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.

Saturday, February 28, 2009

Braska: Happy Heart Day to Me!

Did you know that two years ago today I was having my heart fixed!?!? Isn't that amazing that it has been so long!? And look at me now!!

Mommy wrote some more about my Happy Heart Day over here, so be sure to go read that. And if you wanna go back and read about my surgery and my good behavior with the nurses, you can click here.

Oh! And if you haven't seen all my pictures from lately, make sure to check out my last couple stories here and here. There are a bunch of good pictures there since so many of you ask for pictures all the time!!!

Really? Two years??

It doesn't seem possible. Two years ago today, we were sitting in the OR waiting room at Cardinal Glennon Children's Hospital. Braska was one week past 3 months old. At this time in the afternoon, she had been in surgery for a little over 6 hours, and she still had almost 3 more to go.

A bit of nostalgia...
This was my last pic of her with an uninterrupted chest. I had such a hard time with the idea of her being forever marked. The thought of the details of the day were too much for me, so I completely put them out of my mind.... or so I thought. But I still took this picture for that purpose...


And before we took that long walk down the hall to the doors of the OR. I got in a bit more cuddling. That was the only time I cried that day, as we gave her to the nurse and her daddy and I walked away to go wait with the family. I'm getting teary typing this! How weird is that?!


But look at us now... This is how I spent this morning, two years later. The girls and I sat in the recliner, where we've all three passed alot of time lately due to both of them needing my attention almost constantly the last couple days. Braska loves to just study her sister, touches her sometimes, and give her lots of kisses.


I prefer this morning to that one two years ago. But if it hadn't been for that day, we wouldn't have this day. I look at it as a great reminder of what God has done in our lives. If you look at the individual events, it seems barbaric--how would we allow some stranger to literally open our baby's chest? That's horrendous! But, obviously, when the big picture is seen, it was a very difficult decision, but one that simply had to be made for Braska's life to continue and for her best interest to be upheld.

As I look back at this period of our lives, we were in a very painful place as a little family of three for many reasons. This week not only brought a surgery for our little girl, but it brought a very deep and painful wound to our marriage. I struggled for a long time, and actually still struggle now honestly, to understand why the Lord would allow such a horrible gash to be allowed. How could that possibly be something he could use? But the beauty of His plan is in the whole picture, not the individual elements. That wound was used to bring to light the deeper infection and condition that was hidden below. Though there would be more "surgery" needed before healing could begin, it was part of the process that, with alot of work since, has brought us to where we are today. And that is something for which I'm very thankful.

Thank you, Lord, for seeing us through. Through the waiting. Through the surgery and postop stress and learning. Through the dark times that followed. Thank you for bringing us SO far, for bringing us to this place, for teaching us to trust in ALL things. Let us never ever EVER forget this time and it's lessons. Remind me of these lessons when I focus only on the painful elements of life as we move through the days and years to come. You're in control, and you always want the best for us. For that I am humbled and so grateful. Amen.

If you weren't around back then, please take a minute to check out the post from last year here and look through the links to the posts during our hospital stay. I never want to forget how far we've come and how blessed we've been.

Happy Heart Day to my Braska Bear!

Monday, February 23, 2009

Braska: Back from Grammy's

I had a good time at Grammy's. I played with Auntie Joy alot, and I practiced my eating with Grammy. I've been eating some little bits every day that Grammy was at our house and when I was at her house. That's right... eating! I'm still only taking a little bit, but it's pretty yummy and Grammy and Mommy say I'm doing a good job!

Here's some pictures from Grammy's house when she made me some carrots. They were good!



(Mommy note: She is really doing well, and we're cautiously optimistic. If you've followed Miss Stubborn for a while, you know that she tends to do things that are encouraging, when it comes to food, and then she just quits it all. So we usually are a bit skeptical that new things like this will last, but she's been consistent now for close to three weeks. AND she's doing it for me, which is a good sign. She generally eats well in these phases for my mom and occasionally a therapist, but never for me. At this point, she's eating two to three times a day, about 3 tablespoons of food each time, either applesauce, yogurt, or pudding. I'm glad, and I'm doing my best in this new period of busyness and sleeplessness to keep up with very regular feedings. So far so good... we'll see how it goes as we move forward. We're celebrating this progress, though. I'm thrilled that she's taken these steps!)

On Sunday, after church, Grammy and Papa took me to see Mommy and Daddy and Kinlee. I was very glad to see Daddy especially! We had some lunch and then we came home.


Well, we didn't go home right away. First, we went to meet Baby Xander, my new cousin. He's just one week younger than Kinlee. He's pretty cute!


Then we went home because we were having friends come over. Oh, I forgot to tell you about my cute hair. Grammy put little braids in my hair, and Mommy and Daddy thought they were really great when they saw me at the restaurant! They're kind of messy here, but we'll do them again soon and take better pictures.


Our friends Amber and Katelyn came over with their parents to meet Kinlee and they brought us dinner, too! The girls are so funny. They were dancing and we played alot!


Sunday, February 15, 2009

Braska: Girly words

We are just being home these last few days. Grammy is here with me, and we are having all kinds of fun. Sometimes I sit with Daddy too and say hi to Kinlee.



I've also been working on saying new words and making my old words easier to hear. Checkout my newest one... it's what we put on my face everyday to keep it soft and pretty.
video

Monday, February 9, 2009

She's here!

Kinlee arrived this afternoon. She's a peach of a little girl, long and skinny. Things went well, and there are details and pics on her blog at

http://kinleecarene.blogspot.com.

Thanks for all your prayers and encouragement! We're doing very well so far!