Sunday, May 15, 2011

The Story Behind the Song

This post explains the story behind Mark Schultz's "What it Means to Be Loved."  I think it's a beautiful explanation of the story that inspired him to write it, and makes another parallel to our story.

As you know, we didn't know about Abby's CCMS before birth.  All we knew was that she had Pierre Robin's Sequence, which is characterized by a small jaw. 

A small jaw.

Do you know that there have been quite a few instances of termination for Pierre Robin's Sequence?  All because their child has a small jaw.  Most of the children with PRS don't even need tracheostomies and some don't need anymore surgery than just a cleft palate repair.  I can't imagine terminating over something like that.  I can't imagine terminating.

We went to our first appointment where we got the official results of the level 2 sonogram and plainly stated that we weren't interested in discussing termination and that we would love our daughter no matter what.  Thankfully, the wonderful Dr. H respected that and never even brought it up.

I'm not sure if he would have had more of an "obligation" if we'd known her CCMS diagnosis before her birth.  I don't think so, because something tells me that Dr. H has a lot of faith too.  He was just that kind of man.

Based on conversations we'd had with the neonatologists, I am certain that some of them would have encouraged us to terminate if they'd met with us prenatally.  Our geneticist even suggested that if we want to have another baby, they could run tests to see if the baby has CCMS and then we could just terminate if it shows up. 

Sounds so simple, doesn't it?

If you don't like what you see on the sonogram, just get rid of it.

I clearly stated that termination wasn't an option for us, and she just looked at me in surprise.

And no, no, no, we don't have any plans!!  It was just something she mentioned in passing that got me all worked up.

Lots of people have lots of opinions on medical terminations.  Some of you may even be thinking that there's no way you could handle a challenge like Abby.  Let me just tell you this:  you can't truly have an opinion on medical termination until you're there.  You just don't know how you'll feel about it until you're facing it with your own child.

Holding my little girl, feeling her nuzzle my neck, seeing that sweet smile spread across her face when I come in the room...I just can't imagine if I'd made the choice to not have her in my life.

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