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Monday, December 20, 2010

2009...oh, 2009.


(this was shortly after we put up our tree)

Christmas 2009 came just 46 days after learning that Avery had tested positive for Rett syndrome. I was still waking up in the middle of the night and immediately thinking: "Avery has Rett syndrome. Rett syndrome?" After looking back at my posts from this time last year, I can see that I was trying really hard to feel, no, to appear "normal". I was using an awful lot of exclamation points!!!!! It all comes across like "heyeverythingisokoverheresodontworryaboutusonebit!"
When in reality I was so scared and confused. Im so glad I blogged about it all because otherwise Im not sure I would remember it. It all seems a little foggy in my memory. It's because everything had changed but really it was all still the same and that's just a strange feeling to have. I had so much on my mind-trying to figure it all out, seeking out people to help, researching, making Dr.'s appointments, firing Dr.'s for doing their jobs poorly, getting new Dr.'s and going to those appointments. I think I was also doing a lot of trying really hard to make other people not feel badly for us. I didn't want to feel badly for us-so no one else should have either. That's what I was thinking. But things were different last year. See Avery holding that DVD in her left hand? She cannot do that anymore. It's not possible. And even though I knew that could (probably would) happen-that Avery would lose some if not all hand function-I still have a hard time believing it did. Im so happy she can still use her right hand pretty well for now and is picking up certain toys and can hold her fork (with lots of encouragement). Last year she wasn't taking a single medication (maybe for allergies) and now she takes 4.

(christmas morning, holding a new DVD in her left hand)

But she is still just as happy (for the most part) and even prettier-if I could just get my nice camera fixed Im sure I would get more proof. It takes a quick shutter to get a shot of her smiling when she is moving around at warp speed. And she is getting some of her words back-in fact we just heard BUGGY today several times. So no feeling badly for us now either!

!!!!!!!!!!!!!!

8 comments:

The MacDonald Family said...

I have loved reading about the Christmas's over the years, the words are tough, hearing the regression breaks my heart, I love the pictures, sweet Avery gets prettier every year! I hope you guys have an amazing Christmas this year!!! And a wonderful New Year!! Hugs!

Colleen said...

I honestly think that you had the rough of the rett years, the crappy regression. I love hearing the stuff that she is starting to do again!!!! So encouraging. And I couldn't feel bad for you, you get to be friends with some of the coolest people on the planet. Merry Christmas friend!

Erica said...

Thanks Bridget and Colleen. and you are right, C, I dont need anyone feeling bad for me with friends like you guys!!

Aline said...

Dear Erica.
I am from Brazil and my Maria is an angel too. She has the 294x mutation. I just read your words about last XMas and I fell just like you. Las year, Maria was able to hold her toys, but she is not anymore. But she seems to be much more happy and her comunication is better. She smiles a lot, and she is repeating some words. And its just fantastic how I am more and more im love for her.
Aline

roni said...

Erica, I love what you and Red are doing...you are a wonderful mom and dad and have great inner strength. You won't be given more to handle than you can actually deal with...trust me on that one.
Have a wonderful holiday with family and friends, much love,
RONI

Erica said...

thank you Aline and Roni!! xxoo

Amy said...

Hey Erica, I am a friend of Dawn's and have followed your blog for the past six or so months. While I do not have a child with Rett syndrome, I have a very good friend who does (Dawn) and I try to keep up with Rett news as much as possible. I have so enjoyed keeping up with your blog and learning more about Avery and Rett syndrom through your writings. I love the Christmas' past entries. Great idea! As a mommy you inspire me to be even better so thank you! Amy

Erica said...

Amy! Thank you so much for your comments! I love to hear what people think! i appreciate it!