On Friday evening, Julia and I experienced our first soft ball game.  I’ve signed Julia up for our local Challenger League (http://wmll.org/A1-InfoPages/ChallengerBrochure.pdf).  Kids with disabilities of all kinds are paired with kid volunteers, broken up into teams, given tee shirts and coaches, and play to the best of their abilities.  

We arrived very early.  Trying to be absolutely on time, I mistook the arrival time for volunteers as our arrival time, but the extra time allowed lots of time for Julia to get used to the surroundings and make leaf dolls.  The West Madison Little League has lovely facilities.  From what I gather, it is the boys’ facilities and most girls play at a high school which is not as idyllic.  This place was like a movie set’s dream baseball facility.  Three perfectly manicured fields set into gentle hills with one field up a slope on a man made plateau.  Bleacher near each field but not in excess.  A convenient barn/ field house with a porch and grass and flower beds.  Early evening at this place was beautiful enough to wring the heart of even a diehard sports UN-enthusiast -- which is me by the way.  Throughout the evening I needed to ask some very basic questions although I did not own up to total ambivalence to any ball throwing to catching or kicking sports.  

Julia was very nervous and very unfriendly.  There were a lot of kids and adults waving tee shirts, shouting directions and general milling around.  Wheel chairs bumped along over the turf, some kids moved without control or made sounds beyond ordinary speech.  I recognized the shell the Julia drew into -- the kind of shell which would have led to a melt down or some physical reaction a few years ago.  She kept it together but seemed to have no interest in the little girl -- same age, same height -- who was her buddy.  There was a practice game, just one scoreless inning, but taking enough time to feel like they played a game.  

Julia and her buddy, Morgan, started by fielding.  Perhaps this will develop into having something to do on the field, but most, perhaps all, balls that were hit never made it out to the field and so there was nothing game-related that Julia and Morgan had to do.  Instead Julia drew in the pebbled track of the field, at first in silence but then I noticed that she would look up at Morgan and talk to her.  I suppose the Morgan asked her questions or she wanted to talk to her about some dinosaur she was drawing.  After awhile, the team was called back into the dugout and it was their turn up at bat.  I lost sight of Julia, until she needed to find some water and one of the coaches took her to the fountain.  (I have to bring a water bottle next time.)  And then she disappeared into the gaggle of kids.  She went up to bat when it was her turn, took instruction from Morgan and the coach on how to stand and how to swing her bat. And then, let it fly when balls came at her.  She hit two of the balls -- one obviously a fowl ball (SP?) and the other straight out to first base.  (Had there been some playing skill among the kids, it  would have been an out.)  Julia and Morgan ran to first base and then Julia stayed quite engaged as she progressed around the bases as other kids hit balls.  She was jubilant when she reached home.  I was a bit teary eyed to watch her standing on third base, chatting with Morgan very comfortably with multiple exchanges, even nodding her head and definitely looking at Morgan when they spoke.  I wondered whether all the therapy and learning and practice had created this skill or how allowed it to surface.  Had it been an interchange between two neurotypical kids, it would have gone unnoticed.

After the game, we stopped at an ice cream shop, close to the field and stood on line with other players, volunteers and parents.  We ate sundaes and talked a little bit about playing soft ball.  Julia still says she doesn’t want to glove although I am sure she would like to use one if she had it.  I think one of her therapists played soft ball and perhaps could introduce her to catch with a glove.  And I’ve been playing catch with her in the pool and her ability with a slightly larger ball has soared.  

This was the first inkling that my decision to put less emphasis on therapy and more on activities with other kids is good for Julia.  Next up, violin lessons, but that will be in a few weeks.  

This is the beginning of the last week of summer for us.  Some school appointment, doc appointments, therapy for Julia and an orientation day for me, but there should be time until Friday to swim each day -- squeeze in two more private swim lessons -- and then, swim club is over.  We go to Upham Woods for a weekend camp out with church on Friday.  See Mary on Monday.  And school begins on Tuesday.  

This is the latest that I’ve begun a month’s writing.  Ever.  

And now where to begin.

Vacation?  31 July until 15 August.  A week at Rehoboth beach in Delaware with Lisa and kids with Cheshire and Chris coming down for the weekend.  Another almost week in Brooklyn with Cheshire and Chris.  We have been home for a week.

Julia did well most of the time.  We did parasailing and she was fearless.  We saw a sand sculpture competition and she spent days perfecting three little dinosaurs and a nest as a sculpture.  She also enjoyed playing bananagrams (I think) with Lisa and crew.  Julia finds words in a bunch of letter tiles.  Sometimes her spelling is not perfect but she is leagues ahead of me.  I see nothing.  I indulged her in collecting tickets in the arcade playing skee ball and other silly games.  She is not great at skee ball yet but she improved during the week.  

Towards the end of the vacation Julia had a few nights when she could not get to sleep.  One night, she really frustrated Chris and he physically removed her from the bedroom and deposited her and her bedding in the living room.  All was fine the next day and I think Julia learned a little bit of a lesson.  We enjoyed walking the city.  Julia thought it smelled bad.  She is not wrong but we all kept explaining that it is not “bad” just the city in the summer.  I saw two old friends, we did not go to the statue of liberty (sold out on the days we were there), went back to MoMA and found the Museum of Mathematics (very cool) and ate our way through several ethnic neighborhoods.

We were both happy to get home and back to a house the didn’t need to be shared and more toys than either of us could carry in our backpacks.

And because I am writing this a week after we are home, I am leaving out as much as I am writing.  Julia did some neat stuff that she has never done before -- she ordered popcorn at the candy concession at a movie theater as I waited on line and since we’ve been home she was been responsible for packing the swim bag, a chore that I would not have trusted her with before we left.  The sores on her right wrist -- scars from the two year old bedbug bites -- are almost closed and we’ve been leaving them without bandages during the day hoping that they will tan a bit.  The scars have flattened out more than they ever have and if she will leave them alone, they may begin to fade.  However, she has scratched bug bites on that same arm.  Scabs are just too much of a temptation.  We have had words -- I’ve yelled more than she did -- and for a fews days now, she has professed that she will never pick again.  Swimming helps, the ocean helped.  And I am still hoping for healed arms before school begins.

Proof of my standing as an eternal optimist.  

Julia will be taking a few private swim lessons at the swim club in the next two weeks.  The instructor is a tall, very experienced, enthusiastic, rather loud and demanding, guard who teaches kids on the swim team.  I haven’t seen him teach anyone like Julia but he is doing great with her.  Figuring out how to engage her, urging her on and making her answer his questions.  I think he sees how comfortable she is in water and how much of a natural she is.  I am hoping for a good experience and for her to take instruction.  

Throughout the summer, Julia has been doing physical therapy exercises to strengthen her core and her legs with the goal of turning her right leg that turns in when she walks and runs out and her gait more stable.  We keep doing the exercises -- sometimes 6 a day, sometimes less -- and I may be seeing some progress.  She can do 30 crunches, 20 leg lifts, and can walk half way ‘round the block with her feet turned out to a modern dance first.  She can swim about 2/3 of the length of the pool. 

Getting back to vacation, my vacation was much harder than Julia’s.  I had rather an awful melt down during the first weekend which took me days to recover from.  I had trouble sleeping and no desire to be with the very people who have sustained my sanity for the last three years.  Right after the melt down, I just wanted to go home, a feeling the lingered in varying degrees as the vacation wore on.  We did some fun things but I could not leave the despairing pulling feeling.  I was the little guy with the black cloud over my head or the person walking in the ditch.  

This was not awful.  These feelings are not new but I thought I was past the worst of them.  I guess I am not.  

On Wednesday, during attachment therapy with Marilyn, I talked about some of the feelings as Julia worked on her trauma workbook and I was able to make some sense of the experience.  I want to try to make a list so as not to forget what we talked about.  Lots of self-pity here.  Also, I am not happy with, proud of, or feel like I had some sort of right to impose my misery on Lisa and Cheshire during vacation.  And I am grateful that they did not tell me that.

1. I am single, visiting and living in the couple worlds of my beloved ones.  I used to be like them.  There was nothing special about what we were; there is nothing special about what they still are.  It was comfortable and brought me great joy.  And for most of time I knew David, I had no idea of how much joy our simply together existence provided.  I am different now and being with Lisa and Cheshire emphasize my differences.  It can be gut wrenching hard to stare those difference down and embrace them.  Clearly, I was not ready to on vacation.

2. I am deeply exhausted.  I don’t just need a few night’s sleep, I really need real respite and renewal -- weeks, months, maybe a year.  I will not get it, at least not in the foreseeable future and taking a break from routine life in Madison throws light onto my needs.  I have learned to make the best of soul exhaustion at home.  Quest retreats, evenings out with Mary or Maria help tremendously but the well is not full.  The ordinary stresses of being away from home plus the recognition that my exhaustion of the soul is far from temporary were overwhelming.

3. I visit Lisa and Cheshire in order to recreate, or create anew, family.  But what I am trying to create is what I had, not my new configuration.  Up to this point, spending time with Lisa and Cheshire has allowed me to sink back into the family that we had.  It was as if David was in the next room, had gone to the store with Nick, or was not awake yet.  I cannot summon those feeling of life before anymore.  I cannot use Lisa or Cheshire to breathe life into my fantasy of life before.  And I don’t quite know what I am doing with them.  Yes, loving, yes, support.  It is me not either of them.  Both are willing to support me, neither understands how because I have no idea what I need or who I am becoming.  Also, I have not been aware that this was what I was doing.

4. Being with Lisa and Cheshire throws me back to David and all I can think of is how complete we were are a couple, as a family.  We were a closed set.  We (and the “we” expanded and contracted as need be) could be alone and not lonely.  We were complete in ourselves and we could be open to many more.  I am missing that feeling of being complete.  I am desperate to recapture it.  And I never will.  There may be a new complete or a different complete but not the one that I knew.  I am still half of, an amputee of the heart.  I know that I can change and I didn’t know how long that road of change was for me.

5. I am comfortable visiting Cheshire and Lisa and very grateful for that comfort, but there is nothing new or challenging with them.  I’ve wanted both the challenge of a new place, the thrill of learning something new or finding that perfect meal or mountain and the comfort of those who love me best.  In short, I have not travelled since my week on the Isle of Wright the month after David died.  The thrill and challenge have the potential of taking me out of comfort, of knocking me out of my self -- self-pity, self-interest, selfish ways -- which has generally been very good for me.  Perhaps it is what I need now, even more than I need comfort.  

6. I lost more than David.  There are no more grandparents and few elders.  I don’t mean that I always valued my elders, spent hours at their feet listening with wrapped attention to their wisdom, but they were there.  Now they are not.  My family who are available to visit, support, and take care of me is very small.  Smaller than is comfortable.  By melting down with them, I risk alienating those to care the most.  How stupid is that?  And I know how stupid that is.

Today, David and I would have been married for 33 years.  Another anniversary.  I don’t have strong feelings about it today.  Another fact, a sadness to be sure, but not a reason to postpone the journey.

written 28 July 2013

Thank you, Linette, for bike advice.  When we get back from vacation, I will start investigating.

Ummm, good to have a tantrum on the page now and then.  Keeps me humble.  Embarrassed to be sure, and humble.

After feeling so very sorry for myself for a bit of that day and the next which was yesterday, I picked up and started again.  Here is my practice in blinking capital letters.  Yesterday, when we were meditating was had a monkey dog.  Sometimes it is Julia who moves around during out whole sitting time and when we are finished, I try to explain why we keep still.  I call it monkey body.  Sometimes it is me who cannot keep my mind clear or on task or listening to the guided meditation.  I tell Julia about monkey mind.  Yesterday, our very old and infirmed little dog came onto the porch as I rang our bowl and she moved around, made various huffing and whining sounds, stepped on everything that was on the floor, and knocked up against each of us.  In the final moments of meditation, she settled herself on the back of Julia’s pillow and promptly went to sleep.  And then it was we humans who disturbed her morning nap.  It was hard to concentrate but I let us just deal with the disturbance.  When the timer went off, I told Julia about monkey dog and I think that the message came across so much better when Julia was the one being disturbed.  Today, at the end of a very quiet sitting time, she announced, “no monkey dog.”

I had to go to the craft store to buy some tacky clay to put up some of Julia’s drawings -- the play room is finally cleaned, I am almost finished going through and filing away all of Julia’s papers from the last 6 years of school.  I had taken down some old drawings and I’ve been challenged putting some of the new ones up.  I had matted (in a very amateurish way) the pictures that Julia made for her Georgia O’Keefe project.  Now, I can’t fine a way to get them on the wall without nails.  Tacky clay which was my salvation prior to this, keeps matted drawings on the way for a day or two.  

Julia’s OT had given Julia a “knitting nellie” (See http://spoolknitter.blogspot.com if you don’t know what this is.  Also, this blog has good ideas when Julia’s knitted chain gets very long).  I am not a knitter by any means which I generally take to be a personal failure because my mother, aunt and grandmother did all sorts of needle work and tried to teach me again and again.  I don’t know why I never got it.  Anyway, when someone gave Cheshire a knitting nellie, someone else got it started for her and she did it off and on forever.  I am sure there is a mile long chain somewhere in her boxes in the basement.  

So, now it is Julia’s turn, and believing that all one needs are really good directions, I took out the nellie, found youtube directions and struggled.  I had to start it a few times before I got it to a place where Julia could take over but it was too tight, too small and the wooden needle that came with the nellie broke very quickly.  Julia has very good fine motor skills but this small nellie seemed to guarantee frustration and failure.  I thought that if we could find something bigger, it could be easy.  Julia was clearly disappointed that the one she had wasn’t working.

Enter the sales lady at the craft store.  Every so often, I meet a sales person who can listen to an inarticulate description of some need and come up with the perfect solution.   I was truly inarticulate . . . bigger . . . easier to manipulate . . . less frustrating . . . and she thought a moment and led me down a jewelry aisle where she picked out a plastic knitting nellie (called something else) that is meant to be used with beads.  The prongs were farther apart, the tube is bigger and the whole thing is plastic and clear.  I watched the video instructions again and now Julia is knitting.