Sunday, December 30, 2012

Courage is fear that has said its prayers. 
~ Joyce Mayer

Possibly, but I need to think on that.

The days pass and tomorrow Julia and I will leave Brooklyn and head back to Madison.  I have started writing  few posts and either taken on longer topics that I could write in a short session or I find much better things to do.  Like talk to Cheshire.  Like watch a movie.  We have been busy -- museums -- Brooklyn and The Tenement, a show, cooking, visiting, and Les Mis -- but everything on a low gear.  Cheshire and Chris recovering from a stressful semester in grad school, Julia and I just recovering.

And now it is 10 in the morning and I have to get Julia up and her day started.  Soon.  We are all enjoying sleeping late.  I am sleeping later than I have in a very long time.  Of course, not going to bed before midnight.  Or 1.  Julia loves the lie ins, but has an incredibly tough time getting to sleep at night.  Once again, I had hoped to get her remaining sores healed.  Finally and completely.  But it has not happened this week.  She is still peeling her right heel and scratching scabs on one arm.   I am going to mount the effort again once at home.  Having her sleep in my bed and staying in med with her until she sleeps until school starts.  

To bullet point the time:
  • started work on 2013 resolutions.  Some of it just repeating last year’s for sure but some for new, some rephrased.  I have less to give up, more positive activity and contemplation, and each to do verb is attached to the adverbial phrase ‘with intention.’
  • being with Cheshire and Chris, like being with Lisa puts me face to face with loneliness.  I sent up the intention to live closer to someone whose roots have mingled with mine.
  • the Wednesday before we left for NYC, during Crane meditation, I was following the simple movements when I felt, for the first time in two+ years, that my whole self was in my body.  It was a whoosh of realization although I have the feeling that there has been incremental gains over the past month or so.  And the feeling has stayed.  Another veil or haze of grief has been released and I can stretch into my full physical self.  Impossible right now to explain the feeling -- so physical, so mystical and spiritual.  So ordinary, really.  It was as if I suddenly realized that I had been hovering above my body, observing and directing but unable to truly touch the full physical impact of my experiences.  Is it because now, finally, the physical experience is not as excruciatingly painful as it has been?  Like holding a hand just beyond the hottest part of the fire and then getting the ability to grasp the flame and survive.
  • possibly because of this feeling of being “in my body,” I spent a very low morning on Christmas eve.  I felt very sorry for myself.  Being in NYC reminded me too much of being here in 2010 and I felt bereft of familiar anchors to hold me steady.  And I could see how Cheshire was carving out her Christmas which includes the large and loving family that Chris is a part of.  I did not feel like I could melt into Cheshire’s plans -- Julia’s needs and challenges put demands on the structures of time and make melting into any social situation impossible at best.  For moments, I wanted only to escape the facade of a happy holiday and let Cheshire go into a family that is enjoying some simple joys of the season.  I could give her Christmas with Chris’ family and not cling to our holiday together.  But Cheshire and I talked, we cried, and we spent the late afternoon traveling into Manhattan for a glimpse of the big Rockefellow Center tree and ice rink, and Saks windows, and St. Pat’s chapels.  We went to Chinatown for soup dumplings and tofu curry and green tea ice cream and home again on trains in the rain.  
  • this is the year of beginning again to find what we will do on Christmases to come.  It has taken some time to accept that  but i can now.  
  • I met an old friend, Steve, for dinner two nights ago.  He is one of those people who was long absent from my life, someone I lost track of as we moved west and my experiences seemed far removed from his.  But he is one of those people with whom the connection is immediate and deep.  We met at a little restaurant on the lower east side and caught up and told stories and traded ideas about writing, work, art, life.  Of course, always life.  He is more exacting than I am -- he is taking photos and his photos are like his art and his poems.  I see something in what he is doing that I want to cultivate -- not the taking of interesting photos or the writing of poetry, both of which are mysteries to me -- but the cultivation of inspiration.  That is what I will take for this year.   
  • Lisa and Michael came up to go spend the day with us.  To go to the theater and take a meal together and to talk.  How much more is there to say of family like this? 

Monday, December 17, 2012


I have been writing and re-writing as I try to make sense of Friday’s killings.  I will not post what I’ve written, but this morning a Facebook friend posted a link to a petition calling for common gun control.  Almost immediately those commenting began to argue, and after days of anger, fury and sadness, I was able to articulate this:

“There are those who will fight for their "right" to own and use what one commentator referred to as "formidable killing machine(s) eschewed by most hunters, unwieldy for self-defense, similar to weapons used by our soldiers in Afghanistan and the weapon of choice of the Beltway snipers."  Their voices have dominated the discussion to regulate and ban fire arms.  Those of us who have a different vision of our children's future must commit to change, stand behind our President as he engages in discussion and become the majority needed to move our policy makers  beyond the influence of the NRA and weapon enthusiasts.  Simply put, we must be the change.  As for me, I care for my children and the children of my larger community too deeply to do otherwise.”

Monday, December 10, 2012


Glass half full or . . .  I asked our Intensive team phycologist for some ideas on improving our morning routine.  My love and logic plan has not been completely successful at changing Julia’s morning behavior and motivation to get up, dressed and ready for the bus.  She still really wants to get on the bus and she wants to keep her iPad for the day but those two carrots are not sufficient to get her up and moving when the alarm goes off.  She prefers staying in bed as long as she can, dilly-dally in the bathroom without managing to do more than take off her pj bottoms, bring clothes downstairs and rush through her morning routine to just make it onto the bus.    I am not sure whether her inability to keep moving through the routine is sort-of normal preteen activity (I remember the same struggles with Cheshire at that age.) or a real inability to keep focused on the task on hand.  (umm, is that really the normal preteen behavior??)

So, I asked for more help.  One piece of advice I got was to give her her ADHD med about a half hour before she wakes up.  So, set my alarm for 5:30, shuffle into Julia’s room with a pill and a glass of water, put the pill in her mouth and give her the water.  

No, I am not happy about this one, but heck, if it works I’ll do it.

So, went through the 5:30 plan with the result of Julia being a whole lot clearer and focused when the alarm went off about wanting to stay in bed until the absolute last minute!  

Yes, kinda’ funny.

Julia lost iPad privileges for the day and she vowed to do better tomorrow.  And she will.  For tomorrow at least.  Someone said it takes 21 days to change a habit.  I think it’s a lot longer for me, and for a kid on the spectrum much, much longer.  

But we’ll get there.

Thinking about the last year, one way or another, I am focused on teaching Julia independence and self-care.  Some of it I also taught to Cheshire, but teaching Cheshire was teaching a person who was always almost out the door.  She wanted the teaching or took to the teaching because she could see that she would need it one day.  Maybe not consciously, but her outward trajectory was always present.

Julia, not so much.  I teach her to shower, to wash her hair, cut her nails, floss her teeth, put dishes in the sink and to always put water in her oatmeal bowl.  And Julia learns and practices, but if you asked her, she is always going to live with me.  And she might.

I’ve lost my train of thought.  Julia had some lovely parts of the day.  In the car, between school and speech therapy, I asked, as I do every day, what she did in school, making her tell me three things and probing for details.  Math, multiplication (grouping really), lunch, ate everything and sat with Quinnie, reading with  . . . someone else, and they worked on questions together.  When I ask about spelling -- 100% on last week’s 25 words -- asking if she does it alone with a teacher or with a group, she very proudly tells me she “has a group.”  

And then, Julia asks me what I did today.

She has done this a few times in the past weeks but it still is a surprise.  I scramble to make my day at Waisman sorting through information about special education to summarize into a single information sheet, sound exciting to her ears.  I end telling her that I learned something and she asks a follow up question!  First, she tells me that she likes learning and then she asks me ‘how much do I like to learn.’

And for a moment, I can almost be sure that one day I will really have a reciprocal conversation with Julia.

Of course, if she can really do that one day, she will definitely not want to live with me for her whole life.  And that makes me smile.

The student-speech therapist who has been working with Julia, under Linda’s direction, made a writing resource book for Julia.  It has adjective and adverb word banks, visual maps for writing paragraphs, and sample lists for generating ideas.  Julia used the word banks after she got home to write her “perfect paragraph.”  The topic this week was what she liked to do on a weekend morning and the content and sentence structure, even on this first draft, is markedly better than at the beginning of the school year.  

And adding three numbers is beginning to be a bit easier.

That brain is stretching and so, a bit of difficult behavior is not hard to take in stride.  

Tonight, I went to the fourth meeting of the Pocket in the Rocks workshop.  The work is going slow and although some of the exercises are interesting, I don’t know whether doing them -- lots of drawing and short talkings in small or larger groups -- offers much.  However . . . after tonight’s session, four of us around the table stayed for a few moments after the session.  Two of our number has missed the last session and the other two, including me, caught them up.  That was powerful, with the other woman who was there saying, “you mean, you feel that way too?” about her comment last month that she did not belong in this group.  

Just maybe, we found the key to the workshop.  Is it when we start sharing without need of direction that we find ways to build resilience.  

Interesting concept.  Possibly a good lesson?

Sunday, December 9, 2012

After so much woe, I got up and picked up the shades.  It is snowing!  First snow of the season.  Although I may not welcome the weather with such heartiness in February or March, today it looks like a sign from above and beyond to be full of good cheer.  My eclectic holiday mix is blasting throughout the house, Julia is putting up jelly window decorations, I am figuring out how to light a shrub.

Magic pierces the dark.  Light and babies are cause to celebrate.  So is snow and glorious music.

No, I don't believe that my micromanaging deity or dead true love is sending signs but I do believe that there is wonder in the world and it is available and I can claim it as my own.

Happy.  Merry.

Writing and not posting here.  At that point that I get to every so often of complete overwhelm.  Behind on so many tasks that those not necessary for survival are falling away -- do I really need a clean bathroom, a dusting before decorating, cooking?  Good?  I am not sure.  The day to day is stressful right now and I need to breathe into each moment.  Pain does not go away by pushing it aside, but there is a fine line to walk between the push and the wallow.

Holiday stress weighs heavily.  I lug the baggage of grief like an oversized carry on bag.  It slows me down.  Shopping for gifts which I began today and my list is very short, becomes almost too much of a challenge.  I started with Julia and did a small bit for Cheshire.  I can distinctly remember a different me who reveled in it all.  I know that life has changed and I might never get back to the energy of those times,  I brought some decorations upstairs from the basement yesterday and we will do a bit in the house today but truth be told, if I was alone, I would have nothing.  Maybe a candle.  I love the lights, the bright baubles on shelves and walls, but all of it is so laden with the past, with memories of what I don’t have.  

What I don’t have.  Living in the past with needs and regrets.  Just wanting to be there, not here.  On waking this morning, much too early and not going back to sleep, my mind jetted back to waking so many mornings when David was alive and turning to snuggle together.  So many times, sleep came again, and when it didn’t, there was comfort.  Damned physical comfort.  The delight of the beloved’s arms.  

Really struggling with lighting the Chanukah candles.  I can do it with Julia -- again, I would not do this alone.  I can say the prayer and tell some story -- Julia’s favorite book of all time is about Chanukah although we read it at anytime during the year.  And it just hurts.  Maybe because we have no family or community to share it with.  Maybe there are no new memories being created.  There is only what I remember.  I could reach out to some friends who would probably be very willing to share some Chanukah celebrating but I don’t.  What we did was just for us and it is hard to break that habit.  And the busy-ness of the season makes it seem like an imposition to demand to share someone else’s family time.  

Just breathe.  And again.  Breathe.

Sad right now.  It all still sucks.  Met another widow of two years at a Waisman grandparents’ support group (A work assignment for me.).  We traded a small amount of information and hugged and almost simultaneously we said, “It sucks!”  Ah, such eloquence.  Wanting to plan my way out of it and/or at least not wallow, stuck in the mire of pain.  Realizing that this is still a tunnel that I am slowly making my way through.  

I thought about how to cultivate joy last night.  I had no such thoughts last year.  I tried to revive my gratitude practice last week and found it unbearable, but I will write something, maybe just a complaint, maybe one day of gratitude.  I will grow more patience.  True, it is only because I have to.  I have been dragged kicking and screaming into healing.  Because, because . . . well, there is nothing else to do.  I am alive and I’ve promised myself to live full out.  I see now that I can’t will myself to heal and become whole again, but I cannot heal without a very strong will.  Finally, here is an excellent use for my eternal stubbornness!  There is a blessing to count.

Julia had a rather bumpy day yesterday.  Lots of not listening and loud no’s.  Ending with peeling the sole of her foot after she was in bed.  The last of the bug sores that are on her wrist are healing -- I’ve been medicating and wrapping recently redoubling my efforts to heel everything!  From time to time she has peeled the heel of one foot starting with that dry skin that all of us have this time of year but ending with a fiery red heel that must hurt to walk on.  She wears socks and gloves to bed every night and so she has to take both off to do this.  We talk over and over again about how she can call me to help her.  Actually, I was next door to her in my bedroom while she was doing this.    I struggle with this.  Really not sure why listening was such a challenge yesterday.

I hear the girl waking up.  Tears begone!  Breakfast, therapy, decorations!  I think I need a lot of candles today.

Sunday, December 2, 2012

1 December 2012


Mid-air heading east & DC

Traveling to DC to attend the AUCD Conference.  Two planes, an afternoon and most of an evening’s travel.  I sit and read the Richie Davidson book that I’ve been carrying around since the summer.  I take his 6 true and false tests about assessing emotional style.  At this moment, I wonder what my style would have looked like last year or the year before that.  The statement that stops me cold is “I expect that the next ten years will be better than the last ten years.”  I think I have always been able to answer “true” to that one.  I really can’t right now.  I’ve grown in resilience and regained some optimism.  I have some reasons and objectives and goals, but I cannot help but miss joy and the awareness of being the beloved.

Still, the switch that was thrown a few days before July 5th remains firmly in place.  I assess as resilient and focused, at least by my own appraisal.  And I am.  

Nice hotel -- Hilton in DC but I don’t know this town at all and I am scheduled almost every minute of my stay.  Tonight’s after-flight dinner and perhaps tonight after 8 are what I have free.  Two lunch times are taken, and if, perchance I really do network, I could fill more.  Right now, I feel a bit of a whine coming on about a full dance card but I know that busy and time filled is where my comfort zone is strongest.  And the fullness is my choice of exciting options.  

They don’t take credit card in cabs.  I have a map.  Maybe I’ll do the run/walk -- and you know where I will be -- tomorrow morning just to see the neighborhood.  The physical activity wouldn’t hurt me any.  Needing very hard to be back to activity.  I brought sweats and sneaker thinking this might be the time.  

Cable tv in the room and after surfing for 20 minutes, I have no regrets of living without it at home.  My junky tv comes in on Netflix and Hulu.  It’s all I need.  There is so much noise on tv.

Bedding down and sleeping without a thought to who is sleeping in the next room.  Funny how it is like turning off a light somewhere in the house.