Monday, July 25, 2011

Advocating for my kiddo

When you become a mom (or parent for that matter), your kids become your number one priority and fighting for their health and well being tops the charts....and being respected.

We have been fortunate over the last three years to be surrounded by love and support, by friends and family, but also by neighbors and strangers.... and my chances to defend and lift up my daughter because of her Down syndrome have been rare, if at all.  So I've done very little advocating.....

However, I feel like it is important on a NATIONAL level to advocate for people with Down syndrome, because some day, my daughter will benefit from the stance that we take today to make HER world a better place.  It is something I hope to become more involved in this year....starting TODAY.

On July 15th, GQ magazine published a list of Worst Dressed American Cities, written by John B. Thompson.  Boston ranked first and the author described them this way:  "Due to so much local in-breeding, Boston suffers from a kind of Style Down Syndrome, where a little extra ends up ruining everything".  GQ has since removed that phrase from their piece.

On July 18th, Brian Skotko, a physician at Children's Hospital Boston's Down Syndrome Program, wrote an article entitled "Mock My Pants, Not My Sister", in response to the GQ article.
He says in the article, "Go ahead, GQ, and mock my blue whale-emblemed Nantucket-red pants. Laugh if you want at the loud argyles that I prefer to wear with my black suit. I don’t even care if you dismiss the sexy pink polka-dotted tie that I like to wear with my blue-checkered shirt in clinic. But, whatever you do, do not mess with my sister."

We're with you Brian!  Nothing is ruined by having something a little has only been better because of that extra chromosome in our house.  We have extra love and extra laughter and extra patience and extra friends and extra understanding and so much more.

Patti, Lily's mom and one of our blogging friends, took on the challenge as well with a video Montage.   You can read her post and watch the video montage at the bottom, HERE.  Aubrey and her extra something are at minute 1:56.

So to John B. Thompson and all the others at GQ who didn't have the sense to edit the article before it went into print for everyone to see, we have just one thing to say:
"Go ahead and make fun of my GIANT, red, size 17, crocs.  But don't you dare make fun of my daughter." ~ Woody Smith

Friday, July 8, 2011

Friday Night

All of my littles are tucked in bed....the dishes and laundry are done....and my "to do list" is quite a bit shorter after this I"m finding time to share our Friday with you.

 My girl painted today!  It was a first for her.  If you know me well, you know I don't like mess.  My kids don't have finger paints...too messy!  You know that kind of thing...I just hate the mess.  But I'm learning to let go a little and my girl has proven to be very neat.
She took such pride in remembering to dip it in the water and then into the paint.  She created a masterpiece. It was a good day....a good reminder that she really is so smart and that given opportunity to do things and shine....she will.  (and just look at that correct hold she has going on too!)

Summer Friday Nights means a trip to the pool.  When it hits 105...we are always there.
 This year...she's walking and so the world is her oyster and she is becoming so independent.  She is curious, and cautious.  She is brave and shy.  She is blossoming into a really beautiful young lady.
Our little girl will be three in exactly two months...and we have to remind ourselves of it often.  She is still so small in size, but she really is a big girl and capable of so many things.

 We are trying to figure out the correct wording for her IEP (individualized education plan) in school next year...How to politely say stubborn and strong willed!

 She is a strong, silent type...and quite the little lady.
She's my baby and I'm trying to soak her in these days.
 Because my days won't be so full of her anymore....she will be at school...and I will miss her...
And while we want to help her grow and learn and blossom....

We also want to hold on tightly to this little peanut.
 Pretty soon, Aubrey will be hanging with the big girls and keeping up with them.
I'm enjoying where she's at, but also wondering just a bit about her future and wondering what will she be working on next summer....
Will her sisters have her standing on the edge of the pool with them?
How brave is she gonna be at the pool?
Will she still be cautious....or will she jump in with them?
For now...she's happy to hang with me and watch her crazy sisters and keep to the shallow end.  I'm enjoying it!

You'll notice that three people were missing tonight...someone made bad choices names, but they might be 4 years old and stubborn.....and when you make bad choices, you don't get to stay up after dinner to swim.  You stay home and get put to bed....and one parent will have to stay home and as long as someone HAS to stay home...well, the baby might as well too.  And that is why I got to document the night:)  Two free hands and only one little to worry about.

Happy Weekend Everyone!