cheer & finals & loss

Saturday: My second basketball game in as many days.  No, I haven’t gone over to the dark side (excuse me, my basketball-loving Hoosier friends).  Julia is cheering.  Not perfectly by any means although pompoms hide many a sin, cheerleaders stand to one side of the basket and cheer from the side, and most folks are here for the basketball players. She is very happy.  Tonight she doesn’t even have ear plugs in. The gym’s echo is quite pronounced and the buzzer is incredibly loud and annoying.  No complaints from the girl.

I realize that it is me that wants and expects perfection before performance.  Julia and her cheer coach do not.  Julia is out in front of the crowd on her own terms.  Sometimes she perseverates on how she holds her pompoms and she does not stand as still as the other girls. And people do notice.  As we left on Saturday, various people told Julia that she did a great job.  Some of the compliments were accompanied by a knowing look to me.  She is being congratulated for her chutzpah, her sheer and absolute nerve to insist on being herself even in a line up of girls all the rest doing the exact same thing.  If there is pity, I refuse to see it.  This is a hard lesson for me—a lesson in letting her go and letting her be herself.  I would prefer that she show her independence by cutting up her food and sleeping in her own bed every night. I would prefer to let go of reminding her to go to the bathroom and listen and respond to people talking to her.  Instead, she insists on my letting her go in front of crowds with pompoms. Continue reading

might as well be dancin’

C31B34D9-4BAA-46A5-A5EC-1A41F0981A6DRinging in a new year in what might be considered the most classic, but for me the least characteristic way—on a crowded dance floor gyrating with a throng of strangers in party hats and noise makers to a band playing the ancient music covered by high school bands in the late 60’s (no complaints about the music. It was very delightful).  Before the parties heated up, Cheshire and I walked around an upper deck in the cool night air.  A few stars were out, we could watch the quiet dark sea and the wake made by our boat. It was my favorite part of the evening, perhaps of the cruise.  Minutes before midnight, we joined the throng dancing.  Twenty seconds before midnight we began counting down as if this was a novel experience. At midnight, music played, people cheered, hugged and kissed, balloons, streamers and confetti fell from 10 floors above. In a minute, we we stood knee deep in balloons and streamers. It was almost strangely satisfying. It was as I had always imagined. Continue reading

cruise day 3 – a day at sea

We embarked on Thursday. Our hotel was less than 1.5 miles from the dock and so we arrived by foot, each of us with back pack and pulling our carry on bag. Once again, Autism on the Seas met us at the first check in point and moved us through lines and crowds. There is something wonderfully familiar and comfortable about this cruise. The ship is not configured in the same way but most of the same elements are there, the mental maps are so much easier.  Julia and I were at ease much sooner and we were able to clue Cheshire in.

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It is great having Cheshire with us. A second person to interact with and boss Julia around, a lovely companion for me to enjoy. Last cruise, julia and I had a wheel chair accessible cabin. We booked late and some of those rooms had been released. Our cabin this time is standard and a lot narrower. We have a window and not a balcony. I miss the ability to be outside immediately and the balcony provides a few extra feet but we manage the tight space well.  I do find myself constantly straightening and putting away out stuff. Clutter happens fast.

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winter break travel: Tampa

Sunrise over water- a bay?- in Tampa. Not an extraordinary feat consider how little day light there is this time of year. A hotel on the water, the convention center, cars and trucks dot the visible highways and a lone kayaker paddles across the bay. Something nicely propitious about the sighting. We are in the tourist center, our driver from last night told us. Continue reading

eve of christmas

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Lighting the first night of Chanukah.

A reminder pops up on my laptop from Calendar: Christmas Eve.  Obviously, Apple’s Calendar is not able to look around this house.  Yet.  Something to be grateful for in a small way.

Facebook reminds me of all those past Christmas Eve postings—parts of cards, pictures in NYC with Cheshire and Julia, silly pictures of Cheshire’s friends here to support her through rough times, pictures of Julia in full Hogwarts regalia in Florida at the Wizarding World during our Christmas with the Mahoney’s (without our favorite Mahoney’s), trees and stockings and kind Santas who listened to Julia’s sometimes incoherent rambling wish lists.  One post from December 24, 2010, offers the beginning of what has been seven years of strained celebrations:

Julia and I are bedded down in Brooklyn. We are remaking Christmas. In a few years it will be ours again. Peace and love to my facebook comrades. Hug your partners and parents and friends and kids while they are close.

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wedding

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My niece, Shyla, and her long time partner, Ben, married on Saturday, August 5.  They have known each other for ten years beating our family record that David and I set knowing each other for six years before we married.  It was an intimate wedding at the home she grew up in.  Her brother and his wife who now live in that house generously gave their house and lives over to wedding preparations and festivities for a week.  Julia, Cheshire and I came in early to help with the setup and decorations.

Julia had her first real manicure and pedicure. Continue reading

graduation

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Julia graduated from eighth grade on Wednesday and had a pretty wonderful day.  She picked out her dress and the blue rose for her hair.  She is a kid who loves dressing up and here was an occasion. She was even willing to pose for numerous mother pictures.  The bus ladies were effusive with the compliments.  These two women who drive and help out on the special ed bus greet her every morning and appear to love her chatter.  Julia entertains them every morning. Continue reading

my major

Two deaths. One the wife of friend; the other the mother of a friend no longer. The first was a sound shake. A woman who was ill and being treated, who was expected to survive, to be healed. An unexpected death even though there was probably some scientific percentage that she would not survive. Like David. Twenty percent of those with heart transplant don’t survive. And we never considered for a moment that to be David.

We are all always part of the percentage. Continue reading

Catch up

img_5057I broke my wrist on Sunday. Of course it was my left wrist, my dominant hand. Aside from the pain and the splint and the doc appointments and the craziness of trying to figure out how to hook a bra, button up jeans and open pill bottles with one hand, there’s a steep learning curve of another kind going on and I have to grudgingly admit, I’m grateful for it.

For my birthday. I gave myself two presents–a creative workshop taught by a poet friend of mine called Spirit and Shadow. Her provocative questions are stirring my soul and disturbing my sleep. The other is an online course called Awakening Joy. Taught by James Baraz, it is a mindfulness class. This week we are put the intention of joy/happiness /contentment into the center of your life. Continue reading

christmas

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Coming home from New Years visiting of friends and feeling the contentment of both journey and home.  Needing a few quiet day to settle and catch up. Needing to make and put into practice some of the new year’s resolutions. Needing to organize to send out holiday cards-more on that later. Needing to figure out just how to plunge into the new year.  Then again, the plunge has happened.  Umm, am I already behind? Continue reading