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.