The week has completely run away from me and now we are traveling in three ( yes, 3! Eek!) days. So, before traveling I am posting pictures from our NYC visit and from the Penguin Project production. And then I’ll get back to travel prep.
Favs from MOMA:
This is a picture of Julia walking to class. Her case manager sent it to me yesterdy. He wrote: “Hey, I was following Julia and a peer in the hall, talking like best buds. Not sure who her friend is, but I’m happy she has made strong connections with reg ed peers.”
It is a great picture.
When I looked at it, my first impulse, after a good hearted motherly smile, is to race to the story of Julia making a friend, going over someone’s house, talking too long on the phone, telling secrets to someone (not me), going to a sleepover, having a party. And then, I stop. Continue reading
A few of the many lovely, earnest, silly, wondrous, beautiful and outrageous adult faces of my beloved first born on the day she celebrates 33 journeys around the sun. Happy Birthday, my dearest girl! I am looking forward to snapping a few pics during the next 33.
It seems like a long time ago now that we, make that I, reclaimed Christmas. I don’t expect that the winter holidays will always be perfectly smooth but our last Christmas and then New Years cruise seemed to reset my holiday clock better than anything else. Distinct differences and concrete plans worked miracles. Prior to last year, I was not only missing our pre-death holiday ‘routine’ but also missing the friends with whom we shared many thanksgivings and a few Christmases—people and plans I thought would never change. Then there was change. Ah, embracing those Noble Truths.
Last Friday, another holiday clock ‘got’ reset— Passover. David and I enjoyed hosting seders since before we were living together. How many years ago was that? (Only Jan knows.) Our seders evolved and sometimes disappeared while we were in school or traveling. When we lived on Washington Boulevard in Indy, we had room for big parties and we indulged. I don’t remember when David started writing our Haggadahs or when we began expecting Cheshire to play or write something for the celebration. We cooked, many times for days. I think it was the only time I’d take a day off work to get ready. Continue reading
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
Ringing 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
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.
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.
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
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.
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
Chasing Joy 