The day is crisp, cool, green and blue and full of energy.  I’ve had good clothes on all day and so not doing any gardening.  And I need to get into the garden.  Julia is finished with therapy at 5:30.  We could go home and instead of rushing to get dinner ready, I could change and dig and allow Julia to hunt for bugs.

Ah, and bugs.  When Julia got into the car . . . before bugs . . . Yesterday, when I went to pick Julia up from school, she ran out of the building by herself!  It was the first time that she came out without an aide.  How to explain the small victory, forward movement.  Because transitions are such a challenge for Julia, leaving school could be just as difficult a transition as trying to get her to stop drawing.  For years, she has been the last kid out of school, sometimes with coat half on, or back pack half packed with her adult trailing after her with full hands or almost dragging her out of the building.  She rarely would say hello to me when I was meeting her and would refuse to say good-bye to the faithful grown up who had delivered her to me.  So, some of the challenge was transitioning and some of it was the shutting down that transitioning could bring.  The long term plan was to fade the grown up help so that she could leave independently like all the other kids, but I didn’t see it coming so soon.  Yesterday was the first time she came running out of the building, looking like every other 5th grader.  And today, she was very much disappointed because I picked her up again and she didn’t get the chance to run to the bus by herself.  Run to the bus by herself!!!

And the bugs . . . so, when Julia got in to the car, she told me she had been catching bugs and wanted to add them to her bug collection.  I asked where she was keeping them right now and she said in her jeans pocket.  Umm, well, they can’t be alive, I told her.  This was not good news and when I checked them out, it was clear that none of them were moving.  She was disappointed and decided that she had to figure out how to bring them home alive.  

What an interesting child.

I went to a Family Navigator meeting today and felt my usual lost, confused, ineffective, and just plain stupid since this was my first meeting of a project that has been discussed for months but is still in the formation process.  My task through that meeting was to breathe!  And to let it happen.  To remember that I am the student here.  No one expects me to lead here.  And I don’t have to lead here.  Reading this over . . . well, duh.  But this is my underlying processing.  To be competent, to be successful, I have to eventually lead.  And, wow, that is crazy.  

So, I put myself in these places where there is no way that I will ever lead in order to learn things that there is no other way for me to learn, and then I ensure that the experience will make me feel badly because I define success only as leading.  There may also be a reverse that is operating -- when I am in a place where I will become the natural leader, I do not value the experience because it is too easy.  So, I cannot help but fail if I intend to lead the Family Navigator project and I give myself no credit for working to launch the Special Ed PEG group because of course, I am the natural leader on that one.  

Acceptance, acceptance, acceptance.  Just who and what I am.  

I am studying on line for Safety and Infection Control Clinical for non-employee students and non-UWHC employees Exam that I need to work in the clinic.  It is not a big deal and I reviewed the material and took the “exam” last year.  I am not sure what I thought about it last year.  This year, I see all of the ways that David’s final sepsis was almost inevitable with his compromised immune system and ineffective gal bladder.  There is so much here that I don’t mean to infer -- no blame, no caregiver bringing in infection, not even our own unintentional load of bacteria, etc, coming into his hospital room.  But @#$## (much more fun than writing out a curse word and I don’t even know what curse to use), I read this stuff and wonder at how slim his chance were.  How much so much was dependent on a string of miracles.  How many miracles we experienced but how many more were absolutely necessary.  And we did not know that.  We thought it was all science.

It was so much more.

And there are so many miracles that touch me and my loved ones every day.

I marvel at spirit.  I look up in wonder.

Written 4 July 2013

My reaction to the day, anniversary of the last day of David’s life, is once again different than it was last year.  My sadness is not gut wrenching.  I can make the decision not to be miserable.  I did things today -- well, gardening and going to the swimming pool.  I am planning to take Julia to fireworks tonight.   Impossible two years ago, pretty indifferent about celebration last year.  This will be the first year that I will not have someone to help with Julia today or tomorrow.  And that is ok.

And I have a new plan for tomorrow.

During the last two years, I have holed up with Julia, ordered take out Chinese or Indian food and watched a new Myazaki movie.  Tomorrow, we have a few friends over, eat together and watch the Myazaki movie that I bought for this year.  It is not a big gathering and very safe with friends who would not think less of me if I went to my room to be alone.  Although I don’t expect that to happen.  

I want to court happiness and joy and I have to begin somewhere.  Close friends, food and a movie is a start.  Of course, this newest level of non-misery is already a few weeks old.  Two weeks ago Sunday, when I felt grateful in the sunshine in the pool was my first notice of it.  I am enjoying the water aerobic class a few times a week and I do like just sitting by the pool typing like I am doing right now.  

And the garden is coming along.  I make a weekly trip to my big box store to see what perennials are marked down and bring home a few and find places for them.  I am slowly emptying two garden beds in the front of the house -- one to turn back to grass and the other to replant with some plan -- and clearing back beds of weeds and invasive plants and moving extra perennials to empty spaces.  I am beginning to just “see” what plants belong where -- a connection with the space that was completely lost to me.  I am planting with the knowledge that I will not see much results for a year or two but imaging the results.  Imaging future.  Perhaps that what I mean when I say I am gardening again -- taking up the optimist viewpoint of a gardener.  Plant for next year because next year will come.

The tomato plant in the new raised bed in the backyard has doubled in size in the last week.  The basil is also doing well.  I potted up a few herbs and another tomato plant for the front deck.  I am glad that I thinned out my clay pots last year and glad that I kept my favorites.  I want to bring some of the herbs inside in the fall.  I want plants inside again.

And I am back to sorting papers and pictures.  Getting the ten boxes of slides out of the house jogged my initeria.  Maybe changed my initeria is more accurate -- motion will continue once started.  Perhaps I will finally mail out copies of David’s book to friends and family pictures to relatives.  It has taken a long time to get back to that work.  Again, it feels like the right time.  

What comes to mind is the direction that seems part of every lesson -- trust the process.  Let go of to-do lists, let go of step by step goals.  Make an intention, aim for the outcome, do the work and let it unfold.  Pretty difficult for me but I am learning.  

I wrote to a friend of a friend, a neuroscientist and meditation teacher, asking for advice about my long term project.  By the time I was finished with the email, I almost knew his answer.  His gentleness and respect was very welcomed.  His answer -- let the practice lead me.  He didn’t say not to rush, but that was between the lines.  As was, trust the process.  Perhaps that was the answer that the Waisman woman whose answer felt so cruel and dismissive months ago meant to convey.  I reacted to her tone.  That alone clouded the message.  I am very grateful for this friend of a friend.

A day before the equinox.  A day before the beginning of summer.  Sitting watching Julia’s swim class -- a little less stressed than I was on Monday when I was probably the only parent sitting at the edge of a chaise lounge tensed and ready to have the instructor tell me that he could not handle Julia.  But the classes are small -- 4 or 5 in her class -- and the teacher is young but not at all phased -- at least on day 4 -- of Julia’s occasional lapses of attention.  I wonder if he has done this -- taught a kid with challenges -- before this.  Julia is swimming with 3 boys and her attention lapses is not a extraordinary as it might be in a class of girls.  And watching the girls in other classes, I think my observation is spot on.  Girls listen, they line up when asked, they try what the teacher asks of them.  

Sometimes Julia hangs on her teacher and I wondered what the response would be, but the boys do the same thing.  And I don’t think any of them has challenges.  Interesting, one of the boys in her swim class is also in her class at school.  His father brings him to lessons and stays around.  When the kids (and instructor) went to the diving board, I got up to stay close and the father of this boy did as well.  I said to him, “Good to have another overprotective parent in class.”

So, to day I can almost sit back on my chaise and type.

A few more Julia things:

After swimming on Tuesday, we stopped at Waisman so that I could finish my work for the spring term.  Julia brought a book, a sketch pad and her iPad and I hoped that I could work for a bit more than an hour.  She found the family waiting room which is next door to to the Resource Center empty and there was a box of dinosaurs, some dinosaur books and a doll house.  She never opened her back pack and played for an hour and a half.  It was the first time that I tried bringing Julia to “work.”  Something I did much too often with Cheshire.  

When we were finished at Waisman, it was lunch time and we crossed the street to eat in the hospital cafeteria.  As soon as we went in, Julia told me that this was where Daddy died.  “Was this food that he did not eat?”  During his last week, David did not eat well.  One of the reasons that I called Cheshire home that week was to have someone else to be in the hospital to make sure that David was eating and drinking.  Julia heard that phone call when I said that and ever since attributed David’s death to his not eating.  At least in part.  

Julia asked if we could bring our lunch to David’s room and asked if maybe he was still here -- as if, possibly we could get him back if we only went to his old room, possibly we could bring him lunch and we could have him back.  The sweetness was heart breaking.  I’ve been in the cafeteria many, many times in the last three years although I remember when being there was sad and hard.  I had no idea the Julia would remember but no question that she did.  Again, we talked about David and dying and never coming home again.  She took it in again.  She did not ask if I was sad.  Something has changed for her.

At Marilyn’s session this week, we worked on the page in the trauma workbook that was about Miao-Miao being sent to school and Julia being told that she was stupid and not allowed to go to school.  She drew a picture of an incredibly angry Bai-Bai fuming like a volcano.  When she explained the picture to us, Marilyn asked if she was really angry back in China.  “No,” Julia said.  “I closed my eyes real real tight and went somewhere.”  When Marilyn probed further, Julia took the page back to draw a small t-Rex and a “machine.”  The dinosaur and the machine ate the Ayi who told Julia she was stupid.  When she finished her picture, Marilyn asked if Julia was the dinosaur.  “No,” with an intonation and could have added “Crazy lady” to her answer.  “I am the girl who is angry.  My friend, Lizzy, is the dinosaur who helped me.  She was a fie dun in China.”

Are these the answers?  Julia, angry and hurt, disassociating and making up the most terrifying thing she could think of to defend her.  Julia, who would only answer to Julia Dinosaur for more then a two years, is now the girl with a dinosaur defender.  And what is a dinosaur now, was the fie dun in China.  

The work book has been so very useful.  Every week we creep a bit closer to self-knowledge.  She owns her own story and perhaps she can heal.

Julia’s lesson is over and we sit, my tapping away and her drawing dancing dinosaurs on the chaise lounge that is now in the shade.  Yesterday, I was feeling like I could not make my body more.  I was going to nap during Julia’s therapy but I went outside to garden instead.  Slowly, very slowly, some of the messy garden beds are getting shape again, some for the first time.  I am working at an incredibly slow and unorganized pace and enjoying it immensely.  

And then, last night I had a dream about David.  It was one of those dreams that is so real that waking up is confusing.  I haven’t dreamed of David in a very long time and I still don’t remember many of my dreams.  In this dream, I came upstairs to our bedroom.  David was in bed  during the day.  I had something to tell him that was happy. I jumped onto the bed and snuggled up to him to lay in the crook of his arm.  I just laid there, smiling and saying nothing, feeling his arms around me and falling to sleep.  When I woke up, I was not sure where David went.  Then I remembered and was sad, but it was a much better the dreams in which I knew that David was gone but had no idea of where he went or why or how.  

Can I really have two terrible, awful, horrible day in a row?  

Perhaps.

Just a bit of it yesterday was my fault for not going with my gut, but really . . . 

So, Thursday, I had the morning to myself and I planned to garden.  Rain.  So, the house was really dirty so I cleaned.  I stripped beds, shook out rugs to be washed, and piled Julia’s camping stuff, including sleeping bag, by the washer to be washed.  Then I went upstairs to start in my room.  I tripped on the blanket on my bed but caught myself on the door, jamming my left hand into the door, dropping everything in my hands, scaring the cat who jumped into the window with a crack (that was going to be fixed next Monday).  The window broke showering the bed and Julia’s stuffed dinosaurs with glass.  

I took a few deep breaths -- The thought I am working with this week for meditation class is patience and thus, the breaths -- and laid down on the non-glass strewn part of the bed.  After a few minutes, I got up and started cleaning.  During the day, I bumped into everything that I could and knocked over anything that could fall to the floor.  I still have the aches and pains of the day in my hands and elbows and knees and back and one ankle.  It was as if, I was traveling a few seconds off the rest of the world or my coordination was tilted.  In the afternoon, after attachment therapy, I dropped Julia off at home and went to pick up a few grocery things and found myself knocking over what was next to what I was picking up.  

When I got home, I went to check on the wash, and found a flood in basement.  I have a pipe that leaks when spring rain is at its worst.  It is on the to-do list  and almost budgeted for, but even when it leaks, the water usually drains quickly in the main house drain with no real problem.  However, the main drain pipe was backed up.  I didn’t know this for awhile and tried to scoop up some of the water and put it into the sink by the washer until I realized that when I put water into the sink it would come up from the drain.  And it was too late to call a plumber.  

I shoved a pizza in the oven to avoid any use of cooking utensils and Julia and I ate and went to bed without further incident.  And I held onto sanity.

Whew!

So, Friday morning, I called a few plumbers and decided to go with the one that neighbors had recommended.  I had some misgivings about him when we spoke on the phone -- just did not sound responsible, but his price was the best and I had the recommendation. He was supposed to show up at 10:30 and when I called at 10:50, his voice mail was full and I couldn’t leave a message.  I was due at Waisman at noon, and was stressing out.  I finally called the plumber closest to me.  They came at 12:20, I let them in, showed them the problem, gave them the keys and asked them to lock up and put the key in the mailbox.  A bit crazy, I know, but I needed to leave.  

I came home at 4:30 and everything was fine.  I ran another wash and took a shower.  No flood.  

So, it was 1.5 terrible, awful, rotten days, and that was all.

Friday night, I had respite time but no one to do some Friday night activity with and so I took myself to the movies and popcorn and a beer.  The movie was good but more than that.  As I walked out of the theater and to my car, I had the feeling of milestone.  Of chrysalis.  I have not arrived.  I am not happy or joyful or content, but I have found strength.  I am someone else than who I was.  Right after David died, I held the image of going into free fall and trusting (and hoping) that angels would catch me.  I have been falling for almost three years. Tonight, for a time, I felt the bounce, the big in-breath of relief that being caught allows you to take.  I almost didn’t know myself.  I was surprised.

And I would say that during the afternoon as I watched the first year LEND students finish and graduate from the program, some ideas formed in my head for next year.  I have to talk to my mentor next week about them and I know that I will be shot down some and discouraged, but I cannot shake the feeling that it is important that I am there.  Not big, incredible important, but important all the same.  After our graduation, I was talking to one of the mentors who I like but haven’t spent much time with this year and she told me about some of her work and mentioned that she had been at it since 1985.  Something washed over me.  I have been trying to run with those who have been doing their work for a long, long time.  If I can keep up for a few paces, I am succeeding.  When I step back from my angst and worry, I have gratitude for this privilege of being there and being listened to.  Not all the time.  Some of the time and some people.  

Another day.

Last night, Julia and I sat down to do a pretty formal family tree.  Once again, I gritted my teeth.  This is a tree that has no room for the people in our lives, only for the genetic ancestors of David and myself.  There is no space for other children or sibling, let alone our beloved friends who are more family than those who are genetically linked.  At times, it seems like family ancestry is another “R” and required labor each and every school year so that a child who does not know their formal “family” will never be allowed to forget the fact.

However, Julia took on the challenge with gusto, prodding me about the spelling and pronunciation of each name.  She took in the Sarvetnick’s and the Zlobicki’s and the Batt’s and Krauchuk’s and the Levine’s and the Reszitnyk’s never once complaining about long, impossible to spell names.  These are her family names and although I might be reading into her steadfast application to the task, I felt her respect, as if she would have no problem setting up an ancestor shrine like the one in the movie Mulan, especially if she could put in a little dragon or dinosaur.  I asked her and she had no trouble agreeing to put the names “China Mother” and “China Father” next to David’s and my name but my heart hurts for the other family who will never have the gift of Julia’s honor and respect.  And it is something that is not within my power to give her.

I send them my grateful heart for my Julia, but I do wish that we could take them into our family.

I had my second MBSR (Meditation Based Stress Reduction) class today.  I was a very bad student all this past week.  I did not read the suggested reading, did not fill in my meditation log and did not even do the informal practice that I had been assigned.  I have been unwilling to fully enter into this experience even thought I committed to it after so much considering and deliberating.  I should not punish myself or feel guilty -- that is so much against what they are trying to teach me.  I should not even regret.  Instead, I should be returning to my commitment anew again and again.  Perhaps this considering and re-dedication is my first informal practice.

This school year is winding down for me.  I have another two assignments to finish, but little else.  Nothing is settled for next semester and at present, I feel only the need for some space and time.  I need vacation.  It is not that the work is so much stress and strain but that I am still cannot see how doing what I am doing now will lead me to what I want to do.  Whenever I go down that road of thinking, I think that I must be judged incredibly foolish to go begging for work that is only a dream in a place that wants evidence based practice and lettered leaders.  But fortunately the MBSR word of the week is “non-striving” and if I use it as a guide, I should be drawn back into the present and follow what my heart knows is correct and appropriate.  This is not easy for me.  My mind darts to future and past; how difficult to sit in the present.  How difficult to wait and trust that what is to come will unfold in its own time, not in mine.  

One of the final tasks of the year is to chart my progress through the goals that I set in my Individualized Leadership Development Plan.  I cannot make myself sit with it long enough to do another edit -- I am not sure that what I have done is directly related to my proposed goals and I have no clear vision of what I will take on next year and how it will move my toward my large goals.  And I wonder how much this paragraph related to the last?  It is not that I am unwilling or unable to work hard.  I am impatient to know what to do and how it will relate to larger goals, but I do seem to be mired in the present and assigned to let what is to come unfold without foreknowledge. 

I feel like that there is an answer here that blows past me.  I am not very good at hints and clues.

On the gardening front, which is still pretty bare, we have our first open daffodil.  Neighbors have more, but we seem to be on a "cold" corner.  One daffodil!  It does not satisfy me in the least but there again, more unfolding that is out of my control.

It was rather a small miracle to wake up on Tuesday morning without pain.  The flu was almost over!  I still carried a small and constant headache and a queazy stomach but that was nothing compared to the total body ache of the days before.  I am still a bit tired, that extraordinary tired of being sick, but definitely on the mend.  

And it was fortunate to awaken without pain because the snow was beginning and over the next 24 hours, we were gifted with another multitude of inches that also seems to be more on my sidewalk that what they report on the news.  Still, no matter the tally, our lawns and gardens are landscaped in higher and higher white mounds.  If there is any whisper of spring, it is that a day after the snow stopped the shoveled sidewalks are clear to the pavement, proof positive that it was warm enough yesterday to get rid of the bits of snow and ice left behind by blowers and shovels.  

I hear that we spring the clocks forward this weekend.  I haven’t checked and wonder if it is true.  We are still so far from spring.  

Over the last week at school, Julia’s class has been writing about their families.  Julia brought home her notebook with the writing a few days ago and we read what she wrote together.  I am pretty sure that she had a lot of help because the composition was too smooth to all come from Julia, but her ideas were there.  I sent the notebook back to school without copying the paragraphs and now I wish that I had.  From what I remember, we are all tall, Cheshire and I are pretty and we both cook very well.  Our house smells like baking cookies and Cheshire really likes hanging out with Julia and make gingerbread houses with her.  Julia wrote about Daddy being tall and handsome and smiling all the time.  She said that he like to “write a lot” and we all liked music and reading.  She closed by saying that hers was the best family in the world. None of this is untrue but it is such a lovely, sweet romantic version of life.  I am pleased that she has it.  

After we read the essay together, Julia was quiet.  Then she said to me, “Mom, when Daddy died, you and Cheshire were together all day.  And I was alone.”  I was stunned that she was thinking about that, remembered any part of that day,  I told her that she was with Cathy.  And she said she remember but that she was not with us.  Then, I realized that my memory of the day was that we had shielded her from any knowledge of what was going on until later in the day when Cheshire and I came home from the hospital and I told Julia what had happened.  I have never thought to explain that day to her, didn’t imagine that she remembered any part of it.  And I am not sure that her memory is what she was feeling that day -- there must have been some pretty heavy sad atmosphere in the house even though she had not been told that David had died -- or whether she has thought about that day since then and realized that she was not with us.  Either way, it is far beyond what I thought her capable of.

Julia studied for a test for the first time this week.  It was for science -- magnets, circuits, and a bit of electricity.  There was a review sheet sent home and we went over it a few times.  I review it with her and her therapists did as well.  We all read it over and quizzed Julia on parts of it but it was all very light and quick.  I talked to her special ed teacher today and she said that when she gave Julia the test, it seemed like she had studied and she knew most of the material.  How cool is that!

In attachment therapy today, we were working on a hard page in her trauma workbook, a page about being put in a dark place and left alone when her behavior was bad at the orphanage.  It was a short paragraph, one sentence, and she took it to draw.  The picture of an almost naked little child with a volcano’s worth of anger pouring out of her behind a shut red door was startling and poignant.  After she brought the picture back to us, Marilyn pushed her to talk about the place.  Julia became icy clear as she talked about her feelings and what happened to her.  Clearly this was something that happened often and when she was an older kid at the orphanage.  One thing she said was the they made her take off her clothes when she put her inside the dark place which probably was a closet but what she could only describe as small and dark.  She told us that was why she would not sleep in the dark and that shadows scared her a lot.  During part of the talking, Julia was silent and was clearly not with us, either immersed in the past or disassociating.  She has not done this in a long time.  When she was finished talking, we tapped about fear and anger and sadness.  She was able to feel safe and sure that those things would not happen again to her.  When it was all over, Julia drew a picture of a baryonyx dinosaur holding a fish to eat.

Yesterday, I walked to one of my Waisman mentors, Barb, about what I was going to do next year.  So far, nothing has easily presented itself.  I moaned and groaned about that fact and that I don’t know what to look for.  After talking to another mentor a few weeks ago, I was encouraged not to look beyond what was possible in LEND -- a fit your dream into our box, at least for now.  I have thought about just leaving Waisman and pursuing some experiences in the community, maybe engaging in the contemplative practice community or at FUS, but after entertaining the idea for a short time, I come back again and again to feeling sure I should be doing something at Waisman.  Early this morning, when I first woke up, before the alarm, I felt a peace come over me.  Feeling sure that some opportunity will come forward -- not that I can sit back and wait but that I have no reason to stress about it.  I also realized that I will really miss the Resource Center at the end of this semester.  I am truly enjoying the work there and feeling useful.

I have been caught in the mire of self-pity for days on end now, and off and on, but partially acknowledging it, partially asking for help rather unconsciously, and partially engaging in the days so that perhaps I can move on.  And then there are the days of just deciding to get through the day with  few physical chores and be tired enough to crawl into bed and face oblivion at day’s end.  Not too different from all of the therapy that has trained Julia to recognize, name and regulate her emotions.

Sometimes doing what is better for us, enriching instead of fitting out roundness into those square holes.  Case in point, we did not attend the FCC Chinese new year party where I have always felt like the odd family out.  It was fine the first few years when I knew a few families who went -- one with a special needs kid -- but more and more, it seemed like everyone has that perfect Chinese princess and there was no place for us.  This may have only been my perception, but it was painful.  And so, instead of the pain, we celebrated with Robert and Mary and some very good Chinese food.  And that was enough.  

16 February 2013

This morning I was sick to death of living alone.  Sometimes the first person that I talk to, other than prodding and pushing Julia to get out the door in the morning, is the valet parking guard when I park at the hospital.  He says, “Hello, how are you?” and I realize how welcomed these formalities are.  I don’t know if I will ever be happy living alone.  Julia has learned to occasionally ask me how I am but has not learned to wait for the answer and to feign concern.

Julia is using more similes -- looking at a shadow of her head in the early morning, “I have a pineapple on top of my shoulders.”  umm, does it make it a metaphor if she doesn’t use “as” or “like?”

She folder 28 paper cranes to make a mobile for her secret friend at school.  When her enthusiasm waned last weekend because she did not know the name of her friend -- a precaution to keep her from telling the secret -- I revealed the name of the girl.  Julia was able to keep the secret for the entire week.  Afterwards, I heard from Julia’s secret friend’s mother.  The friend loved the mobile and it made it home in one piece with getting tangled.  

Julia’s classroom teacher was her secret friend.  She made Julia a wonderful large collage of animals which will be hanging up somewhere soon.  Julia loves it and it is very dear.  She also baked green dinosaur cookies for Julia and made her a little bracelet.  I had one very happy girl!

She had a good week of learning to tell time in 5 minute intervals; however, when she was asked about some of the terms we worked on perviously -- greater, less, first, last, etc. -- she had no idea.  Autism, ADHD, IQ?  I have no idea.  She does not have the problem with reading.  Words stick.  But she has been reading longer.

If it is that Julia needs more circling back to cement ideas, I’ve started to be more deliberate, intentional perhaps, about using “first,” “last,” etc.  I will not give up on those ideas.  At least, not yet.

One of my mentors let me know that I do not ask for help in the most advantageous way.  I am too direct and go to much to exactly what I want instead of finessing the experts whose time, energy or advice I crave.  Considering the rather lousy results that I’ve gotten lately, I could do nothing but agree with her and walk around feeling bewildered and awful for a few days.  It was awful to hear that after finally coming to an ability to ask questions and to ask for help, that I was doing it wrong!!  

But the day after, I managed an afternoon tea with a contact from the holistic world who has done with a form of yoga what I would like to do with meditation -- bring his brand of positions which are the result of his own theories and practice to the autistic community.  Much of what we intend is different but there are places where ideas meet.  It was a good conversation and incredibly, he was the first person to asked me meaningful questions about my practice with Julia.  The questions propelled me forward over the next few days and during the last week, I have tried to keep Julia more present and with her breath during our morning strong sitting.  

It was a good meeting.  After we work a bit on the new form, I will describe it.  For now, it is changing every days.

Tonight, it is bitter cold outside.  After school, we had therapy at the clinic and then a quick stop at the Apple store because I was having trouble with our iCloud storage which was making Julia’s iPad freeze.  I knew that i was missing something to turn off or on but I needed  a shortcut to figuring it out.  After the Apple store, we stopped for Chinese take out instead of cooking at home.  I wanted it hot and quick.  I started a fire in the fire place and we ate dumplings, dandan noodles, and eggplant in garlic hot sauce while we watched a nature show about the steppe of Kazakhstan. Afterwards, Julia wanted to watch the fire and we curled up together on the floor in front of the fire and just enjoyed the warmth and the flames.  It was particularly cozy and we were quiet until Julia asked to go to bed.

I have taken to questioning the past.  Hell, I wake up questioning the past.  It is like some automatic physical process, like blood flowing or heart beating.  Questioning does as much good as regret and regret seeps into it.  

It is a practice to live each day in the present and the comparison to meditation instructions is pretty clear.  When a mind goes away from the breath, acknowledge it and come back to the breath.  When the mind dwells in the past, acknowledge it and come back to the present.  Suddenly the process during meditation is easy-peasy!  Suddenly what I have been hearing and reading about -- bringing this present living into living has some basis of comparison.

Metaphor and application.

Are there a million “duh’s” out there?

Loss still sucks.

I had a splendid day at Waisman on Friday.  My first one.  I have been there since September of 2010 -- absent for most of the 2011 school year -- and it has been long haul of being the bike peddling fish.  And I know that Friday was just one day, and that Monday holds no guarantees.  

On Friday, I was able to do some work at Waisman that felt like it contributed to the community.  It was not complicated work or work that required great expertise or learning, there was little that required unique talents and gifts, but still I could contribute.  The day went like this -- early morning started in the Resource Center loading summary sheets into a newly created file, attending the Grandparents Coffee Group and contributing my $.02, then a meeting with the Trainee Resource Center Team and plans to complete the first phase of our project by next Friday, then a Wiley lecture about Fragile X, gene therapy and implications for wider use, then a LEND lecture about having a business mind, and then facilitating the Life Course Story Team.  

I was able to let go of where I fall short and just do what was in front of me.  I found some joy in this.  I immediately want to qualify that joy and say what it is not, but what it is is a beginning.  It is precious, possibly fleeting, but I am very grateful for this first day of being of some use.  

1 December 2012

Mid-air heading east & DC

Traveling to DC to attend the AUCD Conference.  Two planes, an afternoon and most of an evening’s travel.  I sit and read the Richie Davidson book that I’ve been carrying around since the summer.  I take his 6 true and false tests about assessing emotional style.  At this moment, I wonder what my style would have looked like last year or the year before that.  The statement that stops me cold is “I expect that the next ten years will be better than the last ten years.”  I think I have always been able to answer “true” to that one.  I really can’t right now.  I’ve grown in resilience and regained some optimism.  I have some reasons and objectives and goals, but I cannot help but miss joy and the awareness of being the beloved.

Still, the switch that was thrown a few days before July 5th remains firmly in place.  I assess as resilient and focused, at least by my own appraisal.  And I am.  

Nice hotel -- Hilton in DC but I don’t know this town at all and I am scheduled almost every minute of my stay.  Tonight’s after-flight dinner and perhaps tonight after 8 are what I have free.  Two lunch times are taken, and if, perchance I really do network, I could fill more.  Right now, I feel a bit of a whine coming on about a full dance card but I know that busy and time filled is where my comfort zone is strongest.  And the fullness is my choice of exciting options.  

They don’t take credit card in cabs.  I have a map.  Maybe I’ll do the run/walk -- and you know where I will be -- tomorrow morning just to see the neighborhood.  The physical activity wouldn’t hurt me any.  Needing very hard to be back to activity.  I brought sweats and sneaker thinking this might be the time.  

Cable tv in the room and after surfing for 20 minutes, I have no regrets of living without it at home.  My junky tv comes in on Netflix and Hulu.  It’s all I need.  There is so much noise on tv.

Bedding down and sleeping without a thought to who is sleeping in the next room.  Funny how it is like turning off a light somewhere in the house.

So much better a handle on the week as compared to last week.  Today is the quintessential early November day -- pretty cold, very grey, a constant drizzle, and kinda’ dark.  It was snowing, just flurries, earlier this morning, and I was so grateful that I  had finished up all of the yard work last night!  I cut, raked, and piled garden debris and leaves in the back garden on Sunday and then in the front and side gardens yesterday.  By the time I finished yesterday, the street lights had turned on.  Twilight not dark, and I was exhausted last night.  I need one more 2-3 hour slot to clean the garage so that my car fits in, and I need to bring my snow blower in for a tune up.  Then, I will be ready for winter to begin.  

I worked the weekend on my DRW project.  I had an idea to follow through on.  I did the research on Saturday night and part of Sunday and then made phone calls on Monday morning.  This is what my supervisor needs and for the first time I feel like I can give her something of value.  This satisfied feeling does not mean that I want to continue there.  In fact, I think that I could work so well and efficiently because there is an end in sight.  I am not sure of the timing of the end but I am planning to ask that it not be longer than the end of the semester. Likewise, in the satisfaction department, the resource center work is going well.  I have an assignment and I feel like I can ask questions.  I also am finally getting a vague understanding of the systems -- federal, state, county -- that offer service to kids with special health care needs.  I am just learning the kids system.  The adult system is totally different.

This week seems to be about coming out of the fog and chaos that has prevailed since school began and into a quieter, more orderly place.  Julia has art therapy right now and when she is finished, we will go home and be alone tonight.  I am planning on an early dinner, watching the end of Chicken Run, playing some wii sports, and then to bed.

Yesterday, I discovered that Muta, the cat, has been peeing on Julia’s bean bag chairs in her room.  We had a corner set aside for reading with a carpet, bean bag chairs and a large stuffed horse.  The carpet and the horse could go into the washer but the chairs are in the garbage.  I am not sure there is a why here.  It might be because I filled the cat box with a litter that had some odor control.  I had tried to use it when the cat first came home and he would not use it.  He has been going out at least once a day and I assumed that he was peeing outside.  Unfortunately, that was not the case.  Julia was disappointed that her chairs were ruined but she took it in stride.  Taking disappointments or changes in strides comes more often but I never know when the obsessive need for control will rear its head.  

When we were in speech therapy yesterday, she HAD to fold paper used in an activity exactly on the dotted lines provided.  It did not really matter how it was folded but she could not get over the fact that one of the papers was not exactly correct.  Her need for perfection robbed her of concentration and her ability to respond to questions.  Thinking back over much earlier behavior, I wonder if she had this feeling more often and this was a reason for some of her very stubborn behavior.

At school, there is testing going on all week.  I have no idea what they are doing with Julia and I am not sure exactly who to ask.  Her special ed teacher left a week ago for a new position and Julia has had a sub (who is not a special ed teacher).  The sub may be long term and I am trying not to stress about how what is going on.  I have a conference with her classroom teacher next week, and I will wait until then to ask questions.  I am not confident that there will be a replacement anytime soon.  It might be next semester before Julia has a permanent teacher, and then we have to go through the process of getting to know each other and developing a relationship.  Suddenly, this second year of fourth grade does not seem like a guaranteed success.  Oy.

Trying not to stress.  Breathe.

Last Saturday, it was my turn to go to church school with Julia as the parent helped.  Julia has told me before this that church school makes her sad.  When I  have asked why, she said that the kids didn't like her.  I've been telling her to talk to the kids, but from what I saw on Saturday, she was pretty dead on correct.  Only one kiddo there gives Julia the time of day.  On Saturday, Julia and I sat at a table alone during the class.  Another girl who had been sitting at our table when we sat down, moved almost immediately.  The teachers are very nice but I think they don't have a clue that this is even an issue.  I’ve written to the religious ed director and we will be meeting in the next few days.  I hope that we can do some education of the teachers and the kids within the next few weeks.  I am not sure that I can return Julia to the class until some change in put in place.  I love to be in church listening to services but I can’t do it at Julia’s expense.  

Tonight my heart is in my throat.  It is just after 8:30 p.m. now and any thought I had about doing work was just crazy.  This is the first election that I have been cognizant of that I have not sat glued to a television set.  I have no cable and no want to get local stations, but I have the internet.  And so, and so, I sit here, trying to read over what I wrote today and flipping back and forth among facebook (to see what my friends are saying), the New Yorker website (I just like them), MSNBC, and just a bit of Fox.  After I post this, I will start some junky movie -- romantic comedy would be my preference, nothing that will tax a single brain cell.  After the 2000 election, nothing can be taken for granted.  

Halloween.  Okay.  I need a good wallow.  Right now.  Julia had a wonderful time going out from house to house saying almost appropriate things at times to strangers and neighbors.  I am still trying to protect her, interrupt her, stop her from more inappropriateness.  And she doesn’t really care.  It is me and not her.  My own need to be in the neuro typical club.  Most of the time when we are alone we are in our own normalized world.  We can add those grownups who accept her and one or two kids who are the same, but let her out in the general population . . . but it is my problem.  She is working it out for herself.  One of her aides today in school commented about how much better Julia is working.  And Julia is working it out -- tonight, I saw her ask a few kids their names or complement them on good costumes.  Sometimes she is still using a script of sorts.  Sometimes she talks much too loud or invades space, but she uses the skills that she has learned.  

Forgive me, but tonight I just want to know that she will have a place in this world when she grows up.  Living this day, present in the present is my lesson.

Last night, we watched an episode of Avatar - The last air bender during which Ta, an earth bender, tells her friends that her father has let her travel around the world.  She is going with her friends.  Julia ask me why Ta would want to travel around the world.  I told her that it would be a great adventure.  Julia loves the word adventure.  All our trips are adventures.  Then, she asked why her father let her go.  “Wouldn’t he miss her?”  I thought that her father would miss Ta but that sometimes kids grow up and want to travel alone or with friends.  Julia took my hand and said, “Mom, when I grow up I will go around the world with you.”  

If Cheshire had said such a thing when she was little, I would have smiled, maybe told David about it, or possibly told the story over lunch but it would not have been more the just sweet.  To hear Julia say such a thing is so much more.  First, she now talks about growing up.  There was a time when she would almost have a melt down if someone asked her what she was going to be when she grew up.  She is owning her own growth.  And second, she wants to go with me.  We may not be perfectly attached but we are family and she wants me with her.

Both great strides forward. 

But then . . . in school the other day, Julia’s teacher needed to correct her for something.  Maybe transition behavior.  Nothing awful and no big threat.  Julia turned to her teacher and asked that if she didn’t do as she was told would she get sent back to China.  I think it knocked the wind out of her teacher.  Yes, it is sad that Julia says this but I see it as positive as well.  Julia is aware of cause and effect.  She understands that her behavior can impact how others treat her.   She has a wider world.

Julia finished her time line tonight with one of her therapists.  She is excited about bringing it to school.  I have to go into school tomorrow for a meeting first thing in the morning.  Maybe we will bring it in then so she doesn’t have to handle it on the bus on Friday.  We helped her a lot but the core of it, the content of it is so much her.  I’ll post pictures in the photo blog.

And today, I said something to my LEND mentor about not completing my internship at DRW.  It is an interesting place, they do great work -- advocacy and lobbying.  I work for an incredible woman.  But I know that I don’t want to be involved in the systems level world.  I respect what they do -- and oh, how much i wanted to work there when I first moved to Madison -- but I don’t belong there.  I feel like I never do enough work there and I really don’t want to bring that work home.  Truthfully, I don’t have time to bring that work home.  I am barely reading anything that I had planned to this semester.  I am overloaded -- yes, I did it to myself -- and this is what must go.  I am going to feel awful withdrawing -- a bit like a failure -- gosh, I have to please everyone!  What a stupid burden.  Just too much of my own anxiety around doing “enough.”  

Ellen left me with something last time we spoke.  “Holding my part is enough.”  You know, this too is something about coming out of the grief mode.  I’ve lost my anchor, he who reflected back to me.  I need to do it for myself and at this point, I am still lousy at it.  I’ve always had a fierce need to please and I’ve taken my worth from how and who I pleased.  In some ways this made me a good partner, a good team member, but I need to be able to look in clear water and see my own reflection and decide for myself if that is pleasing.  

One more thing that will take time and patience.