30 July 2012

written 29 July 2012

Teary today.  Not bad.  Knowing that this will come and must be gone through.  Not wallowing but experiencing front and center.
It is grey, drizzily.  Julia and I have stayed inside most of the day.  Doing her work.  Found another way to teach “more and less” on line.  Exercises that are labeled a pre-K.  For a moment, I am defeated.  Julia still needs to work on skills that are considered pre-K.  We work with the number board, with a exercise on a web site, with cubes that can stick together, and with our white board.  Less = little = few = small.  More = big = many = large. We work slowly and I post a new motto:
I will tell you what I think.  I will tell you why.
Julia does a very good job at finding answers in the eyes and comments of her teachers.  It is hard not to say yes or no when she asks, is this right?  But she is guessing in some sense and will change the simplest answer with the slightest move or murmur of disapproval.
And so we work slowly, finding answers and reasons.  She still can’t tell me reasons for answers.  Why is seven more than four?  And she needs to know.  For a typically developing kid, I would take the right answer and expect that she understood the concept enough to just move on.  And if that kid didn’t really understand, she would grow to understand it as she moved on to more advanced topics.  No such learning with Julia.
Every summer, I have mapped out what Julia would learn and been disappointed by how far back I had to go to get her close to the simplest of goals.  This summer is different.  I need to reach back, and doing pre-K exercises can be depressing, but we chip away at what is hard.
I explained how her brain works, drawing a brain and labeling parts “number” and “words”.  I told her that there needed to be a path -- a synapse -- between those two and that with each day we worked on connecting more and less to numbers we made the path stronger and wider.  I told her that the path needed to be a superhighway and told her that the path between seeing words and understanding the words was like the superhighway, and just a summer or so ago, the path was grassy with little stones to mark it.  
We are reading Flat Stanley.  It is a bit simpler than she needs but it is a good book for questions about inference.  That or I am getting better finding ways to ask those questions.  We worked for a few hours, and now she is doing her “enormous” dot-to-dot book which in truth is nothing but counting practice.  
Oh, the work that this child needs to do.
And I appreciate so much our quiet companionship.
I dreamed last night about a house.  I think David was there, but it was no a dream about seeing him, it was about being in a house that was new to us.  It was a series of unconnected room with paths between doors and a neglected garden.  At one point, I noted to myself that it was time to start working on the garden -- pulling out old shrubs and making it my own.  There were children living nearby, maybe in some of the adjoining rooms.    I was comfortable with them and they were not mine.  I felt ready to start the process of making it mine.
So, teary.  At church, there was a condensed version of Doubt today and the music was Satie’s Gymnopedies.  Theater and Satie music!  Too many reminders of too much of our life.  Afterwards there was no one to be brutally honest with and offer real opinions.  And at some point it struck me that David’s Pieces in the Form of Satie -- a lovely piece of theater that was roundly panned when it was done in NYC -- should have been done by one person.  An actor who could play the music.  Suddenly excited, I wanted to mount that production.  I know, knew in that moment, that I could make it marvelous.
I have had days of such strength over the past weeks.  I am grateful.  I am feeling myself come back to myself.  Today, a grey day, with theater and music, I slipped back to the sadness.  Today it was not debilitating sadness.  Such a much more normal sadness.  

26 July 2012

Nine days before vacation and I’ve loaded myself with work on the house to get ready for a bit more renovation.  Nothing new in a sense but finishing up last year’s bits and pieces -- new lights for living and dining room, a new mail box, fixing a slow leak in the porch ceiling, repairing, refinishing and updating my front and back door (yeah, working storm doors!!), deck repairs (which unfortunately will be all too visible with planks of wood not matching when it is fixed).  In this house where nothing is modern standard, everything is custom or  renewed.  Once again, I will go away on vacation and a bunch of tasks will get done.  We will come home once again to a house transformed, albeit on a much smaller scale this time.  
I am also back to the physical fallow year work -- basement, yard sale, and eventually family chrono file and pictures -- that I would like to finish before school begins, but with my foot healing and a needy garden and the summer pool I know that much of it won’t get touched until the weather turns.  I’ve also decided to clean my desk -- if it is still under the piles of papers, books, and Julia leavings.  Right now, it is unusable for anything but a pile collector.  I can’t find anything!  And I know there are things that I wanted to consult with this summer in those piles.  Even my mail basket which I attend to regularly because that’s where I keep the bills to be paid, is becoming inundated.
Feeling a bit overwhelmed at what I would like to get done in nine days, but not so much that I can’t take the deep breath and plunge.
I do believe that this is rather normal resilience and energy.  The stream of energy goes on, although I do not take any of it for granted.  I may never take it for granted again.
Julia and I have been touching on many sensitive and tough issues these days.  The other day laying in bed in the morning we talked about growing up, getting breasts, pubic hair and periods.  Sorry to those who don’t want to know this much.  Julia has always been dead set against growing up but her body is beginning to deceive her.  She is growing up and will need some sort of training bra in the fall.  She is not, however, the same little girl who would throw a tantrum when I (or anyone else) suggested would grow up -- and that was only when people would ask, “what do you want to be . . . “  She denied it for awhile this time but I insisted and she began to listen.  When it was her turn to question me, she asked what would happen if she grew so tall that her head hit the ceiling.  I told her that if that happened, and I didn’t think it would, that we would move to a house that fit her.  We’ve talked about that -- a house that fits her -- a few times since that morning.  I know she is a concrete kid and metaphors usually over her head, but this assurance that we will be together and be in a place just right seems to have made growing up more bearable.  
Yesterday, we talked about autism for the first time ever.  Julia is beginning to notice that she is different from other kids.  She knows that she does not know what the other kids in school know.  She knows that she has to work very hard to master things like math facts.  Now, much of the time she doesn’t care.  And she loves the therapists who work with her and considers them her friends, but yesterday we sat on the couch and talked about her working hard.  I told her that her brain works differently than most people.  I told her that she has a wonderful brain but that she needs to be able to go to school and live in a world with people who are not like her.  I told her the way that her brain works is called autism.  I paused before I gave her this information -- all the conversations and ponderings of disability vs difference flooded my brain.  She said she had heard the word but it never meant anything to her.  I told her that it was not an excuse for not working hard or not trying her hardest.  I told her I expected her to be the great person that I could see inside of her.  Will she remember the tears in my eyes?  Will she remember my faith in her?  Will she remember even the word?  Maybe not, but the conversation has begun.
We continue to read Happy Potter, book 1.  I am enjoying savoring the details that I had forgotten and maybe had even skimmed over to get to the adventure.  We talk about everything about it.  I am not saying that comprehension has grown by leaps and bounds, but Julia wants to understand the story and it will be her curiosity that grows her ability to understand.
It is always difficult scheduling OT and speech therapy with all of the other therapy Julia receives.  Because it is a high-demand clinic, there are no set appointments.  Instead there is a “process” of making appointments two months ahead, a process that discourages all but the anal and desperate.  And I’ve wondered whether to just give up the therapy until we are finished with intensive -- so for a year.  But then, we have a great therapy session or one of her therapists says something incredible and I am determined to keep it going.  
That happened on Monday in speech.  Her speech therapist commented on our -- Julia and my - conversation and how they have changed and what I could do to move them to the next level.  And wow!  This woman hears us talking for moments before and after sessions, and she was spot on!  She said I have been accommodating and should now move Julia to accommodate me -- slowly of course, but to consciously begin the shift to a more equal conversation.  Just the idea of a real conversation with Julia is enough to make me sing.  Just the care and attention paid to us astounds.  What angels surround us in this journey!

22 July 2012

I have started writing each day during the past two days and quit or was distracted after a few lines.  Tonight, after Julia went to bed, I labored over an updated resume for a policy-related internship which may be part of my LEND program.  And it is late now.  And Julia just asked to come into my bed “because it is nice to snuggle.”  So, this will be brief and if my eyes don’t close before I am finished, I will post whatever I get done.
Writing a resume.  Ugh.  Take a very unprofessional life and quantify it with names and dates and bullet points.  Just the idea of “updating” my resume sent my spirits and confidence into a tail spin, but I am holding fast and hard to the idea that I have something unique and important to contribute to the world I am entering.  I am not padding or stretching.  It is not a resume that will win some interview, but it is my background and a rough sketch of how I got here.  And that has to be enough.  
It is ego that wants to impress, that wants to win the qualifications game.  I am going to face this demon over and over this coming school year, and if I am going to make a place for myself among the experts and professionals, I am going to have to rely on something other than my degrees or work experience.  I have always had bold ideas and never had the nerve to see them through.  Here I have a bold idea and the resolve not to back down.  
And I have no idea where it will take me.
I went to the Quest orientation this afternoon.  Julia came with me and had much too long a time to do her dot-to-dot book and color.  She loved it and I felt somewhat guilty leaving her to do it.  The program is serious and still somewhat of a mystery, but the advice is to trust the process.  I found childcare for the first weekend retreat in September.  There are no electronics, even phones, allowed at retreats.  I am both excited and somewhat resistant.  
Julia is having good days but she is picking the skin on her heel at night.  She does it until it bleeds.  It must be painful but she does not stop.  Last year, when I could not control her scratching and picking, I brought her into my bed, put gloves on her, and laid down with her in bed until she fell asleep.  I wonder if I should be doing that now once again.  Reasoning with her does very little good.  Before she went to bed tonight, I gave her a foot massage, used a scrub on her feet and some moisturizer.  She went to bed with socks on but by the time she came into my bed, she had taken the the socks off and picked once again.  This is the same foot that is still healing from last year’s infected bug bites.  How much harm can one person do to her body before the body stops healing?  
Sometimes mothering Julia feels like plugging a leaky row boat.  And losing. 

19 July 2012

Written 18 July

The compulsion of a few weeks ago to read blog entries for 2010 and 2011 seems to have passed.  And I seem to be maintaining a somewhat positive attitude that was rare only a few months ago.  13 days so far, albeit with some backsliding.  But that too is expected.  
I wrote in another venue: Had the strangest feeling today.  A picture of David came into view and I did not feel the searing pain that I have had for the two years and 13 days.  I was looking at someone who was gone.  It is not hurt as much but I've lost the immediacy of his life as well.  In truth, for the last few weeks I've felt much strong and more able to cope with life.  I've felt able to move along and on.  I am preparing for a short vacation and a busy fall, as well as getting ready for a september garage sale that will get rid of all the rest of the things that I do not need in my life (ok, the last is a bit of wishful thinking).  But there is less and less of me that wants to rely on David for consultation when I make decisions.  I don't think about pleasing him.  Fewer of the cells in my body still expect him to walk through the door at the end of the day.  This may be acceptance but it is sad.
We are at swimming lessons again.  After an early morning storm which brought very needed moisture to our yellow grass and drooping shrubs.  Forget about flowering plants.  I have been losing perennials that were planted last fall.  No matter how much I water, I am not rain and cannot get deep enough to keep the shallows wet.  I am so grateful for the rain.
I did not think that we’d have a lesson today.  It was raining a half hour ago, but the sky is clearing now.  It is cool and my sleeveless shirt doesn’t keep me warm, but after days of disgusting heat, I can’t even mind the occasional shiver.  Julia is jumping around in the water although Mary Beth quickly settles her down into stroking.  Yesterday, we came to the pool for a short swim -- the benefit of the season’s membership is that I feel no waste at all if we swim for 20 minutes.  I think we were in the water for about 25.  We went over Julia’s strokes -- front and back overhand and traditional back stroke.  All are shaky and we if we stopped swimming tomorrow, she would forget them all by the end of the week.  But I see progress.  She is proud that she can finally float on her back very steadily.  It is still hard for her to kick and stroke with her arms at the same time, but we practice.  I imagine creating neuro pathways that are footpaths through a virgin forest.  Although virgin woods are to be treasured, I am working on the superhighways. 
We went to some friends for dinner last night.  Four other kids for Julia to interact with and me with four other grownups.  Who did a better job?  I had to dig Julia out of the basement a few times -- she had remained playing with legos or playmobiles or dinosaurs when the other kids had moved on.  She played wii dance revolution for awhile with the others and she ate with them.  Her conversation still arch, awkward and stiff but she does not give up.  It is painful for me to watch at times -- no, all the time, but she is who she is and she works on it hard.  For this, I have to be grateful and I have to admire her spirit.  Many a kid with autism buries themselves deep inside.  Not Julia.  Not at all.
For all my feeling of change and moving on to create a new life, I am still difficult to talk to.  I have little to say and my comments are not always relevant.  I live in the insular world of Julia and my own thoughts.  How close to the insular world of autism am I?  If I want to be good company, I better start working on it.  Reading bits and pieces of the New Yorker are not enough.  I don’t want to turn on the tv again, but I need to look outwards if I want to join the onrush of the world again.  
Underwear report: Two days after shopping, I feel very good.  New underwear that fits and has no holes may be a gift from the gods!  I’ve promised myself at least one other shopping trip before vacation -- I need pants that fit and could use a new top or two.  A summer skirt would be fun but I don’t know if I can stretch myself that far.  I mean, I don’t know if I can stand shopping that long.

16 July 2012

I am drawn to books about widows.  In the early months after David died, I read the widow how-to books or how to widow -- widow as a verb?  Next came, the memoirs, especially those written by writers, and I think I’ve commented about every one.  I’ve run out of those for the moment and I am on to the novels.  It is as if I am checking my form, my progress.  I am not an Olympian griever.  At least,  I don’t think so.  Am I a creative amateur?
In novels, the widow, usually in her 30’s or 40’s, goes into shock, resurfaces to resume life but hits rock bottom -- my favorite character tried to eat raw flour when she could not find cookies in her house, drinks to excess, and goes to work in pajamas before a mandatory leave without pay was imposed.  The widow slowly finds her way up from the mire, maybe she sells her house and rents an empty B&B or a loft or sublets something very modern from a professor.  She finds work that is completely different from what she did when she was a wife.  It is always more fulfilling than her previous occupation.  She falters, she doubts herself, she backslides, she cries and then she succeeds brilliantly.  The widow’s new occupation is inherently social as if to testify to the importance of getting out there after losing a partner.  Along the way she meets men and begins to emerge from the cocoon of her grief--a hair cut, new clothes, and high heels are part of the transformation.  By the end of the narrative, the widow begins, consummates or formalizes a new and wonderful relationship.  The new partner is broad minded enough to allow the widow to display pictures of her dead husband and even to mark the first anniversary of his death.  Yes, all of this happens within a year.  A widow for one year.  John Irving wrote a book by the name.  When I first read this scenario, especially the one year part, I was rather bitter that the whole process happened so quickly, but from where I stand now, I think I understand.  I’d want to write my story to happen in one year too.  One year of pain, of grief, of process is conceivable.  Purgatory, that limited time hell that the nuns taught, was always bearable, according to the teachings, because the soul knew that eventually she would “see God.”  Purgatory for a year sounds plausible.  
And just not to rag on the novelization of this journey, Joyce Carol Oats’s process from death of her spouse to re-marriage was about a year.  Nice job, Joyce! 
So, if I was to write the story of my grieving, I would shorten it as well.  Who wants to know or believe that at the two year mark, I am probably a bit more than half through my process?  Not quite seven months.  I’ve read over and over that the grieving process is individual and the widow should take as long as necessary to work through it, but I would not wish more than a year in grieving concentration camp on anyone. 
I am grumpy this afternoon.  I yelled at Julia before I took her to clinic and then I went shopping.  I hate the yelling and I hate shopping.  Throw in having the broken compressor on my car’s air conditioner fixed today and handing over my credit card -- oh, I am bleeding money this month.
Do I sound crabby yet?
Julia was tough today -- not just on me but on her therapists as well.  She was more distracted than usual, less able to focus on the people and tasks at hand.  She could not listen, and I lost my temper.  The temptation to yell at her is so strong because Julia listens when I yell.  She has trained me very well.  And I did, and she did as I wanted.  And I felt awful and apologized afterwards.  It left me crabby for hours.  Until we worked it out and were able to be right with each other again.  Part of the  crabbiness is fear, of course.  A child who is unable to focus . . . . how does the adult focus.  
The best of me with Julia is when I can focus and stay in the present.  And I practice and I practice.  And sometimes all the practice in the world is not enough.
Then, after I dropped Julia off at clinic for a therapy session, I went shopping.  Oy!  I do not shop.  And this is an understatement.  I am ok when I shop for someone else.  I can almost enjoy shopping when I do it for my girls, but for me.  Just never.  Comes from being fat as a kid, comes from always feeling like I should not spend money on myself.  
And I whine, why don’t clothes last forever!!  If I could only buy clothing that I could wear for the next 20 years.  Well, I have.  As I was going through pictures during the grand sort, I was startled to see how many of my clothes are really old, not worn out but old.  Well, maybe in some instances worn out as well.  And there are things that wear our rather regularly and need to be replaced.  Underwear is one of those things.  I haven’t bought new underwear in . . . . well, at least not for three years and I think it is longer.  I hate looking for bras and trying them on and paying so much more than guys ever have to pay for undershirts.  There, I said it.  I want to buy bras that cost what a pack of jockey undershirts cost.  
And I am laughing now.  
What a curmudgeon!  I could be David.  Not about underwear, but way to many things throughout his life.  And so, now me.  
Of course, I don’t buy a single bra or a few pairs of panties at a time.  Instead, I wait until everything I own is just about falling off me to replace anything.  Then I need a healthy bagful and that is expensive.  
Oh, I have to laugh at myself!  The curmudgeon is gone.  And I have new underwear.  Maybe, just maybe, I will learn to be better.  Somewhat more moderate in my shopping habits.  I need to love myself just a bit more.

11 July 2012

I have been reviewing material for the second Lay Trainer meeting.  One of the topics covered tomorrow is emergency planning.  Just reading through the power point slides makes my heart race.  I am in no way prepared for emergency.  I have carefully avoided any such planning since David died.  I bluntly refused to put an emergency contact down on any form until very recently.  I have no complete list of Julia’s providers or her medications or people who are willing to step in if anything happened to me.  I never had these lists when David was alive.  There were two of us and one of us would certainly be capable of dealing with any emergency.  Right?  Even that was pretty foolish.  I need it now.  
Wow!  Am I in denial or what??
I’ll finish preparing for the lecture tonight.  And add emergency preparation to my to do list.  I love making lists of what I need to do but then looking at the lists can be very anxiety provoking.  Too much of all of that today.
Breathe again.
Try to remember the small steps.
And breathe.
Therapist chaos these days.  My intensive team, so solid and dependable for the last two years is disintegrating.  People are moving on, which is understandable, but the replacement therapists are working for a few weeks and then fading away.  This is not personal but it is a pain.  My concerns are mostly that Julia works best and learns the most when she has developed relationships with people.  She works best when she is not spending time and energy testing people’s reasoning and resolve.  
I almost panicked today.  
And then I breathed.
I had a dinner party on Monday evening.  Pretty impromptu.  Some neighbors invited on Sunday and Monday, after Maria and I went to see a Shakespeare’s Richard III on Saturday.  It was the first Shakespeare I had seen in more than a few years.  A good production and I ate it up in big bites.  Julia and I have to go to more theater and then, maybe next year, I can take her to a Shakespeare comedy.  
But back to topic.  I asked Maria to come over for dinner one night and comparing calendars, it was either Monday or scheduling for late August.  We collected a few more neighbors and I had a bit of a crowd to cook for.  Ok, not a crowd, seven.  And I enjoyed the cooking -- gazpacho, sweet potato quesadillas, guacamole, enchiladas, and a corn salsa.
It was great fun to cook, straighten the house, and set the table.  I showered just a bit of time before people were due to come over and reached for a favorite shirt that I always wore for summer gatherings.  Just like old times.  No, not like old times.  Over and over during the preparations there were rememberings of so many parties, meals and gatherings we had hosted.  When I went though my belongings a few months ago, I wondered whether I should get rid of things I love to use when people come over -- candle holders, cloth napkins, bowls and serving trays -- because I could not foresee when I would use them again.  In the end, I kept only what I really loved but still wondered.  
I took out some on Monday.  
If I want the social life of dinners at home and theater evenings and movies, I have to instigate.  Friends, particularly Marie who is my theater buddy, have pulled me out for the last two years, but I need to take charge.  I have to make the time, find the child care, invite the friends, prepare and host.  I don’t want to live without the reasons for collecting candles and table linen.  My house has not been full of celebration, I have missed laughter.  
I have hosted practice get togethers in the last two years.  Mary and Robert, Amy and her family, but I hardly cooked.  Lots of take out and I lit no candles.  
Making a new life is so much broader than I imagined.  
I am walking better today than I have since my surgery albeit still using my boot.  Damned metaphor of healing that foot of mine is.  And I wonder if I should have had the foot surgery in 2009 when it was first suggested to me.  Maybe we, that is David and I, would have had some better reference for his healing body if mine had taken so long to heal.  None of this healing is wasted on me.

10 July 2012

It is 8:40 p.m.  Julia and I have just finished reading and I turned out her light.  I make myself sit down to write because I have stuff to write about and have not been able to discipline myself to take the little free time that I have to jot my musings.  I am mentally dragging myself and tying myself to the keyboard in order to do it now.  
I am good.  Doing well.  Starting to be busy.  And more, able to be busy.
I don’t feel like reading back to check what I written and so I expect to repeat myself.  Bear with.
Insurance came through last minute.  Monday afternoon while we were driving back from the Indiana lake house.  We missed only one day of therapy and got right back on schedule.  It fills our week those 25 hours, some at home and a bit less than half at the clinic 20 minutes away.  
And it is almost two weeks ago that Julia told me she wanted to find out about Harry Potter -- yes, this is connected to clinic therapy.  I had no idea where she got that from.  She had formed a dislike for Harry Potter more than a year ago when she inadvertently  saw a preview for one of the last movies -- dark and scary.  Yes, indeed.  And she would not budge from that view.  But then she changed.  I wondered why but frankly, I was thrilled.  I love the books and have wanted an excuse to explore the newish website Pottermore (yes, I could have done it myself but it felt like a bit of a waste of time).  And I wouldn’t mind parsing the movies once again.  I had to buy another copy of the first book because although I know that I should have at least two, and maybe 3, I could not find them.  I bought it used and instantly it felt appropriate.  Well worn and touched.  
Even the first book is well beyond Julia’s reading level.  For decoding, she is probably around the beginning of third grade (her comprehension is not as far along), and HP is closer to middle of fourth grade.  But never to be dissuaded from what she sets her mind on, Julia is slowly reading the book.  I do most of the reading at night but if she wakes up before I do, she reads over the pages that we’ve already read together to practice.  The website is a great help in pointing out distinct scenes.  The movie -- we watched over three days and I am sure we will watch again -- also helps Julia with understand.  Maybe inference?  I ask questions about the movie like I do when she reads.  What does that character feel?  How does this character know that?  Why is he happy, sad, scared, etc?  Of course, Julia notices right away that Harry lost his mother and father.  She is immediately smitten.  She care more deeply for orphans than any other characters.  (And so, Disney and ever sappy kid movie will hold her captive).  
But to circle back to clinic therapy.  I did not know where or how Julia decided that now was the time for HP.  One of her clinic therapists mentioned that Julia is now participating in the HP discussion during snack time and we think that there was HP discussion before Julia decided to read the book.  
Influenced by her peers!!  How great is that!  I know, I know, I may come to eat those words.  For now, it is splendid.
My post-anniversary energy, which I attribute some to a turning of the time and some to a phone visit with Ellen, continues.  Ah, also some of the energy is about being able to move about better and better as my foot continues to heal.  I can walk around the house in bare feet for a short amount of time, and I can wear my stiff boot and move around all day with only a very small amount of discomfort.  
And so, I have cleaned the house, become acquainted with the basement once again, made of list of what needs to be done to finished my fallow year, made another list of what I’d like to do this fall in terms of the house, worked on the mountain of paperwork to get to use my post-intensive funds from the state, watered the garden!  And watered the garden!  It is dry and I am living surrounded by dying weedy flower beds.  Why do the weeds always look better than anything that I want to grow?
I have energy and I have found a few reasons to bound out of bed in the morning.  I have not lost loneliness but there is some corner that I’ve turned.  I never know if it will last another day.  I am grateful for each minute of it.
“Some changes look negative on the surface but you will soon realize that space is being created in your life for something new to emerge.” ~Eckhart Tolle
I wrote from this a few days ago.  Ellen, my spiritual advisor, after I told her that what made me very sad wast that I feel like I am a better person than I was two years ago, said, that I couldn’t have gotten to this place without David dying.  She has said this in one form or another the last few months.  When she first said it, I told no one, not wanting to take it in to believe.  How can this be so?  How can I only get to this better place, become this improved person, as a result of my beloved’s death?  I mean, I am glad that I feel that I am heading in a direction that satisfies my soul’s longings.  Damned happy about it, really.  
I know I’ve written this in some form over and over.  Still, I need time to take it in.
Today, I had my first session as part of the research project entitled: Training Lay Trainers: A Strategy to Disseminate Care Coordination Skills to Families of CYSHCN (Children and youth with special health care needs).  There will be a few months worth of lecture/workshops during which the researchers will provide information, skills and strategies before they set us up with people who need training.  My first session was a catch up since the group (of about 12-15) met for the first time before I was part of the project.   The more I read and the more I hear, the more excited I get about this project.  I am actually getting some core training which will be very transferrable, and the content that I am learning which I will eventually be teaching contains hints and strategies for dealing well with the medical/social services/education communities.  None of that is wasted on me.  I can use it all.  I was pleased to discover that I instinctively do some of that was advised in the first session.  And I am not sure that it was really instinctive.  Law school helped to organize me a good deal and I use so many legal skills daily.  
I do wish that the sessions were in person and not via phone, but I am grateful not to have to drive to Milwaukee to attend the sessions.  Sooner or later, I will be paired with another lay trainer who is located in Southern Wisconsin and we will do at least some of the trainings together.   Team training is much less intimidating than solo work.
Julia and I are making it to the pool, even short visits, multiple times a week.  She is willing to practice what she is learning from Mary Beth.  My aim is to have her swimming at least 5 times a week, which is her two lessons plus three times with me.  This is not so much.  Much like Julia on a bike, she is able to learn single skills but has a hard time putting them together.  But she is willing to practice.  Her willingness is what keeps us going.  That, and my determination that she is going to learn what I consider important life skills.  
Two blessings to be sure.  
Ellen told me that my spirit guides were providing me with little encouragements along the way.  Not some guided path or even some divine signs, but little bits of encouragement to keep me going -- I can stumble and lose confidence so easily.  Grace if I was religious in that way.  Blessings.  Last  week, I received a check  in the mail.  It was my stipend for next year at UW.  Paid out of this years funds and so paid ahead.  It felt like a great act of confidence.  A gift that told me that “they” the LEND powers that be, could depend on my work.  The money is of course welcomed, but the confidence is even more so.  
Strange thing yesterday.  Julia and I were at the clinic a bit early and we were waiting in the parents’ waiting room.  A woman with whom I’ve spoken before -- her son is finished when Julia starts -- responded to Julia’s “conversation” starters.  We feel into conversation -- she had not heard many kids who asked for specific responses to be repeated.  Julia still does that occasionally, not as much as she used to in any way, and without consequences these days (like tantrums or melt downs).  Her son is still in the tantrum stage.  After we chatted for a few minutes, she began to complement me on how I was always so interactive and attentive to Julia.  She wants to be like me.  It stopped me cold.  I suddenly felt very guilty that she did not see how many times I lost patience with Julia, how many times I was frustrated.  But I thanked her.  Her son is  3 or 4.  She said her journey is stretching very far into the future.  I told her mine is too, but that we have come so far.  And I owned that coming more than I have before.  
Ok, I wrote.  Now I will let myself watch another episode of Drop Dead Diva.  Bribery does work.   Oh, no, it is not bribery when the treat is given after the task.  Incentives!  That’s it.  Incentives.

06 July 2012

Day done.  Survived.  Whole.  Teared up some.  Felt the impact of loss.  Felt the shifting of my terra firma.  What comes to mind is the night that I brought David back to the hospital the week before he died.  It was morning by the time I drove home.  I was tired and scared, but I felt very strong.  There was nothing that I could not do.  I am not so cocky and self assured today, but slowly I am losing the self perception of a wounded animal that I've carried for two years.  Today, I claimed something of my own.

I still wish with all of my heart that I didn't have to learn this strength as a result of losing my beloved.  I wish I could have owned myself, learned to use every ounce of talent and power, and grown old with him.  But that option was not given to me.  I have lost before and learned very little.  Perhaps I had to lose almost everything for the lessons to be perceived.  I am grateful to have found a bit of learning in the shards and crumbs of my well-known life that piled at my feet two years ago yesterday.

05 July 2012

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.

04 July 2012

Not such an easy good day.  I feel as if I am throwing my hands up in surrender.  No, I cannot celebrate. July 4th was David’s least favorite holiday and now it is mine as well.  At least for another year.
CAUTION: self-pity alert!!!  I am in the vortex of a spiral.  Like some super-sized magnet, I am catching up every sad, bad, debilitating feeling and thought.  I can immediately spin any blessing into a curse.  And I know that this is where I must be today.
It is a bit after nine in the morning.  Very hot.  Julia is in the pool for a lesson.  Her teacher, Mary Beth, is bright and happy.  Julia should have happy people around her.  I sit at a shaded picnic table with my water bottle.  It is the best part of the day.  Hot already and humid but there is a slight breeze and birds are singing.  
Already, I’ve talked to Mary and Lisa and emailed Traci.  And vented, pouring out my sadness.  My self-pity knows no restraint.  There is no good, all is pain and loss, nothing  to live for and what is here is too hard for a saint.  
Umm, does that take care of it all?  I breathe and almost laugh.  For the moment, sanity returns.  Lisa said that inside I must know that I am ready for this vortex.  I know that I must just sit with it and abide.  The only way out of it is through it, but man!!!  There is no adequate thanks to give to those who abide with me.  Is it part of the spiral?  I wonder if it is going to be worth it -- this abiding -- when I am out the other side?  Will my dearests say, “She was worth all that bitching I had to endure,” or will they wonder if I’ll ever stop.  Will I stop?  
There are blessings in my life -- god, I know that, but they all are burdens today.  The actual burdens -- no air conditioning in my car -- can be remedied for the most part.  Still, the spiral picks up speed.
So, my blessings and forgive the need to put the negative spin on each one:
We have insurance (with the accompanying bills which are incredible) and have picked up intensive therapy after one day away.  This means another year of the therapy that has brought Julia so far.  My fear about what will happen at the end of this year are large -- well, large today.  I need to keep in my brain that each year has brought Julia along to awareness and understanding and more of the ability to be present and engaged.
We had a lovely times at the lake this weekend.  Julia went tubbing for the first time and was scared and loved it!!  My pictures are blurry but her blurry form speaks volumes.  We are also so very lucky to have friends, old, good friends who can be generous with her.  There were six other kids at the lake house, most older than Julia.  Every single one of them was kind and loving.  Each payed attention to her and engaged her in conversation, games, and general kid stuff.  I could let her “go with the kids.”  She was as happy as I’ve ever seen her.  I can in a moment spiral into comparisons of Julia and the almost 11 year old who was the other young kid at the lake house.  This other child is very much neuro-typical -- responsible as an 11 year old can be, defiant and moody, inviting and bright.  I could talk to her.  She is all of what Julia is not.  I have to pause and remember that I had that child rearing experience.  Yes, I wanted it again with Julia, but what I have is who Julia is.  It is a different journey -- Holland not Paris.  I cannot forget the tulips.  
As soon as we arrived at the lake house, the 11 year old asked that Julia sleep in the loft room with the other kids.  I hesitated.  Of course, I did.  And Julia loved it.  Loved being put into bed and tucked in and left with the girls to chatter until exhaustion over came them.  
Much later: Julia and I worked after swimming lesson and then she put all of her books away and I cleaned the bathroom.  The plan was to spend the afternoon at a pool with Mary and Robert and then go to a fair and the fireworks, but the temperature was over 100 and the house was so delightfully cool and we opted for movies and and indoor picnic supper.  As low key as could be possible.  Funny that this was exactly the kind of Fourth of July celebration that David would have enjoyed.  
 David's lily.  Blooming early this year.
Home now.  Dog walked.  Julia in bed.  The quiet of the night blankets my sorrow.  I am quiet.

Written 29 June 2012

The date of my parents’ wedding anniversary.  The date of my dear friends’ wedding anniversary.   
David was not one who wanted to mark special days.  I have always been rather ambivalent about it and so we fell into the pattern of very low key birthday and anniversary celebrations.  Sometimes going out to eat, one surprise birthday for me, a few times going out with friends, but when we moved to Indiana our wedding anniversary fell on or very near to the beginning of the school year which further dampened any celebration.  We were all about the beginning of any school year.  I have always felt the first days of school to be another chance at a new year, another beginning, a joyous event.  This year it will quite appropriately mark the end of my fallow year.
But back to topic, the days that others put so much emphasis on - at least in my family of origin - we put little.  But, another but, another a jog in the road, now I am left with being one of few, if any others, who remembers that it was my parents’ wedding date.  I look at the pictures I have from that date -- formal portraits -- and see those young faces.  Except for their flower girl, who is in her 70’s, every one of those young people are gone.  Gotten old, lost dreams and hope, felt joy and love, was terribly disappointed.  And died.
I could look at my own wedding pictures -- not a formal portrait among them -- in the same way.  But in my case, it is not everyone who is gone.  Only the grandparents and parents.  There are uncles left for which I am very grateful.  There are siblings and dear, dear friends.  But it is David who is gone.  
Next week, two years gone.  I ruminate and scribble day in and out about his being two years gone.  How can I still be surprised by it?  How is it possible that I am actually growing in acceptance of it.  I can still cry and want no part of healing, but every moment of every day is not as painful.  There is still the question of feeling joy again.  Others and experts say it is possible.  I trust they are correct, but I am not there yet.
Julia is with her swim instructor.  Did I write that the instructor is a lifeguard and has also worked as a line therapist for kids with autism?  I go to pay for the lessons and the woman taking my check says that she will give it to some manager, “Very few kids take private lessons.  I have no way of entering it into the computer.”  In every instance, it seems to me, Julia is the one who defies the norm.  And if I can wallow in the self-pity of the moment, which I certainly will do, it is so very difficult for me going through my own mucky journey to be reminded constantly that my child is unlike all the others.  My ears hear that she cannot measure up to the others, that she will never be able to participate, that her differences are great weights around both of our shoulders.  And in those moments, I do not know how I will live the journey.  It is all too heavy.