Vacation - Red Couch Picture

The group picture that China travel groups try to get is taken on a red couch at the White Swan Hotel.  Scream babies.  Crying babies.  Babies falling asleep or unable to to sit up.  Then there were the crawling babies.  Getting that shot was nigh on close to impossible.  The pictures have gotten better every year and this year there are numerous group shots to choose from.

And many, many out takes.  Here was my favorite.

Vacation - China Sisters Reunion

We spent the weekend at Indiana Dunes.  The beach was wonderful - a lake so great that there were little waves and an undertow.  And the kids had a great time.

One of our families brought matching dresses for the little girls and a coordinated dress for Julia and the other bigger girls.  Too cute.

This is all of us, after swimming and dinner.  We clean up rather well.

On Saturday night, right before bed, Julia went up to Tracy and crawled on her lap and gave her a big hug.  Sweet, wonderful and unexpected.

Sunday morning breakfast with the kids all on one end.  I think that Julia cut her pancakes.  Whatever she did, she ate her whole breakfast and then had fun with kids.

Julia and Petra getting ready for that red couch picture.

One of the best treats of this reunion was the pillow pets that Petra's family gave to each of the girls.  They found a dino-pillow pet for Julia.  He was christened Duffy and he has been a fixture on any bed she has slept on.

I have a load of things to write about, a s*$%t load of stuff to talk about, but first, oh, do I miss David today.  Lately, I have been thinking about all the ways that we were not perfect for each other, how we may have hindered instead of helped each other, how we could have been better, more supportive, more loving, more intuitive.  How we had such potential and how we fell short for each other.  Then, I had a bounce back and was very sentimentally lost in how lovely it was to have a true love for years and years and changes and changes.  But today, especially after my first LEND meeting for facilitators, I miss the ability to just dump out my day for him.  I miss the specific way that we were together.  David was always the guy who when you ask how any experience was  -- work, a party, a trip -- the answer was “fine.”  To get more, I’d have to probe and question.  I had to learn patience in order to deal with his brand of a thoughtful person.

Me.  I was/am completely different.  To me, true love meant never having to shut up!  I’d walk in the door ready to talk about every aspect of my day -- the joys and the sorrows, what I had for lunch and what the Supreme Court wrote, and what I thought, thought, thought.  David had much more information on me than I ever had on him.  His comments were well chosen and considered, mine were like cleaning out a backpack after a long vacation.  

And oh my god, do I miss that.

Some of this feeling is post-vacation.  Spending the week with Lisa who has always been my excellent sounding board.  Spoiled by having a week of deep talking with her.  And I have been indulged by other friends and by Cheshire who let me go on and on regularly, but none of that is like having a live-in listener.  

Sometimes I am very aware that I engage someone in conversation longer than they want, or someone like Julia’s therapists who don’t need to know what I want to tell them.  I am not totally inappropriate but I can hear in my conversations the desperate longings of a lonely person.  It is part of this new normal to remember to monitor interactions, make sure they are appropriate and timely, and keep conversations on track.  Not always easy for such a one as me.  Of course, there is glory even in this acknowledgement.  As I kid, I was painfully shy and such a severe stutterer.  So much of the time I said so little to anyone.  If shyness and stuttering were my afflictions, I have certainly recovered.  Remarkably cured?

So, now on to the content.  We have been busy this week and I have been grumpy as well.  It was hard to come down from vacation.  Why is it that I always feel so on top of things on vacation?  My balls are all in the air and I am doing a marvelous job juggling!  But then, I get home and those balls are bouncing all over the street!  My task list is as long as my arm and I have the cold, dark feeling that I have indeed taken on this next school year much more than I can chew.  I am sure I will not finish those remaining fallow year projects before the LEND year begins and finishing the old before beginning the new is of utmost importance.  

It was Thursday, yesterday, before I let go of all of that.  I breathed, made a nice supper for Julia and myself, played some wii dance games, read some Harry Potter, and fell asleep over my first LEND reading of the semester.  

I only need to know what to do with the balls in my hands.  Those balls in the air will come down at just the right time.  I can trust gravity.

And trust that following my heart is exactly where I should be as well.

Now on to content?

Julia and I went shopping.  Underwear and shoes.  We have been talking about growing up and changing for the whole summer.  I have worn Julia down.  She no longer says that she doesn’t want to grow up.  I have assured her over and over that she can live with me forever (a real concern of hers) and that if she grows so tall that her head touches the ceiling that we will move to an appropriately tall house.  Yes, I was being very careful about discussing body development and menstruation and she was worried about height.  With all that assurance, on Thursday we headed for Macy’s to buy bras for her.  

Julia has been developing this summer and in the last weeks she has said that shirts make her uncomfortable, but she was scared to death that I was going to buy her “big bras” and she didn’t want them!!!  The woman in the bra department was an angel.  She could not help us because the trainer bras and smallest cups were in the kids department, but she told Julia that they make bras that would fit her perfectly.  Julia was being her less than completely appropriate self, expressing way more of her feeling than the typical 11 year old expresses, and this woman answered every question more than once in a calm and lovely voice.  I do get more than typically nervous with Julia in a situation like this one.  I want to her interact with other people and I also want to completely protect her from less than positive responses.  This woman could have been a therapist!  Or maybe someone who knows and understands autism.  Or maybe just an angel sent by a micromanaging god.  There is always that possibility.

We got to the kids department and we found the kid bras and we picked out some to try on.  There was no one there to help us but then, maybe there was no one there to bother us as Julia tried on bra after bra first, for size and then, for style.  We had to go to a second store because there was just not enough in her size in Macy’s.  Julia had no problem with any of the shopping.

Talk about relief!!  My shoulder dropped.

But then, we went to our favorite shoe store.  There is a story behind needing to buy shoes immediately.  Anyone who knows me knows that I am shopping challenged.  I was getting anxious in Macy’s passing women’s clothes and thinking that I was really going to have to buy a few things for school.  I have been living in jeans and black tee shirts for two years and I need to go up a notch, just a notch, for my Waisman days.  (Not to mention that those particular black tee shirts look like I should only wear them around the house now).  So, I was not crazy about extending our shopping once we found the requisite number of bras, but during the last day of girls’ club at Chautauqua, Julia’s shoes were taken by another girl.  They were changing after swimming and some other kid had the same sneakers as Julia did.  Just a size smaller.  We had no idea who took them and no way to find out on Friday evening.  And so, Julia needed something immediately when we got home.

So, I waited until Thursday to shop.  

The nice guy at the shoe store measured her feet.  She is now between a 4.5 and a 5.  We went to the aisle that we usually shop in and Julia started looking at the Sketchers.  She loves those fancy shoes, and especially because there is so little that she cares to pick, I indulge her preference.  Lights and sequins and hearts and beading -- I let her buy the gaudiest pair on the shelves.  She loves them. I love them.

But no more.

Gaudy kid shoes including Sketchers stop at size 4.  There may be a few 4.5’s but Julia really needed a 5 and that is a women’s size.  

So here I thought that we might have a tough shopping experience with underwear and we had it because of shoes!  We had to have a discussion, which was fine.  A bit sad.  Giving up gaudy shoes was not easy.  I felt a bit blindsided.  Julia felt cheated.

So, we bought a very brightly color pair of sneakers and she is really fine with them today.  I talked to some friends who had all sorts of suggestions and we will find or make some gaudy shoes to satisfy her longing, but really, that was a lot of growing up to do in one day.

We also visited her classroom after a last minute call from her teacher, Beth.  Beth and the new special ed teacher and the teacher who shares students with Beth were setting up their rooms and thought that it would be great to see Julia.  It was a good idea and I hurried over to school.  Julia interacted some with Beth but did not even greet the other two teachers.  She spent her time checking out the cleaned out classroom, every nook and corner.  This is not exceptional or surprising behavior on Julia’s part.  It reminded me so much of her hyper vigilant days when checking out the environment instead of focusing on people was the way she spent her day, every day.  But what was surprising was that when we wrote in her journal that night, she wrote that she was unable to say Hi to the other teachers, that she was shy and was a little bit nervous (which means that she was very nervous).  Julia was able to observe and reflect on her feelings in a way she has never done before.  This comes after months of working on identifying her feelings and learning appropriate reactions -- like, identifying her anger and then saying that she was sorry.  These observations were not prompted at all.  She identified and she felt the need to write it down as well.  

Another step for her.

Today, I went to a first LEND meeting for people who will facilitate one of the instructional modules.  All those feeling of overwhelm flooded back in.  There are three second year LEND trainees who are paired with regular faculty but the other two are grad students who have spent plenty of time in clinics.  Those feelings that I am crazy for engaging in this process were front and center.  Why?  What possessed me?  I still know nothing!  The high waves of self doubt washed over me.  I could have drowned right then and there.  But no one spoke to me as if I was an idiot!  They all assume that I can do it!  Hell, these university professionals are sure that I will fit in just fine.  And right now, scared out of my wits, I have to trust them.  I have to believe that they see ability and potential.  I have to believe them more than I believe my demons who want me to crawl into some hole.  I need to harness they belief to my passion.  At least until my own belief comes in.

And writing this, I almost believe that I can do that.

Yesterday, first day back after vacation felt like utter chaos.  Too many chores and tasks on the list to get done.  All seeming to need immediate attention although most had no emergency status at all.  Just my own need for post-vacation order.  The list of household fixes that I left Ed with remain in medias res -- I just hated a few of the new lights that I had picked out and bought.  And just noticing too many things undone -- the garden, the list of fallow year chores to complete asap before the fall begins.  Generally grumpy and dissatisfied.  Allowing myself to be disappointed that my gardens are overgrown and ugly and that I’ve enjoyed little time in them.  The inside of the house has a tasks in every corner.  Waiting.  Just waiting.  

But made a list and checked off a few tasks during the day.  Spent some time writing email to a few people long due to be written to.  Organized Julia’s work for the week and just let the dust settle.  

We are home.   Looking forward to a day of tasks and maybe a swim if it is warm enough in the afternoon.  That patience in the small and the single step is a soft blanket thrown over the shoulders of dissatisfaction.  New morning eyes that know that everything that needs to be done must be done or delegated by me and that I certainly have limitations of time, interest, and abilities.  Then again, there is my need to waste a bit of time.

Just a Tuesday morning.

Julia continues to work at reading Harry Potter.  Asking her questions last night as we read.  She remembers many more facts.  Inference is still very hard but she seems to follow the logic of inference more consistently.  Addition is coming along.  I am hoping that our work on math facts will lead to next steps of double digit addition and subtraction and understand multiplication during the school year.  I type the last thought and erase it and type it again.  I know that I am expecting a lot.  Maybe the impossible.  But I do and I will continue to.  My job is not to be satisfied and complacent.  At least, I do not judge it to be.  At least, not yet.  

"Like all explorers, we are drawn to discover what's out there without knowing yet if we have the courage to face it." ~~Pema Chodron

Is that my life or what?!

Last full day at Chautauqua.  Really felt totally settled in yesterday, but very content to have the experience on whatever terms it comes.  The morning lectures have been spotty this year for me, but yesterday, with Erroll B. Davis, Superintendent of the Atlanta Public Schools, spoke.  Considering the theme of the week was cheating, he was an incredible speaker.  Of course, I have the feeling that he is one of those people who could make a rendition of the phone book interesting.  The afternoon lecture was Sayyid M. Syeed, National Director of the Islamic Society of North America.  Again, a strong, compelling speaker who had thought provoking things to say.  Then there was the symphony last night playing George Gershwin’s Piano Concerto in F and Beethoven’s Symphony in E-flat Major, the Eroica- conducted by Mei-Ann Chen with Ian Parker as soloist for the Gershwin.  Chen is described as a dynamic young conductor -- an understatement to say the least.  She was a joy to watch and she danced her orchestra through each piece.  This was a long concert -- 2.5 hours and Julia sat through the entire thing, relatively quiet until the very end.  Beethoven’s never seem to end!  There was a moment during a quiet movement of the Beethoven when the orchestra was accompanied by the swish of a steady downpour of rain.  We were all dry in the amphitheater with just the sound an the smell of fresh rain-air wafting through the open hall.  It reminded me how much I have been music-less during the last two years, and how much I want to listen to music that I have chosen.  Not to deny all that has come before, not at all, but to be the background and at times, the focus of this new life.

And that is what I continue to feel.  New Life!  Not that I have stopped thinking of David or miss him less -- maybe more in a less grief-stricken way -- but I am feeling like the infusion of life that I first felt on the eve of the second anniversary can now be trusted to be the norm and not a pleasant aberration.  

Julia has had a good time too.  She and her aide, Lizzy, have gone to Girls’ Club every morning and afternoon.  She gave Lizzy a hard time yesterday and hit her, but apologized afterwards.  No where near the behavior of a few years ago, but not to be tolerated or accepted.  Other than that, Julia has been friendly, more than ever, with her fellow campers, and they have grown to like her as well.  One day, Julia was reluctant to get into the lake to swim and her colleagues encouraged her.  Julia, loving that sort of attention from her peers, jumped in!  She is remembering a few names and wrote a very sweet friendship note to one little girl named Hillary.  During the lunch break yesterday (from noon to 2) we went to the little library on campus (can’t believe that it was Thursday of this week, our second trip here and we are just visiting the library!).  Julia headed straight for the kid’s section and finding a little boy there, took out a book and read him a story, explaining parts of the story that she thought he didn’t understand.  Possibly remarkable behavior for any typically developing 11 year old and a marvel for my girl.  

Julia is also enjoying having Lisa around.  There is no question that I am her mother but the attention of another dear adult is so good for her.  We have built a family -- far flung and with few blood ties, but strong and vibrant.

Which brings me right to Traci’s comment on the last entry.  First, correction, we have gotten together with our China travel group 6 times since we’ve been home.  Incredible that time has passed and that we make our getting together a priority year after year.

Traci said: “I think we did a terrible job the year that David died. Or, at least, I did. I'm so sorry about that. I think we were all lost on what to do or how to.....I guess just how to be. David was part of us and we miss him.”  People, usually the most dear, have said some version of that to me over and over.  At first, I had no words to ease their uncomfortable feelings.  Now, I understand so much more.  In one sense, we all did a terrible job right after David died with every encounter.  How could we not?  We were all reeling from an unexpected trauma.  We were all lost, without moorings, without compass.  Very recently, I realized that in our circles of loved ones, David was either the first or the first in a long time to die.  We had our AIDS deaths in the late 80’s and 90’s which wiped some of the soul out of our circle of friends, and we lost Barry in 2001, a loss that had us pull together and love hard.  Between and afterwards, we had life without such devastating loss.  We grew complacent and were sure that we were all safe from loss.  Not in our rational minds, not intellectually, of course, but in that more primitive part of our hearts and minds.  We would go on forever.  

All of this to say, that I am grateful for the dear family who gathered around me, and abided with me -- who visited or wrote, who talked about David or didn’t mention his name, who remembered in some physical way or who spent time thinking about him and us and our family changing.  I think of appropriate after-death behavior and I realize that those who are the best at it are those who have lost the most.  And so I wish the knowledge of best behavior on not one of my dear friends.

Now, time for this morning’s lecture!

Sitting in the main square cafe at Chautauqua with coffee, laptop, iPad, and the book that I promised myself that I would read for an hour today.  Julia was off at 8:45 to Girls’ Club with a very capable Lizzy as her aide.  Lisa off before that to teach her class.  I tidied up our room, washed dishes, made our bed, and headed out.  It is a cloudless blue skyed cool day with low humidity.  Quiet, with the rumblings of talk about the NY Times, last night’s concert and what someone was wearing.  And laughter.  An older man gets his wife coffee and a muffin while she thumbs through her Chautauqua Daily news and strains of a choir rehearsing  waft in the air.  Echoes of a sermon enthusiastically delivered in the amphitheater down the street.  To be here for a week is pretty much heaven.  To stay for the summer might be more wonderful than a simple soul could handle.  The topic is cheating this week and the two speakers I heard yesterday asked hard questions.  After a summer spent figuring out next week’s spelling words, keeping toys and the house orderly, and taxiing Julia to therapist appointment, a bit of brain exercise is most welcomed.  And of course, Lisa, to talk out the kinks in my heart and hers.  

Julia and I had a glorious weekend with the group we call China Sisters -- the group of families who traveled to Nanchung to get our girls.  This was our 5th reunion -- the little girls are 6 or so and Julia is 11.  Angela who organized this year toasted at Saturday’s dinner, saying how thankful she was for our group, for our willingness to be together, for what we share.  I wanted to, but did not, offer a toast of thanks for the love and support these people have offered me over the past two years.  There has been no demand on my energy to help get our reunions together since David died.  And there is never a time when we are together that I am not offered a hand with whatever is in my hands or Julia.  Never a time where I am short of hugs and kindness.  And when these people tell me how far Julia has come and comment on this behavior or that, I know that they know.  And I know that they share in her growing.  What a blessing from where blessings come from to be given such companions.

So many times I worry about not having what I need -- and to the extent that I need my partner, David, I know I cannot have him.  I can spiral down with that thought at times, but I can be rescued just remembering what is it that I have been given.  I can still summon up the feeling of amazement and wonder that I felt after David died.  That had everything that followed close on death’s heals had not been connected with losing David, that the time would have been so exciting.  I am still living in that wonder.  People, places, opportunities -- I have needed and what I needed has appeared.  Again, being so thankful for the blessing.

Smoothed Pebbles

I have wanted to revamp my blog for a long time -- move on a bit.  Maybe put things in useable categories.  Starting LEND again, I would like to write about my experience and separate it just a bit from my writing about Julia and my thoughts about healing and this new life of ours.  It has been on my task life for months, but I’ve been stuck on what to call it, how to format it.  Finally, last week I found a format that another blogger was using that I really liked.  Clean and easy on the eyes.  I’ve started to build it for myself, hoping that I can copy the elements that I like.  The issues of a name which you need in order to begin a Blogger blog surfaced and I had no idea.  I have been through with Spicy Dragons and Dinosaurs for a good chunk of time now.  That title has seen me though Julia’s tough days and David’s transplant and death.  It has seen me through the long dark tunnel of grieving and my first tentative steps towards some right livelihood.  It is a wonderful name but I want to begin with something fresh and unburdened.  I want to begin anew.

A few nights ago I wrote: “How lucky we were!  How fortunate to have loved so well, so completely.  Not perfectly, but then we were not about perfection, we were two rough edged stones smoothing each other’s edges.”  Smoothed Pebbles.  That is what Julia and I are.  Like rocks and stones whose rough edges have been worn away by water and sand, whose faces have been shined, and whose beauty is most apparent when they lay just under a thin layer of clear water.  Not water and sand but journeys that have brought us together.  Roads that hone the soul.   

This is how and where I want to begin again.  Recherchez. (Fr. second person plural present indicative to look for again).  Now, it is a task at hand.

Supper time.  Last one at home for a week.  Vacation begins tomorrow!

Julia’s iPad now has a cover -- big, heavy, and cumbersome over such a sweet, sleek, little machine, but safe.  Julia immediately took it over.  Now to get her taking pictures for a vacation photo journal.  

Julia used a simile for the first time today!  Butterflies around our Hibiscus Luna White.  Julia said that the the flower was sweet to the butterflies like candy.  Julia who has disagreed and fought with anyone who made any simile about her and didn’t understand any comparison between things or times or people.  My black and white child, made her first simile.

There will  be more.

Over the past few days, I’ve shifted books - to make room so that Ed could hang some lights - and pictures.  I caught sight of a few pictures of David and I, or David alone looking at the camera as I took his picture.  And in some of those pictures, it was clear to me that we felt so lucky to be together.  I’ve spent a few months being angry, feeling cheated, and also wondering if our partnership could have been better.  I could see how we held each other back, how we did not always allow each other to live up to our highest potential, how each of us compromised to own detriment.  I have felt ornery inside although I would have done anything to get back that imperfect union.  Noticing that look in those pictures brought back some sweetness.  How lucky we were!  How fortunate to have loved so well, so completely.  Not perfectly, but then we were not about perfection, we were two rough edged stones smoothing each other’s edges.  

I interviewed for an internship to do some policy work with a wonderful woman at Disability Rights Wisconsin.  It will be part of my LEND program for the year.  By the end of the interview, we had set up a date for when I begin.  The list of current projects on this woman’s white board was like a check list of issues that I want to understand.  She didn’t ask what I wanted to be doing in five years.  I hate that interview question.  Always have, mainly because I have never had any idea of what those interviewers wanted me to say.  And maybe because I have not forged my own way but tried to bend my way into something acceptable.  I told my interviewer twice that I didn’t know where this second year of LEND was leading me, that I had no specific goal set but that I was sure I was in the right place doing the right thing.  Later, it struck me that this was not fodder for an interviewer but true.  Right now, it is very simple.  Just do it.  Play out my heart and let it take me.  Live this day and then the next fully and without second guessing where I will arrive.

I feel some strength returning.  What a gift.

Written 1 August 2012

It is 8:17 and I’ve been at email, scheduling speech therapy for October 1, and changing my August dentist appointment.  We’ve had breakfast and are at the pool for a lesson for Julia.  When I stepped outside an hour ago, the air was still very cool and pleasant.  I quickly opened windows to catch some morning cool.  I even brought a light sweater to sit as she swam and worried that Julia would be cold in the water.  By 7:55, the cool is gone.  

It is Wednesday and we leave on Friday.  I have a list of to-dos before I am ready to leave but I am working through it.  Strangely, I find myself instinctively yearning for the overwhelm that I usually put myself in before any unusual event.  And I can’t muster it.  I’ve planned, scaled back my ambitions for the week, cut off the fallow year work for the most part, not even expecting myself to spend time in the garden.  I had some correspondence and forms to do and some prep work for Ed’s work while we are gone.  I even met with Chrissy who will be taking care of the cat and dog while we are 

Julia is giving MaryBeth a hard time.  I guess MaryBeth is not going to see the result of our practice during the past week.  Too bad.  I thought Julia had progressed some in her strokes in our practices this week and I wanted her to show off.  To the extent that I can take any ego gratification in what Julia does, she does not preform on cue.  Ever.  

Ed, my handiman and contractor, and a crew are next door repairing my neighbor’s chimney.  They have been at it since late last week and in the morning when Julia finished cleaning the cat box and puts the plastic bag of poop in the trash, she says hello to the “guys”.  She greets them very appropriately and spontaneously although her followup does not always make sense.  But the guys are usually busy and up high on a scaffold and Julia’s chatterings are only half heard.  They are cheerful and always respond to her.  And again, I am grateful.

Someone has posted on FaceBook, “There is always something to be grateful for.” When I saw that, I immediately took exception to that in my head, muttering and moaning but most days, most times, that is true.  

I am cooking a bit for Chautauqua so that we will have a few meals set and easy.  I ponder whether to bake another of the short cakes that I made for last Sunday’s Circle Supper (church planned get together).  It was so good and Julia loved it -- eating the last piece after supper last night and savoring every bite.  But if I make it, surely Lisa and I will eat it as well.  I debate the wisdom of providing dessert.  There is a great ice cream place on campus and we will undoubtedly have cones once or twice.  

More later.

After a swim on a summer evening

 

 

written 29 July 2012

Teary today.  Not bad.  Knowing that this will come and must be gone through.  Not wallowing but experiencing front and center.

It is grey, drizzily.  Julia and I have stayed inside most of the day.  Doing her work.  Found another way to teach “more and less” on line.  Exercises that are labeled a pre-K.  For a moment, I am defeated.  Julia still needs to work on skills that are considered pre-K.  We work with the number board, with a exercise on a web site, with cubes that can stick together, and with our white board.  Less = little = few = small.  More = big = many = large. We work slowly and I post a new motto:

I will tell you what I think.  I will tell you why.

Julia does a very good job at finding answers in the eyes and comments of her teachers.  It is hard not to say yes or no when she asks, is this right?  But she is guessing in some sense and will change the simplest answer with the slightest move or murmur of disapproval.

And so we work slowly, finding answers and reasons.  She still can’t tell me reasons for answers.  Why is seven more than four?  And she needs to know.  For a typically developing kid, I would take the right answer and expect that she understood the concept enough to just move on.  And if that kid didn’t really understand, she would grow to understand it as she moved on to more advanced topics.  No such learning with Julia.

Every summer, I have mapped out what Julia would learn and been disappointed by how far back I had to go to get her close to the simplest of goals.  This summer is different.  I need to reach back, and doing pre-K exercises can be depressing, but we chip away at what is hard.

I explained how her brain works, drawing a brain and labeling parts “number” and “words”.  I told her that there needed to be a path -- a synapse -- between those two and that with each day we worked on connecting more and less to numbers we made the path stronger and wider.  I told her that the path needed to be a superhighway and told her that the path between seeing words and understanding the words was like the superhighway, and just a summer or so ago, the path was grassy with little stones to mark it.  

We are reading Flat Stanley.  It is a bit simpler than she needs but it is a good book for questions about inference.  That or I am getting better finding ways to ask those questions.  We worked for a few hours, and now she is doing her “enormous” dot-to-dot book which in truth is nothing but counting practice.  

Oh, the work that this child needs to do.

And I appreciate so much our quiet companionship.

I dreamed last night about a house.  I think David was there, but it was no a dream about seeing him, it was about being in a house that was new to us.  It was a series of unconnected room with paths between doors and a neglected garden.  At one point, I noted to myself that it was time to start working on the garden -- pulling out old shrubs and making it my own.  There were children living nearby, maybe in some of the adjoining rooms.    I was comfortable with them and they were not mine.  I felt ready to start the process of making it mine.

So, teary.  At church, there was a condensed version of Doubt today and the music was Satie’s Gymnopedies.  Theater and Satie music!  Too many reminders of too much of our life.  Afterwards there was no one to be brutally honest with and offer real opinions.  And at some point it struck me that David’s Pieces in the Form of Satie -- a lovely piece of theater that was roundly panned when it was done in NYC -- should have been done by one person.  An actor who could play the music.  Suddenly excited, I wanted to mount that production.  I know, knew in that moment, that I could make it marvelous.

I have had days of such strength over the past weeks.  I am grateful.  I am feeling myself come back to myself.  Today, a grey day, with theater and music, I slipped back to the sadness.  Today it was not debilitating sadness.  Such a much more normal sadness.  

Nine days before vacation and I’ve loaded myself with work on the house to get ready for a bit more renovation.  Nothing new in a sense but finishing up last year’s bits and pieces -- new lights for living and dining room, a new mail box, fixing a slow leak in the porch ceiling, repairing, refinishing and updating my front and back door (yeah, working storm doors!!), deck repairs (which unfortunately will be all too visible with planks of wood not matching when it is fixed).  In this house where nothing is modern standard, everything is custom or  renewed.  Once again, I will go away on vacation and a bunch of tasks will get done.  We will come home once again to a house transformed, albeit on a much smaller scale this time.  

I am also back to the physical fallow year work -- basement, yard sale, and eventually family chrono file and pictures -- that I would like to finish before school begins, but with my foot healing and a needy garden and the summer pool I know that much of it won’t get touched until the weather turns.  I’ve also decided to clean my desk -- if it is still under the piles of papers, books, and Julia leavings.  Right now, it is unusable for anything but a pile collector.  I can’t find anything!  And I know there are things that I wanted to consult with this summer in those piles.  Even my mail basket which I attend to regularly because that’s where I keep the bills to be paid, is becoming inundated.

Feeling a bit overwhelmed at what I would like to get done in nine days, but not so much that I can’t take the deep breath and plunge.

I do believe that this is rather normal resilience and energy.  The stream of energy goes on, although I do not take any of it for granted.  I may never take it for granted again.

Julia and I have been touching on many sensitive and tough issues these days.  The other day laying in bed in the morning we talked about growing up, getting breasts, pubic hair and periods.  Sorry to those who don’t want to know this much.  Julia has always been dead set against growing up but her body is beginning to deceive her.  She is growing up and will need some sort of training bra in the fall.  She is not, however, the same little girl who would throw a tantrum when I (or anyone else) suggested would grow up -- and that was only when people would ask, “what do you want to be . . . “  She denied it for awhile this time but I insisted and she began to listen.  When it was her turn to question me, she asked what would happen if she grew so tall that her head hit the ceiling.  I told her that if that happened, and I didn’t think it would, that we would move to a house that fit her.  We’ve talked about that -- a house that fits her -- a few times since that morning.  I know she is a concrete kid and metaphors usually over her head, but this assurance that we will be together and be in a place just right seems to have made growing up more bearable.  

Yesterday, we talked about autism for the first time ever.  Julia is beginning to notice that she is different from other kids.  She knows that she does not know what the other kids in school know.  She knows that she has to work very hard to master things like math facts.  Now, much of the time she doesn’t care.  And she loves the therapists who work with her and considers them her friends, but yesterday we sat on the couch and talked about her working hard.  I told her that her brain works differently than most people.  I told her that she has a wonderful brain but that she needs to be able to go to school and live in a world with people who are not like her.  I told her the way that her brain works is called autism.  I paused before I gave her this information -- all the conversations and ponderings of disability vs difference flooded my brain.  She said she had heard the word but it never meant anything to her.  I told her that it was not an excuse for not working hard or not trying her hardest.  I told her I expected her to be the great person that I could see inside of her.  Will she remember the tears in my eyes?  Will she remember my faith in her?  Will she remember even the word?  Maybe not, but the conversation has begun.

We continue to read Happy Potter, book 1.  I am enjoying savoring the details that I had forgotten and maybe had even skimmed over to get to the adventure.  We talk about everything about it.  I am not saying that comprehension has grown by leaps and bounds, but Julia wants to understand the story and it will be her curiosity that grows her ability to understand.

It is always difficult scheduling OT and speech therapy with all of the other therapy Julia receives.  Because it is a high-demand clinic, there are no set appointments.  Instead there is a “process” of making appointments two months ahead, a process that discourages all but the anal and desperate.  And I’ve wondered whether to just give up the therapy until we are finished with intensive -- so for a year.  But then, we have a great therapy session or one of her therapists says something incredible and I am determined to keep it going.  

That happened on Monday in speech.  Her speech therapist commented on our -- Julia and my - conversation and how they have changed and what I could do to move them to the next level.  And wow!  This woman hears us talking for moments before and after sessions, and she was spot on!  She said I have been accommodating and should now move Julia to accommodate me -- slowly of course, but to consciously begin the shift to a more equal conversation.  Just the idea of a real conversation with Julia is enough to make me sing.  Just the care and attention paid to us astounds.  What angels surround us in this journey!

I have started writing each day during the past two days and quit or was distracted after a few lines.  Tonight, after Julia went to bed, I labored over an updated resume for a policy-related internship which may be part of my LEND program.  And it is late now.  And Julia just asked to come into my bed “because it is nice to snuggle.”  So, this will be brief and if my eyes don’t close before I am finished, I will post whatever I get done.

Writing a resume.  Ugh.  Take a very unprofessional life and quantify it with names and dates and bullet points.  Just the idea of “updating” my resume sent my spirits and confidence into a tail spin, but I am holding fast and hard to the idea that I have something unique and important to contribute to the world I am entering.  I am not padding or stretching.  It is not a resume that will win some interview, but it is my background and a rough sketch of how I got here.  And that has to be enough.  

It is ego that wants to impress, that wants to win the qualifications game.  I am going to face this demon over and over this coming school year, and if I am going to make a place for myself among the experts and professionals, I am going to have to rely on something other than my degrees or work experience.  I have always had bold ideas and never had the nerve to see them through.  Here I have a bold idea and the resolve not to back down.  

And I have no idea where it will take me.

I went to the Quest orientation this afternoon.  Julia came with me and had much too long a time to do her dot-to-dot book and color.  She loved it and I felt somewhat guilty leaving her to do it.  The program is serious and still somewhat of a mystery, but the advice is to trust the process.  I found childcare for the first weekend retreat in September.  There are no electronics, even phones, allowed at retreats.  I am both excited and somewhat resistant.  

Julia is having good days but she is picking the skin on her heel at night.  She does it until it bleeds.  It must be painful but she does not stop.  Last year, when I could not control her scratching and picking, I brought her into my bed, put gloves on her, and laid down with her in bed until she fell asleep.  I wonder if I should be doing that now once again.  Reasoning with her does very little good.  Before she went to bed tonight, I gave her a foot massage, used a scrub on her feet and some moisturizer.  She went to bed with socks on but by the time she came into my bed, she had taken the the socks off and picked once again.  This is the same foot that is still healing from last year’s infected bug bites.  How much harm can one person do to her body before the body stops healing?  

Sometimes mothering Julia feels like plugging a leaky row boat.  And losing. 

Written 18 July

The compulsion of a few weeks ago to read blog entries for 2010 and 2011 seems to have passed.  And I seem to be maintaining a somewhat positive attitude that was rare only a few months ago.  13 days so far, albeit with some backsliding.  But that too is expected.  

I wrote in another venue: Had the strangest feeling today.  A picture of David came into view and I did not feel the searing pain that I have had for the two years and 13 days.  I was looking at someone who was gone.  It is not hurt as much but I've lost the immediacy of his life as well.  In truth, for the last few weeks I've felt much strong and more able to cope with life.  I've felt able to move along and on.  I am preparing for a short vacation and a busy fall, as well as getting ready for a september garage sale that will get rid of all the rest of the things that I do not need in my life (ok, the last is a bit of wishful thinking).  But there is less and less of me that wants to rely on David for consultation when I make decisions.  I don't think about pleasing him.  Fewer of the cells in my body still expect him to walk through the door at the end of the day.  This may be acceptance but it is sad.

We are at swimming lessons again.  After an early morning storm which brought very needed moisture to our yellow grass and drooping shrubs.  Forget about flowering plants.  I have been losing perennials that were planted last fall.  No matter how much I water, I am not rain and cannot get deep enough to keep the shallows wet.  I am so grateful for the rain.

I did not think that we’d have a lesson today.  It was raining a half hour ago, but the sky is clearing now.  It is cool and my sleeveless shirt doesn’t keep me warm, but after days of disgusting heat, I can’t even mind the occasional shiver.  Julia is jumping around in the water although Mary Beth quickly settles her down into stroking.  Yesterday, we came to the pool for a short swim -- the benefit of the season’s membership is that I feel no waste at all if we swim for 20 minutes.  I think we were in the water for about 25.  We went over Julia’s strokes -- front and back overhand and traditional back stroke.  All are shaky and we if we stopped swimming tomorrow, she would forget them all by the end of the week.  But I see progress.  She is proud that she can finally float on her back very steadily.  It is still hard for her to kick and stroke with her arms at the same time, but we practice.  I imagine creating neuro pathways that are footpaths through a virgin forest.  Although virgin woods are to be treasured, I am working on the superhighways. 

We went to some friends for dinner last night.  Four other kids for Julia to interact with and me with four other grownups.  Who did a better job?  I had to dig Julia out of the basement a few times -- she had remained playing with legos or playmobiles or dinosaurs when the other kids had moved on.  She played wii dance revolution for awhile with the others and she ate with them.  Her conversation still arch, awkward and stiff but she does not give up.  It is painful for me to watch at times -- no, all the time, but she is who she is and she works on it hard.  For this, I have to be grateful and I have to admire her spirit.  Many a kid with autism buries themselves deep inside.  Not Julia.  Not at all.

For all my feeling of change and moving on to create a new life, I am still difficult to talk to.  I have little to say and my comments are not always relevant.  I live in the insular world of Julia and my own thoughts.  How close to the insular world of autism am I?  If I want to be good company, I better start working on it.  Reading bits and pieces of the New Yorker are not enough.  I don’t want to turn on the tv again, but I need to look outwards if I want to join the onrush of the world again.  

Underwear report: Two days after shopping, I feel very good.  New underwear that fits and has no holes may be a gift from the gods!  I’ve promised myself at least one other shopping trip before vacation -- I need pants that fit and could use a new top or two.  A summer skirt would be fun but I don’t know if I can stretch myself that far.  I mean, I don’t know if I can stand shopping that long.

summer breakfast pictures

I am drawn to books about widows.  In the early months after David died, I read the widow how-to books or how to widow -- widow as a verb?  Next came, the memoirs, especially those written by writers, and I think I’ve commented about every one.  I’ve run out of those for the moment and I am on to the novels.  It is as if I am checking my form, my progress.  I am not an Olympian griever.  At least,  I don’t think so.  Am I a creative amateur?

In novels, the widow, usually in her 30’s or 40’s, goes into shock, resurfaces to resume life but hits rock bottom -- my favorite character tried to eat raw flour when she could not find cookies in her house, drinks to excess, and goes to work in pajamas before a mandatory leave without pay was imposed.  The widow slowly finds her way up from the mire, maybe she sells her house and rents an empty B&B or a loft or sublets something very modern from a professor.  She finds work that is completely different from what she did when she was a wife.  It is always more fulfilling than her previous occupation.  She falters, she doubts herself, she backslides, she cries and then she succeeds brilliantly.  The widow’s new occupation is inherently social as if to testify to the importance of getting out there after losing a partner.  Along the way she meets men and begins to emerge from the cocoon of her grief--a hair cut, new clothes, and high heels are part of the transformation.  By the end of the narrative, the widow begins, consummates or formalizes a new and wonderful relationship.  The new partner is broad minded enough to allow the widow to display pictures of her dead husband and even to mark the first anniversary of his death.  Yes, all of this happens within a year.  A widow for one year.  John Irving wrote a book by the name.  When I first read this scenario, especially the one year part, I was rather bitter that the whole process happened so quickly, but from where I stand now, I think I understand.  I’d want to write my story to happen in one year too.  One year of pain, of grief, of process is conceivable.  Purgatory, that limited time hell that the nuns taught, was always bearable, according to the teachings, because the soul knew that eventually she would “see God.”  Purgatory for a year sounds plausible.  

And just not to rag on the novelization of this journey, Joyce Carol Oats’s process from death of her spouse to re-marriage was about a year.  Nice job, Joyce! 

So, if I was to write the story of my grieving, I would shorten it as well.  Who wants to know or believe that at the two year mark, I am probably a bit more than half through my process?  Not quite seven months.  I’ve read over and over that the grieving process is individual and the widow should take as long as necessary to work through it, but I would not wish more than a year in grieving concentration camp on anyone. 

I am grumpy this afternoon.  I yelled at Julia before I took her to clinic and then I went shopping.  I hate the yelling and I hate shopping.  Throw in having the broken compressor on my car’s air conditioner fixed today and handing over my credit card -- oh, I am bleeding money this month.

Do I sound crabby yet?

Julia was tough today -- not just on me but on her therapists as well.  She was more distracted than usual, less able to focus on the people and tasks at hand.  She could not listen, and I lost my temper.  The temptation to yell at her is so strong because Julia listens when I yell.  She has trained me very well.  And I did, and she did as I wanted.  And I felt awful and apologized afterwards.  It left me crabby for hours.  Until we worked it out and were able to be right with each other again.  Part of the  crabbiness is fear, of course.  A child who is unable to focus . . . . how does the adult focus.  

The best of me with Julia is when I can focus and stay in the present.  And I practice and I practice.  And sometimes all the practice in the world is not enough.

Then, after I dropped Julia off at clinic for a therapy session, I went shopping.  Oy!  I do not shop.  And this is an understatement.  I am ok when I shop for someone else.  I can almost enjoy shopping when I do it for my girls, but for me.  Just never.  Comes from being fat as a kid, comes from always feeling like I should not spend money on myself.  

And I whine, why don’t clothes last forever!!  If I could only buy clothing that I could wear for the next 20 years.  Well, I have.  As I was going through pictures during the grand sort, I was startled to see how many of my clothes are really old, not worn out but old.  Well, maybe in some instances worn out as well.  And there are things that wear our rather regularly and need to be replaced.  Underwear is one of those things.  I haven’t bought new underwear in . . . . well, at least not for three years and I think it is longer.  I hate looking for bras and trying them on and paying so much more than guys ever have to pay for undershirts.  There, I said it.  I want to buy bras that cost what a pack of jockey undershirts cost.  

And I am laughing now.  

What a curmudgeon!  I could be David.  Not about underwear, but way to many things throughout his life.  And so, now me.  

Of course, I don’t buy a single bra or a few pairs of panties at a time.  Instead, I wait until everything I own is just about falling off me to replace anything.  Then I need a healthy bagful and that is expensive.  

Oh, I have to laugh at myself!  The curmudgeon is gone.  And I have new underwear.  Maybe, just maybe, I will learn to be better.  Somewhat more moderate in my shopping habits.  I need to love myself just a bit more.