Thurs.

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I got a sad text from Dad at 2:30 pm today.  Mom was playing mahjong with her pals and his leg was acting up, he thought maybe he couldn’t make today’s tutoring session because it hurt too much to drive.  I suggested calling a Lyft for him thinking he’d turn it down, but no!  he was up for trying it out.  I called the first car for him to pick him up, but when he was ready to leave our house, he’d installed the app on his own iPhone and called a car for himself.

I’m impressed!  Less than 5 minute wait for door-to-door service, about $12.50 one-way.  Not super cheap – but less than an hour-long private tutoring session.  I’ve never ridden Lyft or Uber, but now Dad has.

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And we gotta keep it up – Vince texted us his Chinese exam score.  Sweet!

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Oh, and Vince wants you to know, this is the most exciting thing on the internet right now.  56 million views.

wed.

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I’ve been reading with interest the NYTime’s series on disability.  Today’s article is A Disabled Life is a Life Worth Living.  It was written by a man who has spinal muscular atrophy.  Though I’m not the one in the family with the disability and I doubt that Edda will ever graduate from Harvard like the author of the article, nonetheless, there were some sentences that I felt held truth for our situation:

The perseverance to live fully with a profound disability comes, I think, in part from honestly facing your own powerlessness and frailty, and recognizing how much worse things have been and could still be. This can instill a delight in the now. In living with a disability, you’ve already dealt with much of what other people fear most, and if you come out on the other side you are, by definition, a survivor. The resolve required, and begrudging acceptance of what you can’t change, may bring a kind of wisdom.



Sometimes Edda will walk in our living room to a spot where I’m not expecting her to be.  My back will be turned, I’ll be doing the dishes or shopping online and then I’ll turn quickly, see her in the new spot and my breath will catch.  In that moment, I don’t see her limited by her disability, I can only see her in the light of youth and beauty.  Oh Edda!  I hope you are having fun.  Love, mom.

Tuesday.

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Remember I used to take beautiful photos? Now I just take blurry, dark, ill composed photos with my phone.  Someday I’ll go back to taking beautiful photos again.  And I used to write beautifully composed blog entries.  Someday I’ll go back to that too – right now you get just random carp, I mean crap.

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Jeremy spent this evening rerouting all our routing wi-fi routes in the house.  He installed the Eero? Eevo? Evoo? system that Donald gave us for our birthdays in the house and I’m thrilled to report high speed wi-fi is coursing at a never-before-achieved psi through the piping systems of all our internet bound electronic devices.   Even our Nest thermostat (also a gift from Donald) is controlling our HVAC systems nanoseconds faster than it did before.  Vince is especially thrilled in his room, the better to stream, ummmm, whatever he wants to stream.  It’s also excellent at Edda’s bed – which was a frustrating place for our old wi-fi.  Sometimes Edda takes 45 min to go to sleep and then you are stuck there with hiccuping wi-fi trying to stream old Friends episodes while she’s hitting you on the head with her braced arm.  Thank you thank you Donald, for helping me with my Chandler Bing fix.

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Vince got some extra badges for himself tonight.  I’m looking forward doing some sewing.

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Monday.

The kids had off today for Rosh Hashanah – but I did not.  I did my clinical today at Casey House which is a 14-bed in-patient hospice.  I did not see anyone die on my shift there, but I did spend a lot of time with people who were probably 24-48 hours from dying.  Most people there were in their 80s or 90s, but there were a few patients that were right around my age.  It was a beautiful day here in the DMV, the first in about a week.  So some patients were able to enjoy the outdoors – they have this beautiful set up where you can wheel the bed out onto a patio with a quiet water fountain and lovely trees and lawn and there are nice benches for your family and friends to hang out.

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Jeremy took the day off, originally decided back in August to cover the child care day as I was going to be at clinical, but since Hawk and Mike were in town, it was an extra special occasion to take the day off.  They went to the Udvar-Hazy museum and then Honey Pig for lunch.

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Vince, Jeremy and Edda came home early after dropping Mike and Hawk off at the museums downtown.  But we all reconvened for dinner back at the house.

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Sun

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Vince and I did cook a nice dinner for our Chinese guests and introduced them to blue cheese and cherry pie.  I usually don’t do very much entertaining without Jeremy, so it was a triumph that I pulled off a dinner party of steak, potato, green beans, salad and dessert.  They left in the early-ish evening, and then about 10 pm, Hawk and his dad came in to spend the next few days at our house.

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We got Donald’s hand-me-down cell phone all wrapped up in an Otterbox case and some Alpha-glass.  Vince also put on top of the Alpha glass the screen protector that came with the Otterbox.  It’s like doubly-protected.  Tony, thank you so much for your old phone, it lived a very exciting life and it performed valiantly under very difficult conditions.

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Vince and I spent a good 15 minutes texting each other cat GIFs.

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Then we went to lunch at A&Js.

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The boys went to Montgomery Mall – Hawk, despite being a teenager, has never been to a mall.  So he got the grand tour – a movie and everything!

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Sunday night dinner – pizza!

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And an apple galette for the Jewish new year.

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And a mean game of Apples to Apples.  Good night!  See you on the other side…

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friday/sat.

Jeremy hasn’t been work traveling much this year, which is good for me, but not good for him.  With travel, he’s meeting people, talking about his work, making connections.  Without travel, he just gets to hang out with me.  I’m a pretty poor conversation partner when it comes to talking about Jeremy’s work.  It can be hard for me to sustain all the nuances about soybean oil in my head for the duration of the conversation.

So he got to travel this week (good!).  But 12 hours after he left the house, the internet went down.  I do not manage IT in the house, but I needed the internet to be up in the house.  It’s how I 50% support the family and Friday was the end of the fiscal year, all my work needed to get done that day (of course).  OMG.  Remember Donald got us new wireless routers? They are not installed because of some complex internet Jeremy infrastructure in the house.  Donald didn’t even understand what Jeremy had routed through the house.  I spent two hours on the phone with Verizon.  Another hour on the phone with my work IT.  Up (2nd floor) and down (basement) the stairs like 17 thousand times.  Finally, I got it up and running at about noon.

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*****

Friday evening, we went out with Mom and Dad’s friends from China.  They are here for a week-long East Coast tour.  Vince got to try out some of his Chinese.

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Today, we went diamond shopping.  Not often do I get to go diamond shopping.  I have never seen my mom so giddy and thrilled.  I’ve decided that mom would love to be a princess.  With a diamond tiara.

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And Jeremy’s back in town!  Lots of connections made, lots of new trips in the works.

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