Friday, December 24, 2010

Eve

My folks are not coming into town for Christmas. Mom had to go in for some tests, and they have made her very tired and ill. I decided not to go down, I don't want my mom trying to clean her house or prepare a meal - if I tell her not to, she will do it anyway and it will be too much. So, it's disappointing, but we'll celebrate when she's feeling better. But what to do? There's no point in me doing a Christmas dinner because I'm the only one that will really eat any of it, so I decided retool Christmas. Thursday night we went to see Cirque Mecanics, a fun show at TOHU (great space!).

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Today we hung out, played outside briefly, did a few groceries, then headed downtown for Chinese food. The kids were thrilled to be eating noodles in a restaurant and were pretty well behaved. Then we popped in the car and headed down to the Quartier des Spectacles to wander around the gorgeous snow globes. Along the way we also took in all the other Christmas lights downtown (not to be confused with the ones on SuperSexe).

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We came home, got on pjs, watched Charlie Brown Christmas, put out Santa's treat and made sure he had enough room to get out of the fireplace, then read Night Before Christmas and to bed. New traditions are good.....
What a great day.

Joy



On Wednesday I was driving to work and realised how calm and happy I felt. Cards would not go out on time, things would not be cooked, the house would not be spotless before the holiday and that was ok. That bit of the holidays that I missed for so many years because I was always so rushed and stressed, arrived for the second year in a row. I call it the Grinch epiphany, the time when I remember that the people who love me are my gifts and they don't care if their cards are late or my house is a mess or the food is simple. Those who mind don't matter and those who matter don't mind. It's a shame that I only enter this calm pocket after stressing out for weeks.
Throughout the day my mood continued to lift, and by the end of the day I was floating with happy, vibrating from within with this indescribable giddiness. Last year I had to make myself stop and let it happen, but this year it came all on its own - remembering what is really important, that I love and am loved in this world. That is all that matters.

Sunday, December 19, 2010

Things I meant to say



One of my friends stopped by today and over a cup of tea while we were getting caught up, told me that his sister had called to say that she had some bad news. He told me that his 15-year-old nephew had just been diagnosed with Aspergers. He indicated that the diagnosis was no surprise to him, and we talked about that. I automatically corrected about the term "bad", "Well, that not really bad news, just news", and we discussed the lack of resources briefly and his educational plans, and then moved on to another topic. He left, I took the kids out sledding, and then we came in and started some baking.

So I'm taking some cookies out of the oven, thinking about getting supper ready, and I look over at Ben, who is helping shell pistachio nuts with his sister. That's when it hit me.
If I'd been in a movie, there would have been that whooshing noise and some kind of blur special effect and then a flashback to me, almost five years ago, sitting in a metal chair in a small room at the Children's autism clinic. We'd just gone through days of tests with an array of doctors and PhD students. We'd been referred to the hospital by our pediatrician, and after an exam with audiology, we'd been sent to the clinic because they told us that even though they were sure it wasn't autism, it was the fastest place to get all the testing at once. I now believe that they tell parents that because they don't want you to bolt and not go ahead with the diagnosis.

So, sitting in the metal chair, watching Ben with the final assessor - the head psychologist - expecting that she was going to tell us that he wasn't autistic, just like the audiologist and our pediatrician and everyone else who had chimed in for months. But while Ben sat there creating a block tower, she turned to us and said, "So, Ben's autistic". There were words after that, sentences, paragraphs, but I don't remember any of that because at that moment the bottom fell out of my world.

That was the feeling that I relived in my kitchen tonight, that awful, stomach-twisting confirmation of what I didn't want to hear.

I know that on the grand scale of things it is not the tragedy of being told that your child is dying, or will suffer with a life of pain. I kept telling myself that over and over while what I was really thinking about was how he'd never have a neurotypical life. We all expect our kids to have at least our choices in life, if not more. We take for granted that they will have as much of a shot at education, relationships, careers, happiness, and fulfillment as we have. It is unbearably sad to suddenly think that their lives may be severely restricted. I used to stay awake at night thinking about the fact that Ben may never get married and have kids and a mortgage and a steady job. Honestly, sometimes I still do. But it doesn't terrify me like it used to.

Flash forward to me holding a sheet of cookies in my oven-mitted hand looking at Ben and I really did feel like the most insensitive person on the planet. Time, experience, education, and work have made me a person who no longer fears the spectrum and Ben's future. Part of me is so proud that I no longer see autism as a bad thing, just a difference, but there's no way I would have understood that five years ago. I understand the denial and the wishful thinking and the fears that we beat down and the lies we let ourselves believe because we so desperately want our kids to be "normal". The nephew's Aspergers may have seemed obvious to some, but to my friend's sister I'm sure it wasn't and I'm fairly certain that the bottom has just dropped out of her world.

I wish I'd been a bit more present today so I could have offered a kinder word and a warmer heart.

Friday, December 10, 2010

Moments of the morning

  • Watching my son, bleary and pyjama-ed, walk into the pantry, grab the jar of peanut butter and a spoon, and head to the dining room.
  • Listening to an improvised version of "All I Want for Christmas" substituting "cookies" for "teeth".
  • Passing by my daughter's room and seeing her laying upside-down on the bed putting on her tights.
  • My son's hat hair.
  • The dance my daughter did for me in the window of the daycare.


Yeah, I was late for work, no, I don't really care.....

Thursday, December 09, 2010

I am so in love with music right now....


Just finished listening to all six of Bach's Cello Suites performed by Jean-Guihen Queyras. His playing was marvelous - lively and crisp, playing that tore at my soul and then lifted it into the sky. I sat there in awe that anyone could store this much beauty in his head and bring it out from his fingertips. At the first break, Adriana turned to me and asked how anyone who is able to play something like that can get on with their day like a normal person. How many hundreds of hours of practise did it take to create so much wonderfulness that sang in my ears and thrilled me? I got out floating, wanting to hug the world and take it all into my heart.
It has been quite a week.

Tuesday, December 07, 2010

Ok.....



Admittedly, the snow is far less fun when I have to shovel out my car.
We just had our first storm yesterday - 15cm and gusting winds that created snow drifts over my knees in my front walk.

After work I headed down to Place des Arts and got a great last minute for the MSO. Bach, Brahms, and Bruckner. I almost didn't go, preferring to hibernate at home, but I parked underground to avoid any more car cleaning for the evening. The first half was lovely- but depressing if you knew what the contralto was singing, "O Tod, wie bitter bist du". Cheery. It ended with one of those Bach pieces that I hum a lot, Sleepers Awake. I rarely remember what it is, but it's catchy. The lady two seats over had on way too much perfume. The second half was Bruckner's ninth, unfinished. The second movement is very intense, emotional outbursts that then pivot into passages of calm. Nagano is so different from YNS, more controlling (but nothing like Dutoit was) and sometimes leaves the audience unsure of when it's ended.
Last Saturday I went to hear Bach's violin concertos and the Thursday before was a night of Bach and Ravel (with my lovely Yannick Nezet-Seguin). Tomorrow night is cello suites, I feel spoiled to have access to so much wonderful sound - it fills my ears and heart and gives me those moments of stillness and peace and awe that we all need to clear our psyches.



As usual, there are a few things on my mind. A few people in my life that I hold very close to my heart have given me some things to think about. I thought that I knew what makes me happy, but as events unfold, it seems that I do not know myself very well at all. I am surprised by where I find happiness and what that means about me and what I need. Perhaps what I am searching for is more of a state of grace within myself than a manifestation of it in another, and the patience, forgiveness, and understanding that I am slowly adopting (Rome wasn't built in a day people) is making it easier to love it all.