Defect

As September wears on (a whole eight days gone already) and we edge into October, I am anticipating my trip to Atlanta where I'll meet with some of the most amazing women I've ever met.

We'll gather to talk about the March of Dimes and how this wonderful organization has helped each of us with our premature children, or our children who suffer from a birth defect or, worse yet, those who have lost children either in infancy or later in life from complications that arise from prematurity or birth defects.

My beautiful friend Julie has been charged with the responsibility of creating a tribute to our children, a video that will be shown at a ceremony of remembrance.

She's putting the pictures of the kids into categories and we were talking about those categories the other day.

The category that Olivia fits into is that of Birth Defects.

Julie and I agree that we don't like that title. I said something like, "When I look at Olivia, I don't see a defective child."

I don't see her syndrome as a defect. Yes, it's given her challenges, but...defect?

Not so much. Not this little girl who is STANDING ON HER HEAD these days. Not this child who races after her sister and cousin, keeping up as they all sprint from room to room. Not the kid who gave her Papa Tom the thumbs up after a hearcut last week because she knew it would make him happy.

No.

Olivia is not defective.

But...

She does have a chromosomal disorder.

That's what I said to my mom this morning. If I were asked how I'd describe Olivia's syndrome, I'd call it a disorder. She's missing part of one of her chromosomes.

We got REALLY lucky with her.

The parts that she's missing have affected her muscle tone but not her sense of humor. Not her sense of style. Not her humanity or her ability to think her way out of a problem.

She's amazing, missing genetic material and all. And while I'll still send Julie those pictures of Olivia and I'll attend our conference and cry at the Remembrance Ceremony and laugh a little afterward as we sooth our emotions with a Sabrina Slammer or three (or is that only served in D.C.?) I'll always have a small problem with the word 'defect.'

In time, we'll all work to change the wording used to describe our children. We'll continue to meet up once a year face to face and daily online and keep working to change the way society as a whole sees and treats our children. One word at a time.