festival of light

IMG_2027Quiet holidays.  Tonight, Julia and I are home.  We’ve been in all day.  No rushing around.  No therapy.  No school.  And especially, no shopping.  As is my preference, I’ve done as much my gift buying online. I am no fan of the frenzied holiday stampede although I admit the need to examine with eyes and finger some potential purchases.

Kinda’ rainy and wet.  Not cold but damp.  We did school work for hours, studying for a short story test and a social studies test on immigration.  It takes a long time to study for anything. Julia will take the modified version of each test, but she is learning concepts and some abstract ideas (short story genres which would make David smile.  I think.)  She slogged through spelling.  The spelling part comes easily but the definitions and sentences can be a struggle.  Some review math.  Her special ed teacher works with her on math this year.  She teaches in spirals, a new topic with lots of practice and then some review of operations or number theory or money or time.  Progress is slow but notable.  At least, to me.  Reading comprehension is the same.  Of course, there is cello practice.  Julia is working through a bunch of easy holiday tunes.  She wants to play them for her sister when she comes home.  Very sweet.

A theory about Julia’s learning has been stewing inside me.  Julia was, for such a very long time, closeted inside her own world.  She did what pleased her and could be very busy at it but the impulse to do what she did came solely from inside.  (Ironic considering what I last wrote.)  She took in information, like dinosaur names and pictures, that were essential to her activity (with clay or pencils), or like how to dress herself or pour a glass milk for herself when I stopped doing it for her.  She did not; however, open her arms and gather big bunches of information the way that typically developing kids do.  Typical kid brains do more than intentionally gather, they absorb sights and sounds and bits of trivia without even focusing on it.  They pick up skills and habits and idiomatic expressions like a good pair of black pants picks up cat hair.  They absorb their environment like cartoon vacuum cleaners sucking up entire settings.  Julia does not.  She has not generally been curious about the world, never has been, and she has learned deliberately (I am tempted to say “only” but that would by hyperbole.) the things that her adults decide to teach her.

A good example of this was what she knew about kitchen appliances.  She’s lived with a fridge and stove and dishwasher and sink since she was 5 and a half.  I cook a lot, as did her father when he was alive.  She had a toy kitchen with a stove and we used to play making and eating meals together.  However, when she was about nine, I asked her to bring something to me that was next to the stove.  She had no idea of where to go.  Julia is not stupid by any means, but up to that day, she had not noticed the stove, or at least, had not put a name to that thing that was near the window in the kitchen.  I may have had to warn her not to go near the hot oven when she was very young but she was never asked to cook or heat water or check on the pizza. Typically developing kids would have noticed the stove by 9.  They might still not have had much or any direct experience with it but they would notice adults cooking or peeked inside a pot or read a story in which some animal character was cooking or made the connection between their toy kitchen and where their parents prepared meals.  A typically developing kid would have put what they saw and played make-believe with and read and possibly asked about together to have an impression of a stove.  And they probably would have put it all together without a conscious thought.

What is it like to need to have direct experience of every single thing that you need to learn about?  What is it like to live without being able to unconsciously put all the pieces together to understand the world you life in and the people your interact with?  For my part, I can quickly get overwhelmed by the volume of things I  need to teach Julia to be able to function in the world.

So much of Julia’s therapy, the intensive kind, social skills with other kids and her vision therapy, has been aimed at opening her up to the world.  There is a lot of direct teaching but there is also an effort to instill in her global curiosity.  Social curiosity.  There is still much that does not interest her, that she doesn’t notice or lacks curiosity about when she does, but over this year I have noticed that there are places or circumstances or times when I see a inkling of curiosity.  I noticed it this summer at Girls Rock Camp and Camp Awesum and also as we travelled.  She was ‘like a kid in a candy shop’ at the Egyptian Museum in Turin — sometimes begging me to look at what she spotted first.  She also reads, constantly if I’d let her.  Little by little, her noticings of the world and in her books adds to her encyclopedia of direct experience.  Little by little, she is acquiring context.  Possibly it is still only the context of intentional personal experience but a context, a view with a periphery allows for some inference, some depth of understanding.  And, I pray, for curiosity.

It is almost dinner time and I’ve lit a fire.  Julia is working on bracelets for her American Girl Doll.  We lit the Chanukah candles.  We’ll have easy leftovers soon.  There is no sound but the fire, my keyboard tapping and Julia’s crafting noises.  I notice that this quiet, this lovely, busy quiet is so much like my old life, my life with David before Cheshire, our life when our family was just 3.  This instant, I feel like I have not been quiet in this way for five and a half years.  Is that possible?  There were things that I stopped doing after death—reading for pleasure, interesting cooking, real gardening—but I was aware, for at the most part, of what I was missing and I was grateful for return.  This holy quiet is another return.  Another that I had forgotten and did not know to miss.  It also reminds me how quietly David and I celebrated many holidays.  Perhaps there were trees or candles, dinners and movies.  Perhaps not.  Perhaps we were only sitting, curled up with books or typing on machines or scribbling in notebooks.  Those were our holidays.  Many of them. Sitting in the same room, a shared sigh, separate solitudes.

There is a simplicity in this quiet.  Not much is required to make it complete.  Only everything.

Happy last night of Chanukah.

[Addendum: Chanukah is over days ago but the week has been busy and it has taken me far to long to finish this post.  Happy to all!]

One thought on “festival of light

  1. Hi Suzanne. This is a beautiful, beautiful story. I was going to call it a “post”, which it is, but it’s just such a lovely description–story–of your evening with Julia, her learning, and your holidays. Cheshire is coming to Madison for Christmas? Matt got home last night, so I am happy and content. He doesn’t start working until Tuesday, so I’ll see him–at least when he’s not running around with friends or sleeping. Hmm. Between friends and sleep, will I see him? I,guess we’ll find out. I slept in this morning, but I’m pretty confident he won’t be up until noon or later. Life with a young adult! Happy Hannukah and merry Christmas!

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