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.

So, my September task list (just a bit less demanding than my yearly resolutions) includes writing every day with my mental note of writing as close to as soon as I get up in the morning as I can.  This morning I woke up at 5:50 and it is now 8:13.  I forgive the first hour plus for getting Julia off to school, but then after that I had to walk the dog, water the back garden, check and write emails, clean up a few dishes, and dither a bit before I am willing to get down to the write.

So, one thing I notice about meditation and about writing is that it is necessary to form the habit by doing it over and over  but repetition doesn’t necessarily make it easier.  There are days when I sit on my cushion and feel like I’ve never meditated in my life and too many days when my writing is so awkward that I wonder if English is my second language.  The thought that saves me these days and has for the past few months is that “practice” is the coming back to the breath, the center.  The act of coming back over and over, even every few seconds is the practice.

And so, once again, I return to filling a quota of words for the day.  Gosh, now I feel like Natalie Goldberg.  Practice = writing?  I am not sure.  But here is a day one.

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.

Started on 28 June 2013

It is so damned hard to let go of comparison, grades and measurements.  Julia is in swimming class (every day for the last two weeks which is a great format for her) and today is the last day of this session.  She will get a “report card” which will recommend whether she stay in the current level or move on to the next level.  I have sworn to myself and others up and down that I don’t care in the least what level she is in, but this morning, I cannot help but wish hard that she is allowed to advance.  I lean into that competitive, yearning-for-her-to-be-typical feeling and breathe.  So, so, so much to learn.

Update:  Julia did move from level 3 to 4 and I am so pleased.  Going into the class, she knew how to do an overwhelming number of the listed tasks.  Her challenge was listening and doing what she was told when she was told without the help of an aide.  With 3-4 kids in the class, she was able to do that.  She is proud of herself for her work.  I don’t think the move from one level to the next impresses her at all.  I hope that she doesn’t need to take pride in external measures of success for a long time.  Or rather, be proud of herself for the work and the reward but not be dependent on the external reward.  Wish that her mother was more that way.

This is the last week of intensive therapy.  We have therapy today and tomorrow and then it will be only twice a week at the clinic.  I am holding my breath -- even though I can really use breathing into that one as well.  

Some week highlights, which were shiny indeed:

Julia told a joke at the end of last week.  Her first!  “what is a tree’s favorite soda?”  “Root beer.”  She doesn’t quite get it herself but she knows that it amuses people when she tells it.  There are two things working her -- at least two -- people with autism are not known for their sense of humor and yet Julia wants to tell jokes (ok, a joke at this point).  Wanting to tell a joke to friends is a very social yearning.  Julia was pleased to tell the joke and pleased that her friends liked it.  Julia has many, many steps on the social ladder and she climbed one more.

We had a party on Monday to mark the end of intensive therapy.  We had pizza and fruit and a dinosaur cake (chocolate with blue icing made by Julia and her therapists and decorated by Julia) and iced tea with dino cool aide ice cubes.  Julia and her therapists painted together.  It was a canvas that needs to be finished.  Julia sketched in pencil as a guide for everyone to paint.  She sketched as if she had been doing it forever.  Like sketching for a painting was a skill just stored inside of her for retrieval at the appropriate time.  After painting, we all went for a bike ride -- all of us!  No one ran behind Julia.  She took two small spills but was able to get up and get going.  She is still not as steady as she needs to be and she still needs to be reminded to keep her eyes on the road and to avoid distraction.  She needs to be reminded to use her brakes.  Last year at the time, she took the lose the training wheels course and finished being barely able to ride with no confidence in her ability.  She has come very far.  

We are sitting on a chaise at the swimming pool.  We have an hour between Julia’s lesson and my water aerobics class.  It was a brilliant blue sky day a half hour ago.  Not there are very grey cloud making their way across the sky.  I can’t be sure the rain is inevitable, so for now we hold our ground.  And just to note, I love sitting on the side of the pool typing.  Absolutely no guilt about what I should be doing.  Crazy thing is that I can do the same thing at home.  And I don’t do it!

The clouds keep moving.  Leaves are turning over and the breeze is much cooler than before.  Still, no rain.

The dentist did sealants on Julia’s four back teeth on Tuesday.  The dentist has warned me that if Julia couldn’t do it -- sit still with the mouth open and her tongue -- for a bit more than a minute, that they would try to redo it but if it failed we would still be charged.  I don’t like the dentist.  I do not get a “can do” vibe at that office.  Julia was able to do it.  We did some prep before even as far as putting cotton in her mouth -- under her lips -- to see how it felt to have something in her mouth that she was not eating.   As we left the dentist office, I felt  a hush in the waiting room and many stares.  Julia was her exuberant self.  She talked to kids who were on the video games and pondered, out loud, her “prize” choice.  She was in a great mood and doing very well.    Still, there were stares and quiet as we went through.  The people at the desk do not engage Julia.    Nothing untoward is ever said.  It is just a feeling.  A feeling of exclusion.  Elusive and not specific, but palpable.  

An experience of my own:  Last week, when I wrote about dreaming of David, I did not paint the entire picture.  The day before the dream, I went to a Quest dinner and integration group.  Our assignment was to “tell our story” and although I had not planned to do it, there was time for “one more”  when those who had planned to do it were finished and I volunteered.  I had a metaphor that I had thought of right soon after I heard about the assignment.  

Julia had wanted to know more about how a caterpillar transforms to a butterfly and when we looked it up, I found out that in the chrysalis the former caterpillar turns into mush before it reforms as a butterfly.  My point of reference was the instant that the former caterpillar brain, realizing that it was not what it had been and had no idea what it would become, observes his situation and utters a bemused, “Shit.” 

And then, I told my story.  How life was so ordinary before David’s death -- growing up, theater, David, Cheshire, law -- I was invested in the ordinary path, but after David died I could not be.  I had to change and I found new passions with more questions than answers.  And how I’ve lived that “Shit” moment for a long time.  It seems like the longest times ever, and it seems to have gone by in the blink of the eye.

Telling my story, what I told was no tale of woe, tragedy and despair.  It was  -- and I don’t mean to make more of this than it was -- amusing, interesting, full of humor with possibly a dose of irony.  It was not the story of one of the walking wounded.  This telling took my very much by surprise.

After my story, Trudy did a closing reading:

Enough. These few words are enough.

If not these words, this breath.

If not this breath, this sitting here.

This opening to the life

we have refused

again and again

until now.

Until now

It took me until I was home to take in how the telling and then the listening struck me.  I pushed it away until morning and wrote the following to my integration group:

_____________________

This was an interesting choice for a closing last night and reading it again this morning prompts me to want to talk about those strings running through life that shimmer in the light every so often.  I don't believe that a god or the universe or some great power micromanages our lives, but I am pulled up short with surprise and wonder at the synchronicity that occur.

I might feel a bit vulnerable and exposed, sending this out to all of you, but then after last night, how can I even go there?

Last night, listening to Trudy's closing reading, I wanted to share this piece that I wrote for David's memorial a few weeks shy of three years ago.  I put that desire away and out it popped again this morning.  The image in my head is of the me of three years ago standing behind the pulpit and the me of last night sitting a few feet away. (Our group that night met in the auditorium of the church and that night, I sat facing the pulpit less than a dozen feet from it.) Listening to ourselves.  To each other.  Time bending and losing its linear shape.

And so, 

I’ve been looking at this blank page for two day trying to impress upon it something that would tell you of my David.  Something very special, something secret, something so apparent  that some of you would yawn.  

I started with Dayeinu which is a Hebrew word that means "enough."  At Passover seders we sing about each successive step of God's provision for the Israelites and we sing a chorus of Dayeinu -- that would have been enough.  I could do that chant but in the end I could not/ cannot feel Dayeinu.  It was not enough.  David and I wanted more.  And I am having trouble with Dayeinu.

Just before David and I married, we were reading a lot of Rainer Marie Rilke.  We were caught up in his book Love and other difficulties.  In particular, this piece:

The point of marriage is not to create a quick commonality by tearing down all boundaries; on the contrary, a good marriage is one in which each partner appoints the other to be the guardian of his solitude . . . . A merging of two people is an impossibility. . .  But once the realization is accepted that even between the closest people infinite distances exist, a marvelous living side-by-side can grow up for them, if they succeed in loving the expanse between them.

In our vows, we promised to guard each other’s solitude and  to witness transformation, reconfiguration, melting into nothing, and springing to life from the phoenix fire.  I had the front row seat to stories, refinished windows, hagadas, a pond, acceptances and rejections, plays, plumbing, novels, putenesca sauce, songs, tears, speeches, silence, articles, and the silliest man I have ever met.

In the expanse between us, we made our life and that was not always easy.  We were both passionate, both sure we were right, neither one willing to give in for the sake of peace.  Well, maybe David was sometimes.  David gave me the first unconditional love that I ever knew.  Our love honed the pointy ego places that could have kept us apart.  His soft voice quieted my shrill; his silences encouraged my talking; his perseverance inspired every uphill battle that I fight. And there was a moment, more than 35 years ago, when my eyes met his, over the hood of a beat up Dodge Dart, that was magic.  And slipping my hand into his made everything in my world alright.  The love, the devotion, the complete attention of one person is so much more than enough.   So much more than I had any right to expect.   Dayeinu.

Thank you for listening last night and this entire year.  Thank you for telling your stories, checking in and out, for hugs at the end of group, and smiles and words when we see each other outside of our Quest activities.  I didn't know what Quest was going to do for me; I just knew I wanted to do it.  I am humbled by the wisdom of the simple direction to "trust the process."  

_________________

The night after I wrote that to my group, I had the dream, that very read experience, of snuggling in bed with David.  

We are in the days before David’s death day.  No, I do not fall into the pit of darkness and self-pity when I “go there,” go to the blogging of the days after he was taken to the hospital for the second time.  I can read it with some distance.  I read it looking for cues.  I think I see some but whether I do or not could be refuted by someone who knows better.  And even if there are obvious clues that David needed some other treatment or care, it matters very little.  But I still read, looking for answers to painful questions.

And then I realize that it was last year around this time, again, days before David’s death anniversary that I woke up one day feeling for the first time in two years that I was myself again.  That first breath of air without pain attached.  This painful time also holds magic for me.

There is a little girl, a little one adopted from China, who had a heart transplant on Monday.  Her body is rejecting the new heart and there are all sorts of heroic efforts underway to save her.  A temporary mechanical heart, life support that cannot be turned off, lots of drugs, and the top of the list for another heart.  I read each update and say private prayers for this child.  I cannot comment like so many, many others because I do not see much hope.  David had an 80% survival rate for the first year.  I don’t know what this child had before transplant, but the percentage has most certainly gone down as the days have passed.  Even a 20% chance of death is very, very high.  I do not want this child to die, I want her to defy the odds and battle her way back to life, but the miracle, the happy ending escapes my view.  The miracle, in my view, is the extra day, the hour, another breath, the prayers and blessings around her now.  It is never enough, but it is all that is enough.

Life is fragile. The flutter of a butterfly’s wing.  It leaves the body in an instant.  We hold to an almost certain belief in our strength, in divine intervention or personal destiny.  All of that is over in the time between the out breath and the next in breath that never comes.  

Errant thoughts rushing in mighty circles wake me and finally drive me from bed and onto the screen.  It is just after 4.  Isn’t this why I meditate -- to get some control of my mind instead of allowing the wild horses driving my thoughts to pull me this way and that?  Even my musings on the dilemma just get added into the spin.

So, thoughts.  I make a list and then feel depressed by the list.  I need to write it all out and will have to come back to this during the day, over and over to finish it.  Finish emptying my swirling brain.

Julia’s big challenge these days continues to be about being social.  All the social stories, practice conversations and app exercises don’t act quickly enough to satisfy me.  And that is really what it is -- satisfying me.  Julia doesn’t ignore the world but responds and reacts to it in her own time.  When she is engaged in some interest of hers, she is not interested in talking to or responding to greetings from friends or friendly strangers, directions from her mother (and others) or what is going on around her.  “What did I just say?”  I will ask her after she has “Yes, mom”-ed me for minutes on end.  Her “yes, mom”-s are reflexive and do not mean that she had taken in what I’ve said and certainly not that she intends to act on any question or demand or instruction.  

This is hard for me.  It is not hard for her but at some point, it becomes confusing when I or some other speaker expects that Julia has heard the question or demand or instruction, and expects response.  

It is also hard on me and eventually on her when she does not notice the simple greetings of friends and neighbors passing by.  I’ve noticed that two of my neighbors say “hi” to her when we wait at the bus stop.  They say hi to most of the kids waiting there.  Julia is the oldest child at the bus stop and she is the one most frequently not responding.  I worry about the day that even the best intended people just stop saying hi to her.

Julia is not stupid, uncaring or unfriendly, but her interest in what she is doing -- even if it seems she is doing nothing -- trumps anything input from outside of herself.

Then, there is the reverse.  Julia is hyper-interested in talking to me when I am talking to someone else, on the phone, doing business, watching a movie or reading a book.  Yes, all children do this when they are 2 or 4.  Rude children do it when they are 8 and they have not been gently taught how to get attention in socially appropriate ways.  People with autism . . . And it is hard to live with sometimes.  No, hard to live with all of the time.  

Julia’s interest in communication can and often is so very inappropriate with strangers.  Also, with friends but friends put up with it.  Julia catches the eye of other customers in the supermarket or big box store.  She “flirts,” greets people and then immediately launches into what is foremost on her mind.  She is totally unaware of who is appropriate to talk to and who is not, of the appetite of a stranger for why some dinosaur became extinct 65 million years ago and of how appropriate it is to point out the flaws in a stranger.  Most disarming is that when Julia begins to talk, she looks and sounds very typical.  At least, typical enough to draw most people in.  Then, they are very much confused by her.

And I am left trying to navigate Julia’s communication -- trying to get her attention for myself or a friend, or attempting to deflect her attention or prompting her into appropriate conversation.  Perhaps right now, with intensive therapy ending in two weeks, I am just very scared that I will not be able to give her the guidance she needs to learn more about communication, and I am exhausted trying to keep her protected from unkind people and in good graces with those who have been kind to her.  

My primary goal this summer was, no, no, is to not do therapy.  I want us to live.  Only live.  Julia has been in intensive therapy -- almost or mostly 30 hrs a week for 4 years.  I’ve resolved to do very little therapy this summer - 7 hours in July, none in August.  Today, on the first day of summer vacation (when we still have two weeks of intensive left) I’ve woken up burning with ideas of what I should be doing next for Julia.  Perhaps I should be writing social stories about talking to friends and strangers.  Perhaps we should be making a refrigerator calendar to count down the days until therapy ends.  Perhaps I should be previewing her reading and composing multiple choice questions for each day’s reading.  Perhaps I shouldn’t let her reading the first Narnia book because she will not understand a lot of it.  Perhaps  . . . perhaps. . . perhaps . . . perhaps I should remember my intention for the summer.  

But and just to be totally clear, I am terrified, completely terrified of letting therapy and education go for even a short time.  When Cheshire was a kid, we did nothing about education during the summer.  She read, sometimes from a book list, and one year we did Kumon math for her to learn her facts, but I don’t remember ever organizing an educational plan for her.  I’ve done one of those for Julia for longer than our therapy time.  It is very hard to let that go.

Another swirling morning idea is that I worry that if I don’t act on my education/therapy ideas, I will lose them, forget about them, etc.  Probably silly.  Why do I worry about things like this?

I went to a meditation session (umm, don’t know the right word for it) last night.  We “sat” for 45 minutes and then looked at slides of a member’s trip to Burma.  The more usual schedule is to sit  for the 45 minutes and then listen to a short reading and have a discussion.  Someone I know who was there asked me whether I could sit for 45 minutes and I said that I could even though I don’t usually sit for so long.  I am fine with 20-30 minutes, 45 is still pushing it.  I’d say the last half was much more distracted than the first half but I did it.

By the time I got home, I had for a few minutes before going to bed, an inkling of peace.  Not happiness, but peace.  I felt for that short time that so much of what I worry about just didn’t matter in the least.  If Julia goes not further than she is today, she can live with me for the rest of my life and I do have good life insurance for her.  If I never get to promote mindfulness for families with kids with special health care needs, that too will be ok.  I did not need to be concerned about what will happen, I only needed to do the work.  I could let go of planning like letting go of demons.

Then this morning, it all came flooding back and again I was the worrier, the planner, she who can second guess every movement and thought.  Hard to hold onto the blessed peace of moving in the flow.  Perhaps hard not to hold on to anything but to move with the flow.

And now some ego spilling.  At some point, writing a blog, I had readers.  Not enough hits a day to warrant any kind of notoriety, but a steady trickle of family and friends visiting and sometimes commenting.  I enjoyed that.  Part of the enjoyment came from feeling worthwhile -- I was explaining my experience and people were identifying with it or being slightly educated by it or enjoyed the writing.  It was a form of communication when there was no one to talk to.  My ego also enjoy it.

Now, not so much.

Thinking about the not so much, and by that I mean that my blog is no longer read by many people, and certainly not on a regular basis.  I come up with reasons.  Of course, to begin with, my bottom line has always been that I blog for myself.  And that is/was true to a point.  I also blog to be read.  As rather self-centered as that sounds, I want to be read.  

So, I come up with reasons:

I am just not a good writer.  Oh, that hurts.  I so much want to be a good writer.  In my wildest dreams, some publisher stumbles upon my blog and offers to put it in book form, someone options it for a movie and I get rich simply from writing down my life.  That’s my wildest dream and in truth I don’t need that, but I remember one comment from someone who encouraged me to keep writing, no matter how bad or boring it was because it was good therapy for me.  Ok, the commenter said it in much more polite terms, but that comment hurt.

Another reason or two: When my writing was centered primarily on a particularly subject -- adoption, autism, David’s health or my grief -- it drew a particular crowd.  Sometimes the crowd was simply friends and relatives, sometimes it was parts of the adoption community who knew me from my postings on adoption yahoo boards or facebook.  But my topics have become interwoven, muddled and I moan a lot.  I have lost all sight of my audience.  I would try to describe my audience right now but how many paragraphs would that take?  My writing about adoption is not always merry and the events I talk about are not easily celebrated.  My writing about autism is too personal and not always positive or enlightening and never political.  I’ve stopped posting cute pictures -- I still post pictures but on a related blog that is not as easy to find.  And grieving takes so %$^## long and even I can get bored writing about another bout of loneliness.  I comment here that all the fiction and even memoirs about grieving work it out in a year.  I hypothesize that a year is how long any non-grieving person can allow for the trip to hell and back.  Everyone wants to believe that a year is long enough, maybe even too long to be swimming in doubt and tears. “Just get on with it” can echo in my ears all too often.  And I’ve changed blogs so I am not as easy to find.  I’ve tried separating topics and that has not worked for me at all.  

This is what I feel like it is right now (which may change in 5 minutes).  I’ve always journaled or blogged to pour out my thoughts and feelings.  Most often, in the past, the mere exercise of pouring out worked out some of the tangles.  Right now and for awhile, in the midst of my ever continuing transformation from basically happy part of a couple with a stable life to a truly single person with a child with autism, my journaling rarely explains anything to me.  I guess it hasn’t for a long time and being read for other people worked as a stand in for personal enlightenment and growth.  All my “why’s” have deserted me.

Yesterday was father’s day and I had a hard time.  My primary means of dealing with it was to ignore it.  And that worked during the fist part of the day but as soon as we got to church, our minister opened the service with a hearty wish for all fathers present and thought of.  All I have is fathers thought of and the memory of fathers and of losing everyone and being left alone.  I don’t want to remember even the good times and certainly not the missing and loneliness.  I didn’t want any touch with father’s day at all, but to do that yesterday I would have had to hide in a cave, not seen or talked to anyone, and not tuned into Facebook.  Really, I can’t stand the celebration of family on Facebook.  Happy family pictures from years ago scanned in.  Heart felt testimonials to loved ones and children climbing all over daddies and grandpas.

I have become the grinch.  

I am not happier seeing couples holding hands.  Or families with typical children eating ice cream.  

Last meditation class on Tuesday.  I’ve learned a good deal in the last 8 weeks, much of the time it was putting names to practices that I had used previously or stumbled upon in another life.  Not that I was doing most of the practices in the most advantageous manner -- trying to stay away from saying that I did them incorrectly or, worse yet, wrong.  This was an experience of deepening and lessons.  I learned that I really want to have a meditation community and want to continue learning.  I learned how good it feels to take my inclinations seriously.  Following bliss  and all that is just as good as it is billed to be.  I might excuse myself for not always following my “bliss,” citing practical reasons of middle class living and “blaming” David, as if he would have rolled his eyes and disapproved of this kind of bliss.  Possibly, maybe even probably, his eyes would have rolled, but I could have insisted.  Surely, it would have not been the first thing I insisted upon and which later he would have embraced enthusiastically.  For so many things that was out pattern.  What would it be like to live with someone who brought the “crazy” ideas home? 

For a meditation group, there are a plethora of groups in town -- this is Madison after all -- that I could join or casually drop in on.  I can begin with the three groups that are held at FUS, two of which are taught be people that I know from Quest.  I will need to find childcare no matter when I begin -- it does  seem that most meditation groups meet in the evening or so early in the morning that it would conflict with Julia getting on the school bus.  

Yesterday morning, I went to a Japanese Crane meditation group right after Julia got on the bus.  I’ve been doing this form of Chi Gong for more than a year now -- a noon time group at FUS.  That group only meets during the school year and this early morning meeting during the summer and is a combination of two groups that meet at church.  I’ve asked if I can bring Julia next week . I have the group’s approval, but I still have to get Julia up and out of the house by 7:30.  

Julia may or may not be reacting to all the transitions that are upcoming.  She does not acknowledge all of it.  Today is the last day of school and she is excited for summer.  She has not talked about leaving her teacher of two years or the everyday therapists who have done her  intensive therapy which ends at the end of June.  One of our therapists has already left and Julia avoided any good-bye.  She may be doing this intentionally or she may not understand a thing.  It is about time and there are still gaps in her understanding about time.

Sometimes she recedes into her own world which she is faced with concepts that she does not understand.  She can be reached by asking her again and again to re-join our reality, but she usually answers in a perfunctory manner and very much off topic.

Then sometimes she is spot on clear.  The other night, just before dinner, she fooled around when I asked her to put on shoes so that we could walk the dog.  I asked her a few times.  I was in the kitchen and she was in the living room.  I warned her that if I came into the living room and caught her not putting on her shoes there would be consequences.  I got a lot of “yes, mom’s” from her.  I went in, she was reading without her shoes on.  She lost dinner immediately and went straight to bed.  She first refused to do it, but I marched her upstairs and she was able to do as I asked.  She was teary when we talked about it once she was tucked up in bed.  I gave her hugs and kisses in bed, but there was no consequence change happening.  The spot on clear moment was when she asked me if I liked her and if I was going to send her back to China.  She was so (insert appropriate swear word for emphasis) clear.  I had an open channel to her mind at that moment, no confusion, no need to redirect, no need for an aide to interpret directions.  Oh, if only I could reach inside that child and put that spot on clarity front and center. 

She is still such a mystery at times.  

This morning, the last day of school, was the school talent show.  Many of the classes work on a dance to perform for the whole school and a smattering of parents crowded in the back of the cafeteria.  Julia did not make it onto the stage with her class in third grade and was not a full participant last year, but today, it was incredible!  She was enthusiastic and very present.  She kept up with her class.  She was not perfect but she was not the only one.  And she was focused.  To watch her today is to know her potential.  To know that she will do art.  To know that she will have a life with some or all of the pleasures and pain that we all have.  

Such hope from a lip sink dance performance.  

So I’ve taken time to write this morning.

Sitting in Barrique’s waiting for a FUS friend to start camp activity planning.  I am incredibly early and have work that I can do, including this writing which I have not been thinking of as work.  The cafe is crowded but there are plenty of people sitting and typing at laptops, so I have no worry about taking up space for too long a time.  Than, who walks in to meet someone but my big hero and admitted crush.  Yes, I am finally admitting to this crush.  I am on the other side of the room and so cannot eavesdrop or even watch him without moving (which I will not do).  This is not a stomach churning crush -- when will I have one of those again?  It would probably be very healthy to have,  but thinking of  some man as interesting, smart and someone I would love to get to know is not a bad start.  This I say because truthfully, I have not had even a passing interest intellectual or otherwise in the last three years in a man.   Truth be told, I would rather that this crush was my teacher than a Saturday night date, but if I can long for a teacher, maybe a date is not far behind.

Oh, interest in the opposite sex is more than crazy at my age.  Possibly at any age, but youthful libido helped immensely with finding a partner or pursuing a social life.  

Could I write my novel sitting in cafes?  Is it a novel that I could be writing.  Something else?  

I am ready for school to be over for the year and for summer to begin.  I have some ambivalence about vacationing in August but I am ready for days at the pool and slow mornings.

I posted a picture on FaceBook of Julia flying a kite -- something she did last weekend when we went to a birthday party at a park.  She worked so hard to figure it out -- it was a breezy but not windy day and it would have been a challenge for anyone trying to fly.  She persisted and she succeeded and I was very proud of her.  I posted pictures on the photo blog and also on Facebook with those feelings.  But as I've thought about it today and as friends have "liked" or commented about the picture, there was a deep sense of sadness that came over me.  Other parents post football or soccer wins, academic awards, dance recital pictures and graduation and first job news.  I cannot, and maybe never will for Julia.

And there I was, landing right in the midst of not-in-the-present thinking.  What am I worrying about?  My lack of bragging opportunities?  Exposing Julia's untypical development? My fears for Julia's future?  Some concern that our friends will not accept us as we are?  Looking over the list and even having a hard time coming up with the list, I perceive that it is amorphous worry.  Just living in the land of worry that circles around the stress and anxiety of raising a child with special needs.  And such worry serves absolutely no one or nothing.  Concern, planning, looking with a realistic eye is different from worry.  It will take years of serious practice for me to alter this gut reaction to worry.  But I see it, see is a little quicker than I have in the past.  Therein is progress.

There is change.  For both of us.

When Julia does some bad behavior -- mostly these days not listening in a timely fashion -- I immediately give her consequences -- like, in the car going to therapy this morning, she was supposed to eat breakfast.  Instead, she played with her iPad and when we got to IDS clinic, she had not touched her strawberries.  And so, no iPad for the rest of the day.  She is angry but contains herself.  She apologizes and tells me she will try again next time.  When she gets out of the car, she wants to hug me.  We had two instances of consequences this morning before we got to clinic but no angry words. I know she is getting angry because she almost immediately forgets why there were consequences.  Her concentration is completely on her loss.  I ask her what happened (lost the iPad for the day) and why (did not eat before playing).  I still need to connect the consequences with the reason for them.  She will learn eventually, hopefully before she is 35.  

I am at a meditation retreat today -- the day-long retreat that is part of the MBSR course.  There will be three or four classes here today and the room is lined with chairs.  I feel a bit tentative but more sure of myself than usual -- I feel like I am part of this world although I would be hard pressed to define what I really mean by “this world.”  I have the sense of belonging.  

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.

Elliott wrote that “April is the cruelest month” and I sure hope so.  At least for the year.  It’s been pretty cruel so far and we’re only half way through.

A few days ago, I drove past the bay to avoid some Park Street traffic.  I have not be walking near the bay because of the cold (and it is still cold) and I am tired of the ice.  The first thing I noticed was the bobbing ducks, then the lack of ice, then the almost white capped waves.  Even a short glance at those ducks promised to make me seasick, the waves pretty fierce and those ducks all bobbing furiously.  I felt the coming of spring -- still coming, not here and the resiliency of those ducks who could endure the freezing water and the motion of the bay.  I struggle with what those ducks do with little perceived effort.

Mid-April and the reason to write here are piling up.  The will, for some reason, diminishes with each day that passes.  And writing, as soon as I put fingers to the keyboard or pen to paper, is a primary practice for me.  I question how I can ignore such basic knowledge and is deep within me.  Of course, I also know deep in my soul that I should exercise regularly and eat wisely.  

I have the capacity to ignore much of the wisdom stored in my soul. 

Yesterday, I went to the last of 5 meditation classes, “Buddhism in context.” 

After five weeks I have some understanding of dukkha -- suffering -- and that all life has it although it still seems to me that I have more than my share.  I have some understanding of second arrows -- the suffering we add to the actual suffering of life, sometimes called regret or guilt.  Finally, I have listened to the lists and lists to help one who practices meditation -- some of which I can understand, some are too much to hold in my head during the teaching let alone when I am “on the cushion” -- kinda’ cool expression for sitting and meditating. As it was a first class, so much of the teaching have rinsed through me.  I have caught small bits and pieces and for the most part I remain the unlearned student.  There was advice given yesterday: Let the teachings come to you.  I have no choice.  

It has been a revelation and a “duh” that  I’ve finally grasped a bit of the importance of meditating in community.  I ran to church and became a much more involved Unitarian after David died.  Sometimes feeling that there was no way that I was going to fit in but insisting on finding community in the place that insisted on preaching community.  And I have found some community at church but still did not grasp the benefit of spiritual practice in community.  But getting some of it through our Quest activities and now this class under my belt, I feel benefit beyond a simple community.  I am not articulate about this yet, but it is palpable. 

On Tuesday, I begin my eight week Meditation Based Stressed Reduction class at UW.  I signed up for this course as a way to gain credibility in the research world, but now it is much more.  I do want to learn more about contemplative practice for its own sake, for my sake.  I am very happy to have started with a buddhist base, not that I am looking for a new religion but I know that the MBSR course washes away the spirituality of meditation so that it can appeal to a broader audience of students.  I, however, like the spirituality and need the science.  I am excited to begin.

I am exhausted -- not always physically, although my nighttime sleep is regularly punctuated with time awake and so it is rare that I get a full night’s sleep.  It is an exhaustion of the soul and my second arrow is that I fear my life will never change and that I will spend the rest of living this life weary.  

Awhile back I was talking to someone about adult service for the disabled and the person casually said, “When you daughter applies for services . . . “  The words were a punch in the gut.  The person had no intention of hurting me, and truly there was no reason not to use Julia as an example during that conversation, but suggesting that Julia will need adult services for the disabled when she is an adult hurt badly.  It may sound crazy but I hold onto a belief that she will be “normal,” “typical” or at least be able to support herself with employment and have friends, even a partner.  I did not know how invested I was in that belief.  Evidently greatly no matter how irrational that dream is.

Julia is still asleep beside me this morning -- Sunday is the only day we are in bed late.  She is the source of so much of the dukkha in my life.  Truth and sadness.  Last Monday, Julia peed in the car again. She peed because she would rather play with her iPad than mind her body.  She couldn’t wait to jump in the car when we were going to do errands, do food shopping and then go to speech therapy.  She did not go to the bathroom before we left because she wanted to go into the car and play with the iPad.  She never asked to go to the bathroom at the various stores we were in and just before speech, I had enough time to run into the food coop to pick up tofu.  Julia asked to wait in the car.  When I came back to the car she was still on the iPad and she had peed in the seat.  I had to stop at the rehab clinic and cancel speech, then home where the car needed to be cleaned out immediately and then go to the car wash for a bio wash that cost $139.00.

The peeing made me angry and the anger sat with me for an entire week.  Towards the end of the week, I saw clearly how much the anger had to do with the loss of control. I have been holding knowledge without acting on it -- that her tioleting habits have deteriorated badly and I’ve lived just hoping they would get better with time.  Nothing that Julia does gets better with time without much teaching and practice.  Julia needs to be reminded to pee and poop even when she is potty dancing.  And it isn’t just when she is immersed in compelling activities.  It is everything -- emptying the dishwasher or putting toys away.  And I am terrified that my life will be nothing nothing but taking care of her.  Forever.  Now with her period I have another another layer of responsibility.  “Change your pad, go to the bathroom.”  Remind, remind, remind.  More and more care for someone who can’t even carry on a decent conversation.  Forever.  Another second arrow because I do not know that this is true.  It is fear nothing else and the truth is that there is little I have control of.  Why let this unknown punctuate my days? 

Opening the blinds this morning, I spy the snow on the ground.  There were weather reports of a spring-like day today and the updated report is that it will be warm for a short time today, but the wintery mix of snow, sleet and rain will only turn to rain and not allow for any gardening.  Gardening is my own true practice.  I have not done it as a practice, as anything more than a struggle for three years.  I am hopeful for this year but the practice needs the spring and it is not here yet.   

The dear son of a dear friend is very sick.  It scares me.  I feel very far away and unable to do anything.  I try to hold my “what ifs” at bay, but they come crowding in all too often.    We have a history, this friend and I, and the history makes it hard to be optimistic.

I know that there are many things to be grateful for, still I whine:  I placed an amazon order for some birthday gifts for Cheshire.  I had a few missteps but when I finally got to the part that would allow me to write a greeting, I broke down in sobs.  The sadness of missing David, of our life together and as a family, of all of the small steps of raising Cheshire, of the joys of raising Cheshire, of knowing that this family life is irrevocably over jumps out at me.  33 months and it can still be so raw.  I know I am not through the tunnel of grief completely, but I did not know how close the tears can still be.

I awoke this morning with the idea the no one does what I want to do.  No one indulges me. I almost laughed at myself for such a thought.  It was so childlike and so utterly selfish.  Is that what having a partner means?  Indulgence?  Not that David, or any partner, does what the other wants all the time, but sometimes, I got or expected to get my way.  Crazy, selfish, considered or wise, David catered to my whims and wants sometimes.  And that was delightful.  The immediacy of a partner is a blessing and still, still, still, I miss it. 

And so, this is April so far.  I hear NPR stories about cherry blossoms in DC or dandelions’ first bloom, and it is as if those word are personal attacks.  I need spring.

Long doc appointment with Julia this morning.  Finally, an appointment with an orthopedic specialist.  After x-rays and physical exam.  Julia’s turn in when she walks is due to a twisted thigh bone and low muscle tone which is consistent with her PDD diagnosis.   We will do some physical therapy but there will probably not be much change.  Getting her involved with physical activity is the best thing for low muscle tone.  

I am too tired today to figure out what we will do.

Speech therapy today - testing her on W questions.  She did “better”, translated that as more appropriate than she did 2 years ago, but the progress is small and slow.  We will focus more on “when” which is most helpful because that gets to time, calendars, days, seasons, months, years, etc.  She needs memory to work on this.  Her memory is so selective.  Is this a “muscle” to be strengthened?

Being sick, I sleep between appointments, put some of the soup I made yesterday into a pot for our supper, and watch a movie with Julia before her therapist comes over.  Drinking water and tea.  Trying hard not to demand anything of myself.  Even thought.  This is a time when I could plunge into the depths of despair for no other reason but that I don’t feel like doing anything today.  

Listening to Pema Choldron lecturing on “The places that scare you.”  Feeling I could sink into some other place.  Wondering if that is only today, which it might be.  

Ok, enough!  I need a nap.

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.