends.

5.6 Earthquake!

We just had an earthquake a bit ago and what do you know, our first response, after determining that we didn't need to go save any children, was to go to the usgs.gov and check out its stats! Nerd Alert!

If you felt it please log in your details... helps the USGS make better shake maps.

oh and go visit Can I Sit With You? while you are at it!

The Sex Change of Zyax II

You have got to go read Liz Henry's story on Can I Sit With You? She is always an interesting read due to the ginormousness of her thoughts, and her ability to speak about them. If you haven't been going over at CISWY. get there right now and read what you have missed this past week or so. The stories are really rather amazing. It surprises me what we have all been through... what we do and say to each other throughout this life.

Hey Lookie!

Our little Can I Sit With You? is so cool they linked to us at Tolerance.org!

Don't forget to submit your story! ciswysubmissions@gmail.com

Sorry Charlie

So I published my little story on Can I Sit With You? I think it may be the only thing on the web with my real name attached to it. I'm not really hiding anything, but I like being jennyalice here. She is much more willing to admit her faults and share her experiences.

Have you sent in your story? C'mon, get on it!

email to ciswysubmissions@gmail.com