Friday, December 7, 2012

Doing the Most Good

Yesterday we decided to take advantage of an evening with no after school activities and went into NYC to see the "Big Tree" in Rockefeller Center.  The kids were quite excited about this little adventure and were even willing to skip doing their homework. =)



 We had a beautiful night! Not too cold, but cold enough to feel Christmas-y.
beautiful sunset as we drove down the West Side Highway




Loving the Lego Store!

We had a celebrity sighting on our way in!
Geraldo Rivera -- he rolled down his window to say 'Hi' to us!

And we met up with some really cool people (Aunt Christine, Uncle Joe, Eliza and Hudson)!




The tree was really big, and really pretty. The ice-skaters were fun to watch.  And the Lego Store was really cool.  But, I think we all had the most fun watching Anna help ring the bell for the Salvation Army kettle that was located at Rockefeller Center.




Yep! That's Anna -- Doing the Most Good!

Sunday, December 2, 2012

You'd Better Watch Out!

Yesterday was our annual DSGNWNJ holiday party.  This has become a fun tradition for our family and something that we really look forward to each year.

As usual, we got all fancied up and attempted a picture or two.



And then we went and got our dancing shoes on!




The highlight, of course, was a visit from Santa and Mrs. Claus!



To say that Anna was excited about seeing the Big Man is a gross understatement!  You would have thought she was a 13-yr. old and we had just told her that Justin Bieber walked in the room.  She jumped and screamed, sprinted across the dance floor, pushed kids out of the way, just to get closer to Santa and get a hug from Mrs. Claus.  When we finally got her to sit down to wait her turn, she kept sneaking closer and closer and infringing on other kids' time. I am pretty sure there are at least 6 or 7 kids that had Anna front and center in their picture with Santa.
Blurry - but you can see the excitement on her face

Move it, kid! I need to talk to Santa

Hey - I need to talk to Santa. Will you get him for me?

Hey Santa - here I am!

Why the infatuation with Santa?  Well, I am pretty sure she was feeding him a big line of bull trying to explain her poor behavior this year.  Don't buy it, Santa!!  Don't be fooled by her cuteness like the rest of us!!!




Friday, November 30, 2012

Bahhhh-bie!

Have I mentioned that Anna loves Barbie?  Or, as she says it..."Bahhhhh-bie".

Her favorite Barbie movie is Barbie: A Perfect Christmas.

We have seen this movie pretty much everyday since mid-August.  And, we listen to the songs all day long.  Needless to say, she has the movie, the songs, and the actions to the movie and songs down cold.

While the movie is on, or the songs are playing, Anna likes to sing along and act out what is going on.  There is one scene where Barbie goes to the window and is singing and wishing on a star, and then she does a ballet dance.  During that scene, Anna goes over to our window, sings and then turns around and starts dancing.

And now, Anna has started to add props to her movie watching...


Rolling suitcase so she can go to the airport


headphones like Skipper


stretching with Chelsea


turning on the light with Stacie

And, of course, a microphone for her concert later in the show
Oh, Anna (and Barbie) -- we love you!! =)

Tuesday, November 13, 2012

We Couldn't Keep Up...

...But it didn't matter!

I know this post is a little late, but so was Halloween in the Garden State - so go figure! =)


 This was the first year that Anna was interested in trick-or-treating.  It was also the first year that she was able to say "trick-or-treat", or at least some close approximation of it.

After a few tears getting into her costume, Super Girl was ready to fly!  We started off with the big kids, but just couldn't keep up.  Charlie and Paige stayed with us for a few houses, but then the excitement of trick-or-treating got the best of them, and away they went.  (Fortunately, in anticipation that we wouldn't make it far, I had made arrangements for the Bigs to make the rounds with the neighbors.)


So that left Anna going door to door by herself.  But,  you know what?  She didn't care one bit.  She went up to each house (that I let her go to), rang the doorbell, shouted "trick-or-treat" with a smile, picked out her candy, and signed and said "thank-you", and then came running back to give me a hug.

It took us an hour and half to go the end of our street and back, (The Bigs were able to circle the entire neighborhood in that time.) but she had so much fun and kept asking for more despite being freezing cold.


Finally, I was able to get her home where she took over the duty of handing out candy.  One by one she would place the candy in the bags.  So diligent, so precise, and so awesome!!


This was by far my favorite Halloween ever, and I cannot wait for Christmas this year!

Monday, October 29, 2012

It Matters

Acceptance Matters.  Inclusion Matters.  Patience Matters.  Understanding Matters.  Education and Awareness Matter.

Down Syndrome Awareness Month is about over and...so what?  What does it matter?  Why does it matter that we continue to try to educate the general public about Down syndrome and what it is really like to raise a child with Down syndrome?

Here's why...

According to recent studies, 90% of women with a pre-natal diagnosis of Down syndrome choose to terminate the pregnancy.   90% !!!!  (And that is lowest estimate I found.  Many other estimates are more in the 93-95% range.)   Ninety percent do not want to be "burdened" by a child with special needs.  Ninety percent see Down syndrome as hopeless. Ninety percent of women who receive a pre-natal diagnosis of Down syndrome do not feel that a life like Anna's is worth living.

This isn't a pro-life vs. pro-choice issue.  This isn't a Democrat vs. Republican issue.  This isn't even a religious issue.

This is an issue that stems from a lack of education and out-dated stereotypes.  It stems from the doom and gloom outlook that is given by doctors when they are delivering the diagnosis.  It stems from a lack of awareness in the general public of what Down syndrome really is, and why it is not to be feared.

When the doctor first came to talk to us about Anna and his suspicions of Down syndrome, the picture he painted was not pretty.  There was a lot of talk about mental retardation, developmental delays, common health issues, etc.  If he ever talked about how much joy Anna would bring to our family, or all of things that she would be able to do, I never heard it; I was already swimming in my sea of fear and misery.

I really knew nothing about Ds before Anna.  I had a few out-dated stereotypes in my head, but that was about it.  There was a whole other world out there that I was completely unaware of, let alone wanted to be a part of it.

But, the grief period ends and you can't help but feel the love.  Health issues can be overcome with the wonders of modern medicine.  With early intervention and a supportive school system, developmental delays can be minimized, and your child can grow to their fullest potential. Fears subside as you start to realize your baby is, well, a baby.  For the most part,  life will be normal (whatever normal is).

Children with Ds will have friends and be invited to birthday parties.



They will play and swim and climb.



They will love and change your heart and view of the world.



Nobody wishes for Down syndrome, but some of us get lucky.  Unfortunately, most people will never know how lucky they were.   Ninety percent of women with a pre-natal diagnosis choose to terminate their pregnancy, and 100% of those 90% miss out on what would have most likely been the greatest blessing they would ever receive.

So, it matters that we spread awareness about Down syndrome because the world is missing out on a lot of beautiful people who were never even given a chance to share their magic.