rettsyndrome.org

Image Map

Monday, February 28, 2011

Rare Disease Day 02.28.11

Today is World Rare Disease Day, recognize with a quick $10 donation to RTT research: Text RETT to 85944 then reply YES to confirm - I just did!

Thank you!!

Monday, February 21, 2011

this one is called: we tried, but i cried all the way home.


But we tried! We attempted to pretend that we are a typical family of typical kids and met up with my wonderful cousin, her equally wonderful hubby and their two cuties for a trip to the California Academy of Sciences. I have wanted to go there for a while and my cousin invited us to join them on their membership which is a great deal because admission is pricey! It would have been $80 for just me, red and avery (kids under 4 are free). so thank you, thank you to my awesome cousin! What a treat. We even got to go in one hour prior to opening time-due to their membership.

The day started well enough, and the drive out to San Francisco was a breeze. Avery was quiet and happy in the car which is rare. We got there, (on time) and found the garage, got a spot right away and got out. Avery then lost it, and I began to sweat. I turn around to see the line and it was LONG. Disney long. Avery would not move. She was crying sad tears and having a total tantrum. So we took her kicking and screaming into this long line. (yes I know that typical kids do this too-but they can tell you why they are crying, Avery cant.) Luckily the line moved quickly and she stopped crying shortly after we got inside. We got her to calm down to look at some of the awesome fish and sea life they have there-what an amazing place. Nolan was loving it. And my cousins son, who is a few months older than Avery, showed us all the very coolest things.



This place is amazing. In one room, it was "snowing" every 15 minutes. Nolan really liked that part. He seriously got a kick out of it. But it was watching the video I took of him in the "snow" on our ride home that had me in tears. There is Nolan 2 years old laughing and playing and just being a kid and there is his big sister in a stroller, screaming and kicking and hitting. I just couldnt help but see what she COULD be doing-if Rett syndrome wasnt wreaking havoc on her body and her brain.
video
Then we ventured into the rainforest. I knew it would be hot in there but thought it would be a great idea. It was pretty neat-but there wasnt much time to see anything. Avery was screaming again by this time and trying to maneuver her in the stroller and keep up with Nolan was making me sweaty ANYWAY. I only caught one little girl staring at Avery and I might have snapped "keep staring!" , but maybe I said it in my head? Nope I said it outloud. Then just as we get to the elevator to get the heck out of the sauna, Avery decides to spit her clif bar all down her shirt. busted. "no food or drink next time ma'am!" I just kept my head down cleaning her up and kept sweating. That was it for us.

Guess who was giggling by the time we got back in the car? Guess who was crying?

We are holding on to the hope that the screaming will subside and we can try again to do the fun stuff regular families get to do, but I guess Ill give myself points for trying.

Friday, February 18, 2011

dear mommy

mom,

When you passed away, I was a new mom. Brand new. I had a perfectly healthy, 7 month old, chubby baby girl who you got to meet. You were there the day she was born. Three and a half months later you saw her again for what would be the last time. I had no questions then about what it was to be a mom. I knew it all. It was easy. I had recently decided to be a stay at home mom and was loving it all.
But, its been four years and a lot has changed. the novelty of being a stay at home mom has sort of faded. Of course I still enjoy it, but now there are two children-and extra issues.
I have been lucky, because of Avery's diagnosis, to have found so many other moms that have helped me so much in parenting her. But, no one is here to tell me what I want to know the most. How was it for you? What did you do with your time? Did you play with us (me and my older brother Dave)? Did we drive you totally nuts? Did you have a group of girlfriends you could turn to? What kinds of things did you and dad do for fun? What did you guys talk about? Laugh about?
Last night, I was looking for my cuticle trimmer in my nightstand drawer. A photo of you and Dad caught my eye. The date on the back was 1978. You were laughing and Dad was looking serious. I think it was Easter. You were sporting the Dorothy Hamill hairdo. Dad was wearing the gray hair well. You were just about to be 35, Dad had just turned 40*. Kind of strange because Dave is now 41 and I am 36...makes me realize just how much time we have left-even if life is cut short like it was for both of you.
Anyway. Im doing the best I can here without you and I suppose you know that. But I sure wish I could just sit down with you and ask you all those questions. And there is a lot more I want to tell you and thank you for-I really miss you. We will be raising a glass of fine vodka to you tomorrow night.
love
E

*Thank you google, Easter fell on 3/26 in 1978.

Monday, February 14, 2011

if you weren't there, you seriously missed out.

The McCartney table at Erika's Dream Five 02.12.11
Erika's Dream-a fantastic event put on by some wonderfully amazing people. I wish didn't have to exist but it does, it raises much needed funds to keep the doors to Katie's Clinic open. This was our second year. I didn't cry like I did last year, but definitely got choked up a few times. I once again missed looking at a single silent auction item, but I did get my hands on some amazing appetizers and delicious wine. Last year I was so nervous I missed all the yummy pre-dinner food.
The photo above is of the "McCartney" table. All of us were at the same table in 2010. how cool is that? and this year we were joined by Maren and Ryan-they are the adorable couple in the top right and are the parents of little leah who also has rett syndrome.
Im pretty sure our table was one of the coolest there (ok, fine it was the coolest). One of our good friends got into a major bidding war with the table next to us for one of the live auction items (some kind of golf deal) and it was incredibly entertaining. We laughed a ton. The auctioneer was fantastic and so quick. Our table raised a LOT of money for Katie's Clinic-thank you to our friends and family for being so generous and showing the love by coming again this year. So, if you weren't there-you seriously missed out. And you should come with us next year. We are going to try to fill two tables (or more?) instead of one. Let's do this.

Wednesday, February 9, 2011

no news is good news

He likes shoes.

Avery home from school "sick"

On the train at the zoo!

big boy bed!



I don't have too much to write about these days which I am thinking is a good thing! So here are a few pictures from the past week or so. A few quick updates: I started working out with a trainer at the gym! We get along really well and its fun. (no, it really is) I am meeting with him 3 times over 6 weeks so Im on my own once he shows me the routine and gives it to me in writing. This is good for me because now I am accountable to more than just myself. Im so ready to get into the shape I know I can be in! And Hawaii is right around the corner! Im so sore from our workout on monday. Still. So It must be working.

Nolan has a big boy bed! He LOVEs it. But, is still in his crib. We got the bed on Saturday but it didnt come with the frame. Thats what I get for ordering it over the phone-but I assumed it came with one! So on Monday I went and got the frame (what a rip off! $50?) and sheets. Nolan kept saying "I'm eh-cited!" but when it came down to sleeping in it, it was a no go. One of these days! The good news is that we were able to sell the upholstered rocker in order to cover pretty much the bed and a new rug!

Avery should start trying out a Dynavox at school soon! (this is a speech generating device) Im hoping that we will find one that works well, get one, and have her using it well by the time kindergarten comes around. Im hopeful!

Im taking Nolan today to look at a preschool program near our house. It is adjacent to our home elementary school where I am hoping Avery ends up (we won't know until early summer) which would make it super convenient. I have heard great things about it and they have an opening for T, Th and F beginning in March, 8:45-11:45. And it wont break the bank. They do before and after school care as well so if I ever get back to the working world, it would be nice to have had him there from the get go. Plus they supposedly have a "special needs" program which I will ask about today.

It will be nice to have him in school a few hours a day because it's already time to get planning for the Strollathon! Yes. Im doing it again! It will be on 10.02.11-still figuring out the location. We will be moving it for sure for several reasons. I'm hoping we can raise more than $72K this year and that we get more corporate sponsors! So if you know anyone that wants some business publicity for a GREAT cause, let me know!

Plus, Im writing a grant proposal for Katie's Clinic and nominating them for a Community Leadership Award-both time consuming tasks! I hope they both come through! fingers crossed.