New Blog Design

So, I'm sure you noticed that I applied a new design to our blog. The previous one had been in use since 2007 with very few changes. So...I upgraded.

This design uses a lot of transparency so you get nice, glassy-looking foreground colors. It's purty but may load slow or display all jerky on some computers.

Ultimately, I want the blog to readable first and aesthetically pleasing second. So, if you have trouble reading PLEASE LEAVE A COMMENT so I can continue experimenting with templates to find something that looks fresh but displays well.

Thanks,
J

Nora Can Walk

So hopefully this is okay for now. Nora is napping at the moment and this is the only video I have of her walking on our Flip. She was a little fussy that day, so sorry for the screaming, Poor Nora. Enjoy!

Happy Birthday, Nora!

WARNING: This is last years picture (I found it on my desktop). So, don't get too excited. I agree though, it's hard to not get excited about this picture!(wish Nora could still feed herself. This is one skill she has lost this year :( But on a good note she's learned to walk!!)

Real Post

I'm very frustrated! I'm sure some others are too! We are currently having some issues with our server, and of course, alllllll of our pics and video are on there. So, I was going to post a "Happy Birthday, Nora!" post, but I have no pictures or video to show you.

I know, it's all so frustrating, and with Nora walking now we are extra excited to share the news and show everyone. So, hang on to your britches and we'll hopefully have our server fixed shortly. I will try to post a video of Nora walking since I might have one on our camera that I didn't put on the server yet.

Sooo......

Nora's Army: Rett Runners!

This weekend was insane! We went to a conference about Rett Syndrome in Colorado Springs. It started on Friday and went all the way through Sunday afternoon. It was amazing, encouraging, informational and totally worth it for the experience and knowledge gained. We'll probably post more about that later.

On Monday we ran the Bolder Boulder with a bunch of Friends. We decided some time ago that it would be fun to do a running event together and the Bolder Boulder was a great first run. It is in Boulder, CO and is a 10k (6.2mi). The course winds around downtown Boulder and ends at the CU Stadium (Folsom Field).

We made Nora's Army Rett Syndrome Tee Shirts for our group that was running together and handed out cards about Nora/Rett Syndrome to bystanders. The race was exhausting (partially because the conference was mentally draining and we were low on sleep) but we had an amazing time. I think the kids had fun watching from the sidelines with their Grammas too (whom I didn't get in the video, sorry!).

I don't have time to go into much detail about the weekend or race but the video above is a compilation of shots of the race from my phone. I might make a better one if I get pics and videos from others...I didn't have a ton to work with.

Thanks to everyone that helped out both at the conference and the race. It was a really fun weekend that managed to be exhausting and refreshing all at once.

RegRETT Syndrome

To the chagrin of tomorrow's self, I owe it to Nora to open the doors for a minute tonight.

Tonight we went to the painter's house, had dinner, and stayed late playing games. It was pushing 11pm by the time we got home. Coen was fast asleep and there was much to carry in. The snow was falling steadily (in May!) and the ground was a muddy mess.

Kristy headed to Coen's room with our sleeping adventurer. I carried our stuff in and went back to the cold, semi-dark van for my little Rett girl. As I slid the door back, the lights came on and lit up little snow flakes that drifted down to melt on her cheeks. She smiled the biggest, crinkly-eyed, toothy smile at the snow and her daddy and snuggled up to my shoulder in the short, cold trip to the house. There was no accusation in that smile.

I thought about her hopping after the other kids all evening, nobody playing with her. Her younger brother keeping up with Haley and sharing toys and laughing together. Nora, content just to be around the others. While mommy and daddy had fun with their friends and brother played with his friends Nora explored, alone, a world she can barely interact with. Later, while she enjoyed her bottle of warm Almond milk, warm drops replaced the chilly snowflakes on her cheeks as daddy's regret and guilt overflowed.

I wrote these verses for Nora shortly after we found out she had Rett Syndrome. I don't claim that they are good but they are inspired by a little girl who can walk through walls.

My little tree, in verdant grove it grew.

It seems that nature dealt a loser's hand:

For though the trees around stood tall and true,

mine struggled to survive upon the land

To other trees, new growth was easy play.

For mine each tiny branch was hardly won

It pained to watch the struggle every day,

but joy, we shared, at trials overcome.

Surrounded by the tall, the strong and free,

my tree, both sparse in leaf and frail in root,

may not produce in size or quantity.

Yet still, it grows the sweetest kind of fruit.