A commitment to being honest in what I write is not easy.  I wish I could omit entries like the last one.  I wish . . . yeah, beggars riding horses.  At least when I read what I write, the lack of daily writing means that I can see the radical shifts clearly when the truth is that most days I am able to drift along without heaving changes with much regularity and feel the compulsion to write only when I lose the ability to drift in complacency.  I'd like to believe that I am always the patient, enduring, loving person that is the best of me.  My reality and the stumbling humanness that I stare at in the mirror  is the counterweight to that best me.  It is not pretty.

Today, the answer to why I have a practice is that it helps me stop the downward spiral and allows me to remember that the practice is the coming back to center over and over.  And over.

An unexpected free day yesterday turned difficult as I began to see some of Julia’s losses.  After a few weeks of laying off calendar work which has been done every day for months, she has lost the concepts of yesterday, today and tomorrow.  More probably, she never really had them to begin with as her therapists and I have consistently used visuals to prompt her answers.  She has never used the terms on her own in conversation.  Days of the week are also not cemented in stone.  Large concepts of months and years are fading.  

Time has always been an external construct for Julia.  I was beginning to believe that she was developing a time sense, some understanding of the “when” question.  We, or in our case, I are always talking about time: swimming is at 11; church is on Sunday; vacation is next week.  First, we do this, and then that.  None of this comes out of Julia’s mouth unbidden or unasked.

Bike riding, which I was so sure was checked of the list of projects, is unsteady.  For one thing, she does not use her foot brake and I expect that she will always have a bike with foot brakes.  For now, she can put her feet down when she wants to stop and occasionally use a hand brake, but these will not be sufficient if she gets a much needed bigger bike.  I need to decide whether this is a skill to continue working on.  We have been at it for a year.

It is discouraging.  Nothing is easy.  Every piece of learning is hard won and not necessarily won forever.  My own frustration, and something that is hitting home now that intensive therapy has stopped, is the difficulty of keeping all the balls in the air.  This summer we are doing PT exercises that Julia needs for her legs and general strength.  Bike riding is one of the activities that we can do for PT but I had expected that bike riding would be a casual, fun exercise, not a deliberate run around the block working on braking.  And working on braking is not really bike riding to the extent that it is strengthening anything except my muscles as I run along beside Julia.  I wonder how many balls to keep in the air.  Perhaps we can only do what is absolutely necessary.  What is necessary?  How narrow must our life together be?  That feels sad -- to give up on what I thought might be an activity that we could do together and with others.  An activity that she could one day do with peers.

I’ve been going through her school/home papers -- sorting, organizing and putting in files.  I see the great leap in the year around David’s death.  She was ready to learn and took on reading and later numbers, but progress has slowed since that time.  Her decoding has move along and she can read almost grade appropriate books (the caveat here is that she is 2 grades below her age peer group), but her comprehension has not really grown in the past year.  Her reading comprehension scores dropped over the last year.  Granted she is using content better than she was last year.  She was able to take modified tests with support this last school year and her spelling seems to be sticking, but her ability to talk about a story, her ability to explain a narrative she has just read is very low.  She does not infer or remember what she read yesterday or last week which diminishes the value of great decoding.

Most discouraging is to see that her drawing is not progressing any quicker than her reading or math.  Yes, she has innate talent and art work holds her attention for almost unlimited amounts of time but I see the same shapes and forms drawn and colored over and over.  Sometimes there are backgrounds or entire relationships drawn but that is the exception.  And no matter how often someone explains to her about sketching lightly and not drawing with heavy dark lines so that she has the option to erase and edit, she draws dark images and labors long and hard and with great frustration to edit her drawings.  Or she draws darker and darker until the image is mostly obscured by black.  Can Julia acquire skill? 

I’ve read many times over that with puberty can come learning plateaus.  Sometimes learning stops.  I have seen growth in Julia over the years and that growth, however ragged, inconsistent and slow, has been my beacon of hope.  How do I conceive of standing still, of working hard to maintain, of limiting life so that it does not contain what she cannot do? 

Julia is not a good companion or helper.  She is hard work that never ends.  The simplest chore or assignment can sometimes be accomplished without supervision but always needs checking on and often needs support.  Even on my best days during which my patience stretches and bends to meet her needs, I am exhausted.  On days that are not my best, I am angry and desperate.  And very much alone.  It is called a lack of social skills, but much of my loneliness comes from her lack of fundamental interaction ability.

I expect that most parents feel this way at times and most parents with typical kids would say that Julia was just 12 and has plenty of time to learn and grow.  But Julia is not typical.  Reading about a 4 year old, home from China for two months “finally” learning to ride her two wheeler sends me into a tail spin.  Julia has had a week long intensive course on learning to ride her bike, a modified bike, and months of practice with multiple people, and she does not know how to use her foot brake.  

I know that this morning I am staring intently into the half empty glass of our lives.  My greatest fear is her eternal dependence.  I am very tired, seven years tired, of being the only one to initiate, to coax, to plan, to intensely desire to move ahead.  There are few “buts” of comfort.  Sometimes I allow myself the daydream of believing that if I had a partner in parenting, this life with Julia would be less difficult, but even if that was so (and perhaps it would not be), there is no partner here. 

And now I need to stop this downward spiral, pick up a book and perhaps doze before Julia wakes up.

Written 16 July 2013

Yesterday: Oh the lazy days of summer. . . not!  Speech this morning then swim lesson then Hillary meets Julia and I go to a meditation workshop.  After the workshop I go shopping for summer vacation clothes (Actually summer clothes in general which I sorely need.  My pants are falling off my butt which is not a bad problem to have).  In the meantime, Hillary drives Julia to group therapy and I pick her up at 5 for another dip in the pool and end up at the library for a dinosaur workshop.    Amazes me that it works out reasonably well.

Today: We had no time for meditation together or pt exercises yesterday and I had almost no problem letting both go.  This morning we went to an early session of crane meditation and had time before we went to swim lesson.   Since I usually note when Julia is less attentive, I should say that I’ve noticed more attentiveness this week.  I wonder if this has something to do with her giving over some control to me that she usually gives to her therapists.  

Julia is doing a good job this morning at listening to swim instructors.  I am sitting two lounge chairs to the left of the lane that they are using and only about 12 feet from where they are.  Julia looks for my approval and calls out to me when she thinks she does something well.  I give her a thumbs up and at least one of the teachers turn to me with a weak smile.  Overprotective, huh?  

She is learning to dive.  Oh, I remember doing that, a bit younger but probably at about the same cognitive age.  It seemed impossible until it was easy.  The two other kids in her class (both boys today) are no better.  Belly flop after belly flop.  They each do 4 or 5 and then the teachers move on to something else.  Just as well.  Sooner or later, those summing would hurt.  Now they are playing Sharks and minnows (?).  Julia’s processing challenges make this really hard but she does not give up.  

Written 24 July 2013

I have been belly-aching about being without joy.  No joy, no joy.  And I want to have it back so much.

Enough!

So, when I find some, I need to note it and be so very grateful.  I am grateful to find joy once again in preparing food and the house and Julia and I to have friends over, to celebrate, to have a party.  I enjoyed getting ready for Julia’s end of therapy party, and then again for David’s death day celebration, and this week for having three Waisman friends over for after work beer and food.  The joy of it has not crept up on me.  I felt it preparing for Julia’s party but I could not really believe that I could feel that way for the kind of entertaining that David and I loved to do.  But now that I’ve had the feeling three times, I expect it to stay.  

Yesterday afternoon and early this morning

Afternoon

We have gotten a surprising amount of house tasks finished.  We woke up at 8 and I mopped the house -- I had vacuumed yesterday and we both put stuff away on Friday.  We went outside while it was still cool and I gardened and Julia played with her bugs.  The phlox is finally booming.  I cannot tell the difference between phlox leaven and a tall weed that is doing rather well in my garden.  With the phlox blooming -- or at least beginning to -- I now know which tall weedy plant to pull.  And that’s what I did this morning.  The pulling clears a little more of the part of the apron bed that looks like a jumble for most of the spring and summer.  I am slowly emptying it and this fall I will figure out what I want it to look like.

There are some spectacular parts of the front and back gardens -- like the hollyhocks in the front which are really magnificent but all in all, the gardens still look very ragged and messy, but I am not trying for manicured perfection this year.  This is coming home to the garden and much, much transition.  It will be more than a year before I brag about this garden.  And that’s ok.  Perhaps by then I will find some joy as well.

Next morning.

I re-read the last sentence that I wrote.  “Find[ing] some joy.”  I wonder of that.  For the moment, in this early morning before the business of the day begins, I feel a growing patience which seems to be due to my practice, at least in part.  Some due to this season of letting the school year’s work that I lean into hard nine months of the year really lie fallow.  I don’t think I really understood fallow time before taking some more than a year ago.  Of course, that fallow time was hardly what it was called -- I kept so busy with grieving and getting so many physical circumstances in order.  This summer IS fallow time.  There is very little tilling of our intellectual soil.  And I feel how much we need this time.  

Ok, I’ve lost my thread.

So I see patience and probably resilience growing above ground this summer, the roots working for at least nine months or so.  And now, I am also looking for joy.  Optimistic.  Indeed.  But not a bad goal.  

Julia should begin her third period this week.  Right now, I am struggling with whether to try to teach her to use tampons so that she can swim this week.  I have no idea of how to do that.  No one taught me.  Did I help Cheshire at all with this?  Or just wait for her to pick it up “on the street?”  Is there a youtube video?  I remember sitting out swimming when I was a kid and then having to explain why I was sitting out to my brother without any help from my mother.  Julia would not need to explain to anyone but I hate her missing the pool, especially lessons this week.

Time for an oil change for the car before the real fun of the day begins.

I love this time if for nothing else but not having to wake up early 5 mornings a week.  I am so much better at 7:30 or 8 or even 9 than I am at 5:45.  Julia is no different.  Once again, it is hard to fathom that there is a time during the year when we cannot go outside barefoot and in sleeveless shirts, when preparing for the day means sun screen and bug repellant, when the sun is up long before we are out of bed.  It is this time of year when it is possible to find my own rhythm and for Julia and I to figure out how to spend our days.

We spent most of today at the Madison art fair.  Just walking and looking.  It was hot and we had lunch inside with air conditioning but there was at times a small breeze walking around.  Julia enjoyed looking.  She asks questions about paintings, she told one artist that his dragons were too fat and short, she wanted to buy big sculptures.  Would that I could fill our house with more original art.  She pointed out some very interesting work.  I bought more bowls at the high school student ceramic sale and Julia asked to buy her own vase.  She now wants to find fake flowers to put in it -- we’ve seen wooden daisies and paper mums.  We didn’t see any today.  It will be another project to find some.  Possibly make some?

We’ve seen the physical therapist twice in the last 6 weeks or so.  Julia has one thigh bone that is twisted so that her one foot twists in.  As she has grown over this past year, her gait has become just a bit off.  There is no fix for this aside from surgery and no need for surgery unless the leg hurts.  We can, however, strengthen the muscles and work on her balance.  So, the PT has assigned physical exercises which in themselves are pretty boring.  I found a “chore chart” app for her iPad and she is collecting check marks -- one for each exercise she does -- and a reward at 40 checks.  This carrot at the end of the process has worked before and I’ve left the reward pretty open ended.  She has her eye on a plastic dragon from “How to Train your Dragon.”  If she does the work, I am happy to buy her the toy.  We may have a bit of an influx of dragons in the next few months.  And even though I have not set up any academic work for Julia to do this summer, and have been so very intentional about this, physical work feels so different that I don’t mind it at all.  Neither does she.  

Interestingly, Julia is still reading, doing her reflex math computer games and occasionally picks up math workbooks.  I don’t discourage any of it and when I am making supper, I will ask her if she wants to do her reflex, but none of it is scheduled into our days.  This is still hard for me but I am learning to let go of my idea of progress just a bit.

Ok, now for a bit of a vent.  When we are at the pool during the week, I can take the water aerobics class at noon a few days a week.  Julia sits on a lounge chair and reads or draws.  I am not sure which of us is happier with the arrangement.  Anyway, she was on the chair and I was ready to get in the water the other day, when Julia asked two girls sitting a chair away if she could play with them.  They were close to her age and 12 year olds do not ask to play.  I know that.  But.  The girls looked up at her, glanced at each other and put their heads down and began talking to each other.  Julia, ever persistent, asked again.  Politely.  Again, she was ignored.  I bent down to Julia and said, “Maybe those girls don’t want to play.”  And I was going to let them off the hook completely, but then I realized how hard Julia and I and all her teachers and therapists have been working on social skills.  Here were two neuro-typical kids whose behavior was exactly what we have all be trying to discourage in Julia!  So, I took two steps towards the girls and in a very friendly way said, “Hi.  I take it that you probably don’t want to play with Julia?”  They looked up, embarrassed, apologetic and aware of their behavior.  They began apologizing but I stopped them and with a smile on my face, told them that when they should respond to the question.  They didn’t have to play or talk but they should answer the question.  I turned back to Julia and she had been watching and listening which I hoped for but did not expect.  She said, “They didn’t have good behavior?”  “Nope,” I said, “and I expect you to do better.”

It pissed me off greatly to see Julia ignored.  It happens relatively often outside of school and church.  I usually try to ignore it and move Julia along, but I am going to stop protecting NTs who don’t know how to talk to Julia.  Instead, I am going to ask those strangers who stare or snicker or ignore to be as polite as I expect Julia to be.  

Perhaps I will change the world.  

Written 8 July 2013

Into our second week without therapy.  Julia kissed me this morning and said she was happy.  I know that she was missing her “therapy friends” last week and it was a bit of a strain for us.  I think that her therapy friends are more fun even though they demanded more from her.  I am giving her more time to do what she wants to do.  And to do it alone at times.  I insist on some things together -- oddly enough including finishing the canvas that she started with her therapy friends at the end of therapy party.  She seems more comfortable today.

Julia is starting the second swim lesson second.  She has a sweet instructor who has no idea of what to do with Julia.  And Julia is trying very, very hard to please her.  When we were standing in the group of parents and kids waiting to have instructors and classes announced, I asked her if she was nervous and she gave me a very tight-lipped ‘yes.‘   In the water now, she is working to control her impulsiveness but jumping out of her skin trying to do what the teacher announced almost before she is finished saying it.  They are going over strokes that they know and Julia can’t wait to show what she can do.  If she was a NT kid, I would correct her, asking her to wait her turn and be patient.  As it is, I am so pleased that she is trying hard to be a good student.  Our practice last week -- every day that we were at the pool has helped to keep Julia following directions even if they are mine and not a teachers.  

Watching Julia is see what I am usually blinded to.  On most days, I see her disabilities.  Hard to admit this to myself -- I see the work we must and should do.  I plan every activity to have some lesson.  This morning, watching Julia try to please her teacher, I see how quick she is.  She gets what her teacher is explaining way before other kids.  She is ready and very willing respond.  Yes, impulsive and yes, sometimes not really correctly because she responds before the teacher is finished explaining, but she is bright.  In our own world, one in which 12 year old act like 7-9 year olds, Julia is her own wonderful self.  

It is only the second week of July and I am feeling the summer is whizzing by.  The August vacation is not planned and my ambivalence needs to lift if we are going to leave at the end of this month.   I am trying to appreciate the value of few plans and goals.  I’ve pared down my tasks list.  This is both intentional -- if I have too many tasks on my list, I will be frustrated when I can’t complete them.  It is impossible to “hang” at the pool or catch fireflies during our evening walks and so I’ve minimized tasks and let those that are not absolutely necessary.

the day after

I just posted a lot of photos in the photo blog.

Indeed, I did more than survive yesterday.  Thriving may be going a bit far, but abiding in acceptance, understanding and love are useful ways to define the day.

The days was a slow flurry of activity.  I cleaned and cooked in the morning in preparation for the evening.  I was in the kitchen puttering during that half hour that marked the time that the emergency team worked to try to restart David's heart.  I pondered the meaning of "time of death."  Was it the time that the pulse was lost or when the medical team gave up, when they asked me,  standing at the foot of his bed, whether it was ok for them to stop working on him?

We went to the pool -- I took my water aerobics class, bouncing in the water with a bunch of old ladies of which I proudly consider myself part of.  Then Julia came into the water and we saw some friends from school.  Julia hung out with the girls while I chatted with the mom.  It was a beautiful afternoon, sun, puffy white clouds, sparkling water and company.

Then home to finish preparation for the evening's gathering.  Maria from next door stopped by with an offering to Julia and I asked her to come for dinner and the movie.

Mary and Robert arrived early.  I showered and the three of us prepped while Julia did her reflex math. Then Maria and Kirstin and Amy and crew came.  We feasted on antipasto, home made hummus, cheese, M&M's, ice cream and Amy's incredibly delicious pear sorbet.  My DVD player would not respond to the remote and for moments there was the possibility of no movie.  Maria stepped in and offered her living room and DVD play.  A very handy save and the party became progressive.

The film, Mysaki's Princess Mononoake was very intense and long.  We all struggled a bit towards the end.  Julia was too stimulated and she needed to burst out in talking very often.  And we were all patience.

And then the movie was over, loving people left, Julia and I prepared for bed, Julia fell asleep and I could not sleep for ever so long.  But no matter.  I had made it through another of these anniversaries.  I was able to have a party, a gathering of loving souls to get me through.

And I enjoyed giving this party.  Actually, I also enjoyed doing the End of Therapy Party two weeks ago.  This too is a change, a move out of the tunnel of grief.  I am beginning to be able to do what David and I loved doing together.

Today begins the time of living here, in Madison, for more time as a single mom than I did with David. I miss him.  I would do so much to have our lives together back, but . . . I am learning to thrive.  At least yesterday and this morning.

Third Anniversary

Julia is just waking up, Mary called a few minutes ago.  I've been up for awhile, answering texts and emails and checking face book.  What I wrote yesterday, it true for today.  I am in a new place, the intense grief of the last few years is not present.  At least not now.   I now know that difference between grief and sadness.  And I have plans for the day.

I am fully enjoying the new found energy to engage in my world, my life and Julia's life.  I am very grateful for the healing power of good friends, quiet counsel and time.  I read what I wrote of this day last year and the year before.  And the day before this day -- last year and the year before.

And I also wrote and posted this:

A day to abide with what comes, to be gentle with ourselves, and to remember that great loss can only happen when there was once great joy.

I wonder how long I will be making posts like this on July 4 and 5th.  It will be as long as I need to do it.  The lilies that I called David's lilies have not bloomed yet, possibly in another 3 days.  When I got my new credit card in the mail two weeks ago, I remember thinking when I signed up for that card that when it expired, David would be dead 3 years.  I could not imagine that time and now it is here.  What ways to mark such a time -- lilies and a credit card.

Possibly more later.

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.

Written 1 July 2013

This evening after supper, Julia and I went on a short bike ride.  It was the first time I took her out with both of us on bikes.  The first time I did it alone.  We rode for about a half hour and had my blood pressure been taken, I am sure it would have been high, high, high.  Julia did a decent job.  She is more steady than she was even a few weeks ago.  She attends to the road and to what I told her.  She made a few mistakes but nothing awful.  She had a good time.

I on the other hand was a mess!  It was an exhausting trip.  I was so worried about her safety and the cars and other bike riders and crossing the street and balance.

Given time and practice, I am sure I will get better at it.