Beyond Price

Standard

Somewhere I read that a blogger should take a strong, perhaps controversial stand, and defend it. Well, here’s my controversial statement du jour:

 

America, you do not value my child. You do not value children like her.

 

Recently, Julianna, Alex and I were interviewed for the Columbia Missourian. Here’s the link:

 

http://www.columbiamissourian.com/stories/2008/06/01/Mother-embraces-challenges-joys-daughter/

 

It’s a great article, and my thanks go out to Regan for the work she did, and to Alex for the great pictures. (Julianna, who is crazy about men, went from crabby girl to little smiley angel when he walked in the door.) But this one important point was left out, so today I’m going to blog it.

 

It hasn’t been that long since ACOG made headlines by recommending that all women get the test for Down syndrome in their first trimester. All women. Not those with a higher risk, but all women. If you put them on the spot, these doctors would probably say that they want women to be informed, so parents don’t get the shock that Christian and I got when our child was born. So that parents can be ready. So they can make “informed decisions.”

 

But “informed decisions” already lead to 80% of kids with DS being aborted.

 

Eighty percent. And that’s without universal testing!

 

When Julianna was born, we spent the entire hospital stay arguing—sometimes heatedly—with various doctors and nurses. This particular hospital is a wonderful facility, with wonderful staff, but they were woefully unprepared for a child with Downs. How can a hospital with such a fabulous staff and a Catholic mission be so ignorant of what to do with a newborn child with Down Syndrome?

 

Probably because so few of these kids are allowed to be born. We’re too wrapped up in being “perfect.”

 

In the first days of Julianna’s life, we learned that there isn’t a lot of research done on improving quality of life for people with DS, because it’s not a disease and it can’t be cured. So all medical efforts are spent trying to identify the kids before they’re born—so they never get born at all.

 

Obviously, the world would be a better place without my daughter.

 

Yes, let’s play that out for a moment.

 

Without my daughter, 850 school kids at CCS would have had no one to ooh and aah over, to cuddle, snuggle and adore for the last 16 months. A dozen different adults who held her while I led music for Mass would not have found themselves relaxed, centered and ready to face their day after nuzzling her while she napped on their shoulders.

 

Without my daughter, the parishioners of Our Lady of Lourdes in Columbia would not be distracted at Mass by her goofy giggle, her heart-stopping smile—and their lives would be much poorer for it.

 

Without my daughter, Alex would wake up crabby every morning.

 

Without my daughter, I would never have learned that you can see into God’s heart, pure and unadulterated, simply by gazing into a child’s eyes.

 

Without my daughter, I would still be afraid to touch or talk to people with disabilities, even knowing full well that they were created by God, with immortal souls as beautiful as that of Angelina Jolie.

 

Without my daughter, the world would be without this smile.

 

 

 Photo by Alex Lewis

 

Julianna is a spitfire. She is stubborn, refuses to nap, stares at her food and then looks at you disdainfully: “You want me to eat what?” She curls into a ball when I say, “Is that a belly?” She lights up when we round the corner and she sees her brother lying half-asleep on his bed in the morning. She dives at him and happily licks him awake, wrestles with him and laughs as if he is the funniest thing in the world. Any sort of music makes her stop whatever she’s doing, sit still and listen intently. She loves paper, beads, puzzle pieces and whatever Alex is playing with, and she is ready to grab life by the horns and wrestle it, wailing, to the ground.

 

If right now you’re thinking, “Kate, you haven’t said one single thing that is unique to Julianna Basi. Every one of those things could be said about any child in the world”—

 

—Good! Because that’s the point! Julianna is an absolutely normal child in absolutely every way, except that she is slower. And she reminds us that slower isn’t bad.

 

Julianna’s value to the world? Nonexistent.

 

Julianna’s real value?

 

Beyond price.

 

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