It has been snowing since some time very early in the morning.  Just enough is on the ground to justify using my snow blower, more to make sure it is working and ready for the really big snows to come than to clear what is there now.  But I promised myself a writing this morning before anything else.  And so . . . 

On Saturday, I drove to Northbrook, IL, near Chicago, to see an eye doctor, Deborah Zelinsky.  Consulting with her is perhaps the beginning of my exploring non-evidenced based therapy/treatment for Julia.  Without explaining what I can about the eye care that Dr. Z offers, an online description  that is not on her website says:

The Mind-Eye Connection was created to fill the need for evaluation of interconnections between auditory and visual processing systems.   Most people don't realize that alteration of eyeglasses and/or contact lenses affects auditory localization.  Even people who have 20/20 central eyesight can benefit from peripheral and other sensory integrative processing.  In addition to the eyes themselves, we evaluate systems connected with the eyes. We emphasize peripheral eyesight and moving targets, and have a patient base consisting of routine eye care patients as well as people on the autistic spectrum, those who have suffered brain injuries and children with developmental delays and/or learning problems.

The exam was incredible.  All the regular eye testing was done and then some others.  Dr. Z, herself, is pretty much brilliant.  Using the tests and her observation and interaction with Julia, she told me and her intern about Julia and described her spot on.  Julia has trouble seeing the board in front of the classroom.  I see her squinting at things like her sheet music if it is not very close to her.  Dr. Z says that Julia has 20/20 vision but that her internal focus has kept her from developing the muscle strength to see at a distance.  Like, she doesn’t reallyHer prescription is pink tinted lens that are a slight prism which should get Julia to look out further and to encourage her eyes to work her muscles.  This is a very simplistic explanation but I cannot explain the workings of the eye the way that the doctor can.  

I did a good deal of research before I made the appointment.  LEND and my friends at Waisman have given me a very healthy dread of non-evidence based treatments.  I know I can suffer from wanting to believe that there is something out there that will make a world of difference to Julia -- to fill in her holes.  David was, for better or worse, so much more skeptical.  Possibly he kept me from a few foolish endeavors.  Now,   I must be both the dreamer and the rationalist.  

Perhaps that is why I was incredibly anxious as we drove to Chicago on Saturday.  At one point, there were snow showers -- not awful at all, but the first of the season -- and I was almost in tears.  I took many slow long breaths which helped my physical anxiousness but not what was going on inside my head.  

Julia did splendidly at the appointment.  There were a lot of tests and most of them as boring as all eye tests are.  Julia has never been one for doing tests that are not of interest to her and she did complain some.  She also allowed herself to be coaxed into finishing the tests which I have rarely seen.  The big pay off, that neither of us knew about in advance, is that her halloween Harry Potter glasses can be used for her prescription.  The way this therapy may go is that the lens will be changed every few months.  We will not know for sure until Julia uses the glasses for a few weeks and she is examined again.

When I asked Dr. Z what to expect, she would not tell me.  She says she does not want to prejudice me in any way.  This could sound rather like a scam but I trust this woman.  She read Julia like a book.  I’ve rarely seen someone work with Julia so well and so quickly.  I think she is sincere, brilliant, quirky and possibly is really onto something.  Well, I say “she is on to something”, there is a whole cadre of Neuro-Developmental Optometrists and an association.  It is not just her.  What I researched goes hand in hand with the idea of neuro-plasticity and bottom line, if it can give Julia a small hand up, fill in a few holes, it will be a miracle. 

I drove home, exhausted, not only from the amount of driving but from the emotion toll of the day, but I felt very much at peace.   I still do.

And Julia woke up this morning asking when her  glasses were coming!

The day is crisp, cool, green and blue and full of energy.  I’ve had good clothes on all day and so not doing any gardening.  And I need to get into the garden.  Julia is finished with therapy at 5:30.  We could go home and instead of rushing to get dinner ready, I could change and dig and allow Julia to hunt for bugs.

Ah, and bugs.  When Julia got into the car . . . before bugs . . . Yesterday, when I went to pick Julia up from school, she ran out of the building by herself!  It was the first time that she came out without an aide.  How to explain the small victory, forward movement.  Because transitions are such a challenge for Julia, leaving school could be just as difficult a transition as trying to get her to stop drawing.  For years, she has been the last kid out of school, sometimes with coat half on, or back pack half packed with her adult trailing after her with full hands or almost dragging her out of the building.  She rarely would say hello to me when I was meeting her and would refuse to say good-bye to the faithful grown up who had delivered her to me.  So, some of the challenge was transitioning and some of it was the shutting down that transitioning could bring.  The long term plan was to fade the grown up help so that she could leave independently like all the other kids, but I didn’t see it coming so soon.  Yesterday was the first time she came running out of the building, looking like every other 5th grader.  And today, she was very much disappointed because I picked her up again and she didn’t get the chance to run to the bus by herself.  Run to the bus by herself!!!

And the bugs . . . so, when Julia got in to the car, she told me she had been catching bugs and wanted to add them to her bug collection.  I asked where she was keeping them right now and she said in her jeans pocket.  Umm, well, they can’t be alive, I told her.  This was not good news and when I checked them out, it was clear that none of them were moving.  She was disappointed and decided that she had to figure out how to bring them home alive.  

What an interesting child.

I went to a Family Navigator meeting today and felt my usual lost, confused, ineffective, and just plain stupid since this was my first meeting of a project that has been discussed for months but is still in the formation process.  My task through that meeting was to breathe!  And to let it happen.  To remember that I am the student here.  No one expects me to lead here.  And I don’t have to lead here.  Reading this over . . . well, duh.  But this is my underlying processing.  To be competent, to be successful, I have to eventually lead.  And, wow, that is crazy.  

So, I put myself in these places where there is no way that I will ever lead in order to learn things that there is no other way for me to learn, and then I ensure that the experience will make me feel badly because I define success only as leading.  There may also be a reverse that is operating -- when I am in a place where I will become the natural leader, I do not value the experience because it is too easy.  So, I cannot help but fail if I intend to lead the Family Navigator project and I give myself no credit for working to launch the Special Ed PEG group because of course, I am the natural leader on that one.  

Acceptance, acceptance, acceptance.  Just who and what I am.  

I am studying on line for Safety and Infection Control Clinical for non-employee students and non-UWHC employees Exam that I need to work in the clinic.  It is not a big deal and I reviewed the material and took the “exam” last year.  I am not sure what I thought about it last year.  This year, I see all of the ways that David’s final sepsis was almost inevitable with his compromised immune system and ineffective gal bladder.  There is so much here that I don’t mean to infer -- no blame, no caregiver bringing in infection, not even our own unintentional load of bacteria, etc, coming into his hospital room.  But @#$## (much more fun than writing out a curse word and I don’t even know what curse to use), I read this stuff and wonder at how slim his chance were.  How much so much was dependent on a string of miracles.  How many miracles we experienced but how many more were absolutely necessary.  And we did not know that.  We thought it was all science.

It was so much more.

And there are so many miracles that touch me and my loved ones every day.

I marvel at spirit.  I look up in wonder.