Weekend wedding in Berkeley.  Julia and I spent four days on the west coast.  It was the wedding of a cousin -- second or so.  This is someone who David has been in touch with since we were all young adults.  When I was at Sarah Lawrence, David went to Berkeley to explore the film scene.  Rita put him up for awhile and they began a friendship that lasted until his death.  The cousin, Rita, was born in Australia to immigrants from Germany via England for a generation or so.  Her family moved to the US when she was a young child but she held onto ties from her first home.  Added to that, the is another Australian cousin who has always been wild about the family tree since he was a young man.  He, Scott, has travelled extensively and makes a point of always going out of his way to visit any bit of family where ever he goes.  And he keep in touch.  

Many, many people have been in some kind of touch for years and Facebook has enabled this far flung group to blossom.  Something to note: common language has really helped this blossoming.  I don’t think I could do this with my family and certainly not with any of Julia’s birth family even it is was possible to find them.

Rita and Joel’s wedding presented a reason for many of us to gather.  Wedding guests flew in from all over the US, from England and from Australia.  I decided to make the trip, David’s stand in, curious to meet people only heard of and hopeful that being an in-law, now widow, would not exclude me completely.

It was quite unlike anything that I ever experienced before.  There was a pre-wedding dinner on Friday evening for out-of-towners followed by the wedding on Saturday and brunch on Sunday morning.  I came knowing only Rita, the bride, and Ron and Linda, one of David’s first cousins and his wife.  It was exciting, wonderful and very nice to meet so many new relatives.  Now we are all Facebook friends!  

There were challenges for me.  This is an older crowd.  People with grown children who have the time and inclination to travel for a far away weekend party.  It was uncomfortable at times to have a child with me, to have a child with significant challenges with me.  Julia is no Cheshire who as the only child at many gatherings worked the room and charmed crusty old artists.  Many times Julia did not even respond when people went out of their way to talk to her -- of course, this is not uncommon for her.  The parties were in small, sometimes precious, spaces, lots of noise, no kid diversions apart from what she carried, and generally just lots of sitting and talking.  Considering all, she did well but the two of us did not completely melt into the crowd.  

And, although everyone was very kind, at times I could not help but feel that it was not really my family and that there was a very large hole beside me.  No one made me feel that, I felt the separation.  I was with all of those people, meeting family that David had only begun to be interested in in the last year of his life.  David was not part of so much of the life that I now lead in Madison, and in Berkeley, I was meeting people who only know of David as a distant cousin who died but still, each time I had to explain my membership in reference to him, he was present, then absent.  I was still the amputee. 

And then there was my anxiety.  I was in a place that I’ve only rarely visited and really had no idea of how to get around.  Because the wedding parties took up most of the time, I did not plan for extra time or visiting museums or doing outdoor things.  I did not have the heightened ambivalence that I suffered from during summer vacation but the result was similar -- just not planning much.  And so, I became very anxious about what I had not planned.  I had addresses and phone numbers, but I did not have a good lay of the land.  To my credit, I was flexible -- when I found that I really needed a car to get around I rented one on Saturday morning.  When we were finished with wedding partying on Sunday, Julia and I went hiking in a park and then to SF Chinatown on the BART.  But throughout the weekend, I felt like I could jump out of my skin.  I was scared, nervous about each part of the days (many what if’s).  There was a sleepless night.  That, after a day of a lot of physical activity, including walking up and down the SF hills (shades of La Paz).  As I lay awake, I tried breathing into the uneasy feelings of the weekend and realized how hard the changes that travel bring were to me have been making me feel.  (OY, this is not articulate)  Travel is something that I love to do and that I always lament not doing more of -- held back by Julia or circumstance or economics -- but I am really, very, very afraid of diving into the unknown, venturing into places that I do not know or understand.  I think the last time I travelled comfortably was the England trip after David died, but now when I think of that time, I see that I was under the spell of sudden tragedy -- shock!  I was not feeling much of anything.  I was just doing.  

Do I crave that much familiarity?  Perhaps so.  Doing what is at the edge of my comfort zone be that physically as in place or intellectually as in challenging learning or perhaps spiritually, as in the long sit, is harder.  This last weekend, I felt it physically.

Why?  There is less to lose now, less to worry about pleasing, less to strive to succeed, but lots of anxiety.  I don’t think I can unravel this now, but I don’t want to back down.  I want to push beyond and dare more, not less.  There is a slight pull to acknowledge the anxiety and consider diving beneath the covers and never coming out, but that is a very small part of me.  Writing solves nothing, but I am comforted by the acknowledging.

The woman sitting behind us on the plane has two kids under 3 and a dog with her.  She has one iPad that the two boys fight over.  I’m not sure what she is going to do when one of the boys needs to pee unless they are both in diapers.  There is no time when at least one of them -- boys, dog or mom -- is making more noise than is appropriate on a crowded plane.  The dog yips and moans without a minute's peace.  When a flight attendant asks if the woman has given the dog some sort of sedative, she says she doesn't believe in drugging her dog.  The boys seem happiest when they are kicking the backs of their seats which I suppose is another behavior their mother does not believe in dealing with.  

And all I can say is I am so glad to be finished with managing airplane behavior.  Julia plays with her iPad working at very hard endgrams or her knitting nellie or a dot-to-dot. Quietly and independently.  She complains a bit about the family behind us but I remind her that it was not so long ago that she could generate at least as much disturbance as the foursome behind us.  I wonder if I handled Julia's bad behavior as badly as this woman.  I try and fail to summon up enough loving kindness to project understanding and empathy. I may need another dozen or so years on the cushion to truly feel kindly towards the bubble of activity behind me.

We have had some good weeks with school beginning, a lighter therapy schedule, soft ball games to go to and cello lessons.  

We are not doing enough physical therapy since school began, but she does ride her bike while I walk the dog.  I hope we can get back to the therapy soon.  I need to scale back my expectation of 5-6 days a week.  Perhaps 3-4.  

Cello practice is taking the cello out of its soft case, fixing the tail piece (if that’s what it is called), tightening the bow hair, sitting with legs wide apart while cradling the instrument.  We practice a bow hold and I remember how Cheshire struggled in the beginning with a proper position.  Amazing how unintuitive a loose hand is.  She bows the strings trying very hard to bow one string at a time and to get some sound that isn’t gritty and scratched.  And then, she undoes the bow and the tail piece and puts all back in the case.  It is quite wonderful really.  I know it is just the first week but I am amazed that she does not complain.  Each day amazes me.

She continues to bring home chunky books and reads them with such determination.  She shares little bits of characters or cat warfare now and again.  Clearly, she is understand the broad story line.  Together, we are reading Gregor the Overlander.  Middle school fantasy.  I would have loved it as a kid.  She has not once voiced that she misses the pictures in books.  She is the driving forced behind this literary leap.  Perhaps her great range of abilities marks her as having an almost picture perfect autistic mind.  If so, this is an amazing brain.   I, with a pretty normal sort of brain, marvel at her compelling need to explore thick books and yet forget how to carry over in addition from one day to the next.  I am so much more familiar with the brain that develops rather evenly across the board and remembers bits of everything.  

Physically journeying today.  Farther than usual and to the opposite coast.  And after an indulgent, self-involved week or so.  Last week, I bought something new to wear to the wedding -- loose, very soft pants and a top in moss green with a short, soft jacket in blues with branches and buds in blues with hints of purple.  I stumbled upon a sweat shirt which can finally, finally replace my green moleskin one.  The old one is very old.  I have retired it from the all but gardening wardrobe a number of times, but as soon as the weather is cool, I gravitate towards it and I put it on to run errands and go to therapy.  It looks awful, an observation that has been confirmed by Cheshire.  The new one is just as soft and a grey-er color.  It was on a sale rack at the very expensive nice clothes store that I frequent.  The original price was outlandishly high but at 75% off, it is affordable.  Not cheap, mind you, but the price of a Landsend sweatshirt that seems reasonable to me.  It is wonderfully comfortable and soft but in truth, it is still a sweatshirt.  I don’t expect anyone to comment on how lovely I look in it.  Well, perhaps Cheshire, and perhaps not lovely but non-ratty.

This week the weather went crazy.  We hit at least three seasons and I put my garden plans to one side.  Instead, I got a Fall facial, coming home smelling like a well baked apple pie.  I got my bangs cut -- the stylist who cuts my hair a few times a year always offers to take care of my bangs between cuts and I usually do it myself when I can’t stand them in my eyes any longer.  Today, the bangs look a great deal better than if I did them.  I had an acupuncture appointment on Thursday and  four-day fast during the week.  And I met with people three times in a week for some contemplative practice.  Also, social meetings with two friends and my spiritual companion from Quest.  And some early bed time although early to bed does not necessarily guarantee a full night’s sleep.  

This weekend we travel to Rita’s wedding and the pre- and post-wedding parties for those of us coming from far away, and next weekend, I go to the first Quest retreat of this second Quest year.  

This is the first time in a long time that I consciously spent this good deal of time really taking care of myself.  Indulging myself.  Enjoying special treatment that I am lavishing upon myself.  Doing the kind of things that I might have depended upon some gift-giver to provide for me.   This is the standing on my own two feet that goes beyond the basic of food, shelter and clothing and taking care of the kid.  This kind of time balances the work and the worry and the tears.

I see.  I see.  At least for today, I see.

September 13

Fridays the 13th were my father’s lucky days.  There were a number of reasons but the only one I can remember is that it was a Friday the 13th that he was discharged from the Navy.  I thought I better write that down before I forget that one as well as all the others.

I spent most of this beautiful morning reading for and taking the multiple choice “Safety and Infection Control (Clinical) for Non-Employee Student and Non-UWHC employees”.  It is what it says and very little of it, perhaps none, has anything to do with the clinics that I might be attending.  But regardless of the usefulness of the exam, I may remember what to do if someone comes to the clinic with active TB symptoms or has a stroke or I have to provide someone with interveneous medication.  Chances of my getting any where near such things is so small that I expect that I would rely pretty much on my common sense.  But like every other irrelevant test I’ve ever taken which includes bars and legal ethics exams, I study and take it because it gets me where I want to go.  Period.

I did disagree with one multiple choice answer and so had to retake the test four times (really just clicked on the back arrow) to guess at the “correct” answer.  It was the choice that was unclear and poorly written and the one that I actually knew something about -- Power of Attorney for Health Care decisions.  Knowledge can be very dangerous.

But doesn’t matter.  It is done.  Certificate is printed.

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.

I just wrote a very long email to Julia’s teachers about Julia’s first writing assignment.  The writing was a summary of the first chapter of Gregor the Overlander, a fantasy book that is closer to Julia’s reading level than some of the other big books she is reading.  We are reading this book together so that she can do some writing and so that I find would what she is understanding in these chapter books.  Again and again, I realize that I never questioned what Cheshire understood in any book that she read after the easiest picture books we read together.  

Anyway, the email asked for writing goals for Julia’s homework, about the methods that I used to work with her and about asking for input about working with Julia at home.  For a long time, just getting her to sit down, focus for some time, accomplish simple academic tasks has been the major goals.  Julia is able to do more than that now and I do need help shifting my focus to the academic goals.

My email was many times longer than Julia’s assignment.  Readers eyes may roll to the backs of heads, and I will not be offended in the least.  I did omit -- hard to believe I omitted anything -- the yelling and frustration and brow beating that went on two nights ago.  Julia is not easy to work with, and I continually need to grow more patience.

And right now, in the time that it took to write these few paragraphs and roam the house a bit, her speech therapist at school replied, adding her comments.  Whew, I feel more productive, less compulsive.

The day began with thunder -- gentle rolling, not huge cracks -- and rain.  Rain!  We have needed it for days and days.  I am very much aware of it because I’ve been working my garden beds and I’ve had to water every day, sometimes twice to keep newly transplanted plants from death.  I tried to wait until it was cool to dismantle and reform two of my beds and to transplant divided perennials around in the back garden, but we’ve had a rather nasty heat wave the past few days and I had no choice but to water.  

I watered enough to decide to buy a new hose -- a good hose this time, even though my old hoses, migrated from Indianapolis and were well used there as well.  The old hoses had been doctored and patched but were springing more leaks, more often.  So, it was time.  

And more on the watering of gardens: I have a favorite sprayer that I’ve also had for years which is working very well on the new hose after I put a little washer into to attachment portion.  I also had a favorite sprinkler.  Again, a relic from Indy, so at least 10 years old, maybe more.  It allowed me to manipulate the shape of the area watered and how far the spray would go.  When I was watering on Tuesday, the kids from a few houses down, the same kids who played so nicely with Julia the other day, were running through my sprinkler.  I did not mind and they were staying more on the side walk than on the lawn and there was a mom watching them, so what harm?  I went inside to get dinner on the table and after a few minutes, I heard the water hitting the front windows and screams and screeches from the kids.  I went to my front door, got a splash of water in my face -- the whole water on the window and then on my face was shocking since my favorite sprinkler was not set to do those things -- and then went to the back door and turned off the water, thinking that the kids had just moved the sprinkler and that I would put it to rights right after we ate.  When I came out after dinner, I discovered that someone has probably stepped on the sprinkler and broke it.  

And so, my thought process went like this.  My favorite sprinkler!!!  How could they do this?  Why did I let those kids run in my water?  Why didn’t the mom warn them away from the sprinkler or at least tell me that it was stepped on?  And then, a bit of outrage about how she could not make a point of telling me that they broke it and wondering whether I should march over to her house and  . . .  But then, you know, it is a 10 year old sprinkler and those two kids played with Julia the other day so very well.  Better than any other kids in this neighborhood have ever played with her (a good deal of that is about Julia being ready to play and so was attentive to those kids.).  Ok, I am still mourning the sprinkler -- My local Builders Square has nothing remotely like it.  I have two other stores to look in and then I am going online.  

Will I say anything to the mom?  I don’t know.  Probably not, unless she brings it up.  Perhaps if she sees another sprinkler there she will notice.  Perhaps I will not need to water for another week and she will forget all about it.  Unfortunately, I will not let any other kids play in my sprinkler unless Julia is part of the group and I am watching and warning.  

For all the drama, for all my drama, the small purple smoke bush and the tall and light grass that are new and newly planted are surviving the heat and enjoying the rain today.    And I can see, in my mind’s eye, how lovely they will look next year.

This is day two although it appears that I have missed a day.  I spent yesterday, after the orthopedist to check Julia’s legs and a nursery stop to buy two new plants, in the garden.  Specifically, I dismantled the very front corner garden bed which is a rounded triangle and filled it again.  I have for a very long time disliked the planting in this bed and slowly this summer I have been subtracting plants and pulling roots.  Today, I cleared the bed leaving only a peony, a Russian sage, and a small grass.  Oh, some sedum too. Corm and corms of iris were dug and a bushel of lily of the valley.  It took most of the day and by the time Julia came home from school, I was just a bit more than half done.  She wanted to play with bugs; I didn’t want to stop my make over and so we stayed out for another two hours.

The finished product is not very impressive right now.  Lots of sticks with roots taken from that bed and others and divided.  Two phlox which will look the worse for wear come tomorrow and a new grass that is tall and airy which will complement the Russian sage and the arrow straight cone flowers.  

It is amazing how long it has taken to get back to a passionate day in the garden.  This is not the first but I still cannot take the deep satisfaction for granted.  I laugh at myself as I realize that my very old feeling that it is most appropriate to neglect the cleaning of the inside of the house as long as the weather is good for gardening.  Papers pile up almost as quickly as weeds grow.  Pausing mid-tasking, I wondered the why of the satisfaction I find in this hard, sweaty work.  There is no reason that I need a garden -- three years of neglect has shown me that.  And there is no reason.  Perhaps the answer is the same as, why love?

Julia is riding her bike around the block when I walk the dog in the evening.  She is more steady and using her hand break.  She is also taking the corner turns just a bit too tight.  She fell once when her turn was way too sharp for her to hold onto balance.  Yesterday, she told me that it was fun to ride as I walked.  First time she has said that.

Her first week of school has gone pretty well.  Julia has told me about most of the reported rough spots, and there are reports of her engaging students that she has not talked to before.  I think that she will work on writing this year.  I am not sure why but it seems like her focus.  At present, she writes enthusiastically but without linear understanding.  We have a few different outline supports and she uses them with great effort.  When I think back to my own school days, I remember learning to write when I was in fourth grade.  Suddenly, it was an open world putting ideas down on paper.  I remember feeling like I never got the chance to write what I wanted to.  Always boring essays and correct grammar, never the stories that were in my head.  I knew nothing of journals or notebooks that were used only at home then.  Julia knows about both, she is always hungering for new paper for writing.  And they want her to type -- an interesting idea.  Her first homework assignment, writing a reflection paragraph on some reading is going to take hours!  <smile>

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.

September.  The last day of summer vacation.  A new month.  Fifth grade starts tomorrow.

I woke up before 6.  The dog was barking and there is no quieting her these days.  We walked some and then I dithered trying to dispel anxiety which came unbidden before I awoke.

Fear.

I dreamed and I do not remember the dream.  I came to consciousness thinking that Julia was beginning 12th grade, not 5th.  And she was like she is today.  I was fearful that there was no good future for her and that she could not learn more than she knew at present.

And I had no dreams or hopes for her.  Or for me.

And in truth we have had a lovely weekend camping and a good day yesterday when we came home.  This was our second year at Upham Woods with FUS and there were more people who took to Julia.  Some children that played a bit with her and more adults who engaged her in conversation for short times.  But I am left with twin anxieties, happy couples ignite my fears of always being alone and happy, bright children focus me on who Julia is not.

I fear the unknown, the life that I have not planned for.  I want to cultivate happiness, find joy again.  I am not sure what to do with the fear and anxiety.  This is so clear to me that it is my habit of future living vs. living in the present.  And I feel stuck.  I can divert myself but I don't feel like I am meaningfully moving through the stuckness.  Is this a fake it until you make it situation or something else?  Do I embrace the fear and anxiety or is that wallowing?  And are the smiles that come from diversions real or paste?  Is there a benefit in naming the fears?

I have to move beyond this -- through, over, under, or around.  Julia is a glorious child and I am not so bad either.  I want to write once again that I am tired of this sadness, these fears, but obviously I need to feel them here and now before something else comes.  This morning I do not know how.  I remember writing soon after David died that I was ready to be saved.  This minute, I feel like I've been waiting for the savior since that time.  Not completely true at all, but there is something about that idea that rings so true.

And the only savior is me.  Have I been waiting for whatever spirit is hidden deep inside of me to spring to life?  Have I been waiting for the warrior of joy to spring fully formed from my head top?

This morning, I know that there will be no springing, no fully formed savior in any form.  Just me, walking through deep mud, feeling with booted feet for solid ground.