Monday, September 27, 2010

Quality of Life Week -- Day 1

Lately, I've been giving a lot of thought to the phrase "quality of life," and more specifically, how it relates to Trisomy 18. I have Google Alerts set to Trisomy 18, and any time I see a post, I also usually see "incompatible with life" and other alarming phrases and statistics that accompany this condition.

I know that there are doctors out there who immediately suggest termination upon seeing that their patient's baby has Trisomy 18. I understand their reasoning if they are protecting themselves, but what I don't understand is how those doctors can't see beyond the label.

Yes, I am very aware of the statistics. They have stared me down EVERY day since Lily's birth. I KNOW how fortunate we are that Lily has made it this far and that she is doing well considering. I also know that others aren't as fortunate, and my heart breaks for them day in and day out.

But the alarming phrases and statistics make it seem as if our babies can't have quality of life, and to that, I beg to differ. I think about Lily, our two little Annabels and Rebekah and Kaitlyn. Akaiya, Vera, Nolan, Alyssa, Mikayla. . .this list is bound to go on! These little rebels shake their fists at those statistics! And while I'm sure not every day is easy, these little ones smile when they hear What about quality of life?

So I'm creating for my blog a Quality of Life Week. I usually don't post a whole lot of videos, but this week, I'm posting videos that show Lily throughout the day, enjoying life to the fullest. I begin with a video of how she is first thing in the morning. Like her brother is and was when he was a baby, she is a bundle of joy and so happy. My heart beams to see her this way.


  1. That is the sweetest big brother EVER!

  2. Beautiful!! Thanks for sharing the every day joys. Love is the ultimate quality of life. Why does everyone forget that? You can have brains, beauty, money, ....but if you don't have love, you have nothing.

    Lily has immense quality of life. and Gabriel is a wonderful little guy.