Going for a walk.


Vince found these five fingered shoes on sale for $30 at the clearance sale at REI. He had them for a few days and then I couldn’t resist getting a pair for my own feet. If you can believe it, we got the same size shoe and they began as the same grey color (mine has pink accents, his green), his went to a bunch of camps with him while mine just went to the Gold’s Gym in downtown Rockville.

I know there are a lot of people who run with these shoes, I tried running with them on the treadmill, but I kind of was still heel-striking and so I was making an incredible racket in the gym. WHAM, WHAM, WHAM. Luckily it was during a quiet time at the gym – not a lot of people around.  But I got self conscious enough that I started running on my toes – which is so weird. So weird.


This is Vince’s totally lazy week at home. Nothing planned for days and days. Last year, we scheduled every week for him and there was no down time, he almost cried with exhaustion. Summer should be a time to become bored he insisted.  And I do think that’s true.   I told him about the summers I would spend watching taped prime time shows in the morning and then would watch soap operas in the afternoon while eating Souffer’s French Bread pizza. Yummy!

U Street, Addition, Garden

Rena & I came back to Washington DC for our annual family reunion.  We enjoyed it very much.  And we will head it back to Washougal, WA after about a week and stay there until late fall.

There, we plan to add an addition to our house to include a ground-floor master bedroom and a mud room. Before coming to the east, we have already done some ground work for this addition.  Rena likes gardening and plant some veggie.  Attached pictures are:

 1)  U street house, front view
 2)  Our left front yard (facing the house)
 3)  Mark-up for our addition on the left-hand side of the existing structure (facing the house again)
 4)  Access cut-out inside the house
 5)  Rewiring internet, phone, sprinkling system, gas line (all hidden inside the L-shape wooden panel)
 6)  Relocating internet, phone, sprinkling system, gas outside the house, with old places on the left
 7)  Relocating A/C outlet to its new location (orange in color)
 8)  Climentis
 9) Roses, etc.
10)Veggie Garden
11) Rena and her proud harvest

Probably it will take us at least 2 years to build.  We plan to contract out portion of it and finish the rest ourselves.  See how it goes.  Who knows?

Looking at planes…


On Sunday of the Lee family reunion, we went to the Air & Space museum near Dulles airport. Neither my dad nor my brother have been there – and they like to talk about planes (they are both kind of surprised that Vince really has no interest in airplanes) – so it was great to take them there. It’s really my favorite Smithsonian museum – lots of parking, a McDonald’s inside, and lots of space to run Edda up and down the corridors without fear of running over meandering toddlers, even on a crowded weekend.

We are standing in front of an airplane (of course, I’ve forgotten the name already) that my dad used to repair when he was in the Taiwan military for a year when he was young and in the military. We spent some time looking around the plane and my dad telling us how at least 2 or 3 mechanics were killed when they happened to be sitting in the cockpit seat and the ejection mechanism went off by mistake and they were flung into the ceiling of the hanger. Yipes.


Vince was a good sport, he’s been to the museum at least 5  times, but he convinced his grandmother to buy him something at the gift shop, so I guess the trip was worth it..




We all got up at 4:15 this morning to make a 6 am boat launch on Kent Island.  None of us had any idea what we really signed up for.  We just were hoping to get at least one good fish to eat for dinner.


Instead of getting just one, we caught twelve big rockfish – there is a 2 fish limit per person (Edda didn’t come along on this trip).  My mom loves to fish, but she mainly fishes off of piers and shores, so she’s getting only small little fish.  She’s never been out on the Chesapeake Bay on a boat (which is pretty incredible given her love of fishing and that she’s lived by the bay for over 40 years) – with a guide to help find the fish and help teach us how to use the equipment.  It was pretty incredible.  I wanted to talk to the captain about how the fish population has changed over his lifetime (he’s been on the waters his whole life), but he focused on how there is so much more technology – cell phones, sonar, etc. which I’m sure is important, but maybe I was searching for something more poetic and he wasn’t a poetic kind of guy.


I am always fond of this quote by John Smith about the Bay:

“A few Bevers, Otters, Beares, Martins and minkes we found, and in divers places that aboundance of fish, lying so thicke with their heads above the water, as for want of nets (our barge driving amongst them) we attempted to catch them with a frying pan: but we found it a bad instrument to catch fish with: neither better fish, more plenty, nor more variety for smal fish, had any of us ever seene in any place so swimming in the water, but they are not to be caught with frying pans.”
Captain John Smith, 1608


I just like imagining the Bay so thick with fish that you could imagine catching them with frying pans.  I know the Bay was really not well when I was a child, and the captain did mention that there was a 5 year moratorium on catching the exact fish that we caught today – so it made me happy to see that fishing was good for us today.  And I really have never seen my mother happier – I’m happy that I was able to arrange for us to be together to do this.


Lee family reunion part 1


It’s kind of odd seeing pictures of yourself.  I do not spend a lot of time looking in the mirror, so I don’t think a lot about how I look.  And then, on top of that, I so rarely see a photo of Jeremy and me together because I’m usually the one taking the pictures – we are looking good!  Grey hairs all over the place, but keeping it strong.


We didn’t make a reservation at the place we wanted to eat last night, so we waited until 7:45 pm to eat which is like 3 hours after my dad likes to eat and like 90 minutes after I like to eat.  We were very hungry when we sat down.

My brother took the red eye in from SF and came in at 6:15 this morning and made a beeline to our house (my parents picked him up).  We are selling our old Honda Accord to him- 2003, about 80,000 miles.  He’s driving it home after the Lee family reunion.   It was Jeremy’s beloved car before we upgraded to our minivan.  (I’m not sure getting a minivan is exactly an upgrade).  Jeremy’s been having a blast driving the car around the past week as we get the oil changed and fluids topped off.  Anyways, it’s a 10 year old car – but in storage 4 of those years (2 years when we were in SGP and the last 2 years since we got the minivan).  But Donald’s old car is a Honda Accord that’s 15 years old with 270,000 miles on it, so our old car seems like a great upgrade. 


The first thing Donald did to his “new” car was to install the iPhone mount.  No one I know has this installed in their car, but apparently everyone Donald knows does this.  I’m totally out of it. 


My parents are here –

My parents are here from the west coast for the first annual Lee family reunion. Reunion meaning just the four of us, Mom, Dad, me and Donald. Donald is coming into town tomorrow morning and we are picking Vince up from week-long camp tomorrow afternoon. We were going to do something more exciting, like go to Colonial Williamsburg or Great Wolf Lodge, but we decided to forgo the extra excitement, extra hassle and extra expense and just stay home and cook. So there is going to be a fishing trip where hopefully we catch some fish and crab feast and then a steak night. My mom and Donald really like fishing, so instead of spending money on hotel rooms and meals out, I figured we’d just spend it on this fishing trip..

Jeremy and I have been dieting pretty aggressively for a few month and also exercising quite a bit, so we are eating not very much these days, so this weekend will be a shock to our very little stomachs. You know when you go on a diet, the worst part is the first two weeks or so when your stomach hasn’t shrunk yet, and you are always so hungry. After a few weeks, if you eat more than the small amount you are used to, you feel full very quickly.

It has been such a quiet week without Vince around, he makes so much action and hubbub in the house that it really changes when he isn’t here. He’s gone quite a bit this summer, it’s the very beginning of him slowly leaving home and becoming his own person.

RSRT – movie night.


Tuesday night Jeremy and I headed downtown to the Rett Syndrome Research Trust’s movie premiere of a new documentary, Rett: There is Hope. It was a chance to for me meet Monica Coenraads, the Executive Director of Rett Syndrome Research Trust and Dr. Huda Zoghbi, who discovered the Rett gene in 1999; I’ve not had the chance to meet either of these women before Tuesday night. There are a number of Rett Syndrome charitable organizations out there, and they all do good work, but this is my favorite one, all the money goes to the research labs and that’s where I like it all to go.  I loved hearing Monica and Huda speak about the research, I do wish I was patient enough to read through all the interesting Rett-related science papers, but I am lazy.  And a little tired and nothing makes one fall asleep faster than a dense scientific paper with small print. 

I was surprised to hear them both back away from using the word “cure” which, when I started on this Rett Syndrome journey seven years ago (July 4th was our diagnosis day, I didn’t even think about it when that day passed), was a word I heard ALL the time.  I think everyone remains very optimistic about future treatments that will bring good quality of life improvements, but to have an all out cure within a time scale that is relevant to us or Edda is not very likely.  As Huda said, the girls, by the time they are even Edda’s age (and she is not that old), she’s missed all the chances for typical language acquisition, for developing fine motor skills, etc at the regular time, so it’s very difficult to make that all up again even if her MECP2 function was perfectly restored. It was great to see our local families turn out for this event, I think our local DC group is pretty strong and supportive of each other.  I’m happy also that after meeting all these folks, I’m still content that this is the right place for our donations to go.  Go science! 



Ruby’s breathing is more labored these days. She’s 12.5 years old now – and I’ve known her pretty much since she was born in the back of a Volvo in Austin, TX. She can’t walk as far or as fast as she used to, so I try and pay extra special attention to her. I bring her to barbeques with small children knowing that she’ll get to eat a hamburger or two fallen from people’s plates. I try to take her into the woods behind the house so she can swim in the creek for a few minutes. Today I watched her swimming and I remember those first summers in Austin where she would take a running jump off of a rock cliff and create an enormous splash into the deep water below. Today, she swam happily, but struggled to get out of the water with her fur weighed down with all that extra water in her fur. She came home and fell into a contented nap. Sweet girl. So lucky that we have each other…