The Purpose of this Blog

The goal of this blog is to provide education and bring about higher awareness about Down syndrome. It is to share that life with Down syndrome (DS) is not scary, horrible, or to be feared.

My experience comes from raising my daughter, Nebraska Larae (Braska), born November 2006 with Down syndrome.
The posts on this blog are related in some way to life with DS or disability, and they are reposted here from my other family blogs. There are links to those blogs in the margin on the right side of this blog if you would like to visit them directly.

Thank you for coming by.

Monday, February 28, 2011

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.

1 comment:

Ashley Jean said...

I LOVED this post! I'm a "new follower" and we'll be celebrating my son Ethan's 4 yr HEART anniversary this November! :)