Port Discovery.

Last weekend, we took Vince and his best friend from kindergarten to Port Discovery in Baltimore. There is a McDonald’s located right next door to the Children’s museum. We went 3 times to the McDonald’s over the course of the day – junk food all day long. Ugh. Makes one’s tummy spin. (At least I managed not to get ice cream in my hair.)


They have a 3-story rope/climbing jungle gym which is the most elaborate indoor jungle gym that I have ever seen. The two boys were freaked out and totally scared to go across the rope bridge that was suspended 3 stories off the ground, but Edda – she and I crossed the rope bridge and shimmied down a rope tunnel so high up in the air that even I couldn’t look down and laughed the whole way.



So I thought I had an appointment with Sen. Milkulski’s health legislative aide this Wednesday at 11, but after a series of unanswered emails, I no longer believe I have this appointment.

I had written IRSF in advance of this supposed appointment to make sure that all the information that I had gotten at the conference still applied. One of the major supporters for the $500,000 earmark is Ted Kennedy, who is undergoing treatment for cancer right now so I didn’t know if it was OK to still say that he was supporting the cause, since I guess he wasn’t actually going to be there on the Senate floor when someone yells out, “so does Rett Syndrome need half a mil?” because he’s busy fighting his own battle. Turns out that the major turning point of this earmark happens tomorrow afternoon at some sort of “marking up” session, so we’ll know by tomorrow if we’ve got it or not, so this appointment Wed. morning now seems pointless anyways. Sigh. I know I know nothing about how the political system works, but I’ll figure it out someday.

Summer Sunday.

Is it possible to learn to love a season? I have always disliked summers, I loved being in school with my friends and working on projects and classwork and I always found summer to be too hot and too long and too boring. My summers were often filled with odd jobs with no sense of purpose except to wait for the fall when my hectic schedule would start all over again. Perhaps I did not know how to relax.

Somehow this summer seems special, I think mainly because this is the first summer off my kids have had. In previous years, we’ve been on the Singapore school system – where it’s summer all the time and their big “summer break” is 6 weeks during Nov-Dec or else it was daycare which ran all the time.

It hasn’t been so hot here (although even writing that sentence I know has doomed me to weeks and weeks of unbearably hot days) and I see the carefree joy in my kids with late sleeping schedules, no homework, Popsicles day and night and having just a more relaxed schedule.

We just had a cookout with hamburgers and watermelon. Yes, summer isn’t too bad.



Went swimming yesterday at the pool. Edda does not love, love, love the water like a lot of other girls with Rett Syndrome do. I think she remembers how warm everything was in Singapore and everything in comparison is cold, cold, cold.


We put on this little wet suit to try and keep her warm, I think she did enjoy it a bit more once the suit was on. Jeremy is not a huge fan of the pool, as you can see, he’s trying pretty hard to protect himself from the sun.


Vince is slowly learning to swim. He has learned to propel himself forward in the water, but is still lacking the critical skill of taking a breath without needing to stand up.


Edda loved the snack bar, look at the blue tongue of summer.


Stick shift driver..

Jeremy’s flight came in at 6:30 pm tonight and I worked, worked, worked right up to the last minute trying to finish all that I wanted to do. This is the end of the quarter for me, I wanted to do a good job and so I worked ferociously today and I got done what I needed to get done.

I had driven to work so I could leave work and head straight to Dulles, because Dulles is not really accessable by public transit. On a side note, it only took me an hour to get to work even though I left the house at 7:30 am which is the peak of morning rush hour, vs the 1.5 hours it takes me via public transit. Sigh, there is no getting around that the subway is just slow.

I am officially a stick shift driver now, I’ve taken the car on the Beltway in rush hour traffic! I can downshift and I can handle stop and go traffic. It has only taken me 12 years to learn to drive a stick shift, Jeremy’s always had one since we’ve been together (he’s had 3 different cars in 12 years), and I’m sure I tried to learn to drive each and every one of them. Now I just have to learn how to take the curves without putting on the brakes.

Summer plans.

Rebecca asked in the previous post if Edda’s getting any services for the summer. Edda is qualified for ESY – extended school year, but it’s not extended by much. It’s from July 8th to August 1st from 9 am – noon. Other than that, Edda’s going to PT and OT once a week. We are still struggling to find an SLT that we like, but we can barely find anyone who is even willing to take Edda on, let alone find someone superfantastic.

On a fundraising note, I think I have an appointment with Sen. Mikulski’s (MD) office next Wednesday at 11 to talk about the $500,000 Rett Syndrome earmark. I don’t have an actual appointment with the senator (which I think would have freaked me out to no end), but I think I have one with the legislative health aide, which is better than I expected. I sprinkle the word “think” throughout my last sentence because the legislative aide emailed me and said “Wed. at 11?” and I replied “Great, how do I find your office?” and I’ve gotten no answer and that was 3 days ago. I wonder if I’m going to bring Edda. It’s smack dab in the middle of the work day, but what the heck, she’s up for an adventure I guess. What am I getting myself into? Apparently, I’m heading to Capitol Hill.