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

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!

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