World Down Syndrome Day 2011

3-21-2011 
For 3 copies of the 21st chromosome, unique to Down syndrome. In my opinion, creating some of the cutest of the cute out there. Don’t miss the video below.

World Down Syndrome Day.

Take the chance to tell someone a wonderful thing about someone you know with DS. Or share with someone how your views have changed now that you know and love someone with DS.  If Braska is the only person with DS that you know, be sure to brag on her a bit today. I don’t mind at all!  Feel free to link to the recent post about how far she has come since her heart surgery 4 years ago.

Today, make a decision to be intentional about making others aware that a diagnosis of DS does not have to be met with utter despair, it doesn’t have to be a death sentence, and it is not a reason to take an unborn child’s life.

Just tell someone. 

The IDSC for Life has put together a really nice video of some of our little beauties… I have my favorite in there, and a few who follow close behind her.  Maybe posting a link to this in your Facebook status or on your blog or Twitter would be a great awareness opportunity.

Stringing letters [Down syndrome, fine motor skills, OT]

My teachers at school are just the best. I like all of them so much. And it’s so much fun to see what new things we’re going to do everyday.

Miss J had a fun new thing for me to try a few weeks ago.  They are LETTERS! My favorite thing in the world!  Miss J helps me learn how to use my hands better and make them stronger, which is really hard for me.  But these fun new letters are so great I don’t even mind doing them for practice.

Then the coolest thing happened…. I got home and there were MORE letter beads, just like my ones at school!  It was like magic! Somebody special loves me a whole lot, I think!


KiKi plays with them too, but they are my special toy to practice with.  The first day we had them at home, Mommy let me play with them some after KiKi went to nap.    Here’s a little movie for you to see…  check out my skills!

Make an on-line slideshow at www.OneTrueMedia.com

Mommy note:   Neat things to note in this clip…
~~Fine motor is a VERY difficult thing for Braska.  She has only been in regular fine motor focused therapy for about a year, because prior to that most of her OT time was focused on feeding.  It is one of the areas that she shows the most delay. But we’re not bothered by that.  She’s doing great! She now has two OTs at school (the best two, in my opinion!), one for feeding and one for fine motor. (They are a GREAT team and overlap a lot in each area.)
~~ Suddenly every letter was her “fav’rit”. As in, “Oh, the letter U, my fav’rit!”
~~Most of the letters you will hear her say “makes the ___ sound.”  This is something we’re working on, mostly because Kinlee is obsessed with what everything starts with and what sound all the letters make.
~~You’ll notice phrases “I better go get it” and “I do it again” and others.

Mommy life: Heart Day--Celebrating 4 years!

Four years ago today, I handed my girl to a team of people. Basically strangers.  Their plan was to cut her perfect skin, crack her sternum, stop her heart, poke, stitch, and patch, and then bring her all back together again. 

And I still let them have her. Amazing.

Though not without lots of prayers in the moments before…

See that tiny girl up there?  3 months and 1 week old. About 11 pounds and 20 inches, at the very most. Her life to this point had been largely sleeping and watching the world go by, punctuated by lots of doctor appointments.  And now we were going to introduce her to “real life” in this way?

(If you haven’t read through the story as it happened, you can go here and find links to all the posts about the experience. There are videos, pictures, and more details about how it all went.)

I often call Braska my little SuperStar.  She amazes me every day.  She has already, in just over 4 years, totally surpassed all the expectations that I had in those first few days of how life would be.  They were grossly unreasonable and borne out of fear and the unknown.  But the beauty of that place of beginning is that every single solitary day brings celebrations, success, and progress, even when we feel like we’re sliding backwards at times.

So here’s to my girl, my little cheerleader, the sweetest light to brighten my day.  That precious heart that was messed with and cut on and brought to a halt four years ago now beats with the truest sense of love and real life. 

She’s still tiny. But she is healthy and her heart has been deemed, “Perfect.”  Over and over again, each time they look at it. Life is still a long road ahead and a lot of it will be uphill.  But if you want to know what her outlook on anything is…just look at her and say, “Hip, hip…” and she will be more than happy to add her daily mantra… “Hooray!!!”

We will be forever grateful to the team who repaired her heart and to our God who held it while they worked.

And how else should a girl celebrate a healthy heart on her 4th Heart Day??  Wrestling with Daddy and Sister at the end of a day full of fun. 

Live on, little one.  You’re showing the rest of us how it should be done.

Mommy life: A peek at the future

Maybe it’s because music is part of my core nature, maybe it’s because I have a daughter with Down syndrome, or maybe it’s because it’s just an inspiring story.  No matter why it caught my attention, I’m glad it did.  (Thanks Ria for posting!)

It’s really short…take a look.  I just LOVE seeing girls about this age who are just living life. Who knows where Braska will be and what she’ll want to do, but it’s fun to think about her in an opportunity like this.

(video embedded below)

I couldn’t quit focusing on her speech and articulation… so good.

Now if only we could commute to that class once a week…