Month: November 2013

Vince is reading The True Confessions of Charlotte Doyle for English class (his edition has a picture of a wind-swept girl looking wistfully off into the distance on the front cover which I don’t think makes it very inspiring for middle-school-aged boys to read the book). We’ve taken to reading the books he’s been assigned with him to help out with the tricky words and to work through some sentences he may not understand, he’s not the quickest reader and he has a touch of dyslexia – same as Jeremy.   I did this for him for his previous book – Tuck Everlasting.  Jeremy’s taken over for this book.  He’s a little behind on the reading (isn’t everyone always behind on the reading?) so this photo was taken at 9:45 pm, far past his regular bedtime.

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Girls make the best engineers.  After a lifetime of being in male-dominated classrooms, it’s quite an experience to be in nursing school. 

Someday I will tire of using these photo filters on flickr, but right now they amuse me.  It’s been beautiful these past few days – especially Monday when the temps flirted with the 70s.  Ruby certainly enjoyed her mid-day walk.

I went to a few study sessions at school today – normally I skip these in favor of doing my regular job which – you know – pays my mortgage, but there is an exam tomorrow which I needed some insight on, so I went to the study sessions and now I’m skipping class to get back to work in a few minutes. 

I am trying to juggle a lot of things and when I actually say them all aloud to interested parties, it seems really crazy – but I’ll let you in on my secret – I’ve really lowered my standards.  So I’m not doing as well as I’d like in school, nor am I meeting my usual production levels at work, nor am I micromanaging my children’s social and academic life and the laundry is never folded (although it might never have been folded promptly even when I was doing much less) and so everything is a little at loose ends. 

I’m really looking forward to Dec 15 when the semester is over and I’ll get 3-4 weeks of downtime. 

Look at this handwriting!  So beautiful.  I’m a little jealous.

We’ve been meaning to take the kids to Penang in Bethesda because it has all the dishes we loved to eat when we were living in Singapore.  When I ask Vince about his memories of Singapore, it’s clear he still has a bunch, but many things he can’t remember anymore.  It’s hard to remember things that happened to you when you were 3 or 4 years old. 

We went to Penang to celebrate Vince being on the honor roll this past quarter.  It’s been a hard first quarter of middle school for him – the amount of schoolwork that he needs to do has really been overwhelming and it takes up a lot of his time.  There have been tears and less time with his pals just goofing around. 

Jeremy’s cousin-in-law Christine has three pieces of advice for all the single ladies looking for a husband.  Rule #1 is that he be driven (although I think driven is too strong of a word, I think maybe responsible or willing to step-up is better) meaning that he doesn’t just sit on the couch eating potato chips while you are working really hard trying to keep it all together.  Rule #2 is that he treat you like a queen <- this is a good rule.  The third rule is a little off-color so not really appropriate for a family-friendly blog, but if you ask me in person, I might tell it to you.  I think Christine is pretty much spot-on, but I really like my own 4th rule: make sure your husband is really good at IT – because a household really only runs as well as it’s access to the internet.

This weekend Jeremy spent the weekend maintaining and upgrading our computer systems.  He enjoys it so much that not only does he do all the stuffs here at home, but he’s also pretty much taken over the IT department at his work.  The photo above shows that he’s working on taking care of 4-5 computers, 2 of which don’t even belong to us because our neighbors have figured out that he’s willing to spend a Saturday futzing around with Windows 8.

A lot of computer maintenance is waiting around for things to load or restart, so even though a lot of it took all day, not much of it was active time.  Both of us are swamped at work, Jeremy just has a lot of projects going on and is spending weekends working (which is very rare for him, he’s not one to work more than 40 hours) and I’m behind at work because nursing school is taking waaayyy more time than I thought it would, so we both worked a lot of the day on Saturday.

Out of the handful of Rett Syndrome charities out there, I like RSRT the best simply because their financials are pretty transparent and they spend the overwheming bulk of their money on medical research. So I feel like when I ask my friends to donate their $ on behalf of Edda, that their money is going straight to a lab full of pipettes and test tubes and Sharpies and DNA polymerase – all things I like and am familiar with.

RSRT recently put together this video for one of their largest fundraisers. It mentions that all Rett girls are smart and clever and trapped in their uncooperative bodies. That they all have something to say and we need to find a cure in order to release them.

I think that the gene mutation for Rett Syndrome impairs a fundamental function in all  of the neurons in Edda’s brain – that her cognition (her “smartness” or her “cleverness”) is actually very low.  It’s not to say that she should not be a valued member of the community – that she is not worthy of our love, attention or committment as a society.  It does not mean that she is any less than the rest of us.  Frankly, if if was so important to be smart or clever, I think most of us would be standing on the wrong side of the line of the ground because aren’t we just all bumbling around making mistakes and doing stupid and silly things all the time?  (Well, maybe just me.)

And I sometimes think that I’m the only Rett parent who is relieved and hopes that Edda doesn’t understand how much she’s missing out on – that she’s happy with her very limited and circumscribed life and not pining for all the things that she’s missing out on – true, deep friendships full of secrets and and gossip – running through a field in the bright, fall sun chasing golden leaves – finding a secret hiding place on her own where she can read a book for hours at a time with a bag of M&Ms – and dancing and dancing – and taking a biology class with a really great teacher, like so many great science teachers I’ve had, and learning about evolution and gene mutation and meiosis where the whole trouble with the missing guanine began!

Nothing like after a long day at work to go to my parents house for a great home cooked meal (delicious!) and a 45 minute lively discussion on Obamacare. Oh how my dad enjoys nothing better than to engage Jeremy in a head-to-head discussion while I cringe and go looking for some ice cream. Tonight was better than usual – they agreed on some points – and everyone stayed in a good mood.  Maybe it was because the pork was so yummy.

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Look at Jeremy’s awesome sweater.  Brooks Brothers!  8 dollars from the thrift shop.  Poppin’ tags!  Jeremy thought it was a little loud for everyday wear.

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This is a day for outfits – out of my usual tee shirt and chinos into a dress and heels.  Inspired Vince enough (he was home sick today) to take a quick photo.