Sunday, April 13, 2008

Her own course

Our dilly-dallying, meticulous geneticist finally completed the paperwork outlining Hope's diagnosis with Cornelia de Lange Syndrome. It arrived Saturday in an envelope the size of some yellow pages.

Bureaucratically, we need it to buy supplemental insurance for kids with disabilities and enroll in the Children's Hospital of Philadelphia study to pinpoint the gene that went awry to give Hope the syndrome.

Emotionally, it was sobering but unsurprising. The packet listed everything from the arc of her eyebrows to malformed bones and contained such page-turning phrases as "the pinnae are well-formed and normally placed, without thickened helices."

One phrase stuck out: Her development to date is normal.

Granted, the report was based on data from three months ago. But it was still nice to see. We've kept score of milestones the way some folks track thoroughbreds or box scores. We know the day is looming when she'll fall far behind the curve. But so far, to our delight, she's surprising us. She's mostly on track and got her first report card the other day from occupational and physical therapists: Gold stars all around.

Hope's doing nifty things. She's grabbing her binkies, moving them from one hand to another, gazing at her outstretched hand and willing her thumb to her mouth (usually she misses.) We regularly consult the development chart on the refrigerator: Grabs stuff. Reaches out. Likes to play. Controls neck. Check, check, check, check. Son of a gun.

So we were feeling fairly pleased when we left for a play date with a pal born about two months before Hope. We left with our eyes wide open. We're working on a different standard altogether.

Hope's pal, Lanagan Jack, is in the 25th percentile weight-wise. He is 9 pounds heavier than Hope. On paper, they could seem similar socially: Both grab things, are happy on their stomachs, smile at their mommas and poppas and can kinda, sorta prop themselves up with their arms.

But when Lanagan grabs you, you know it. He's a bruiser. When Hope does, it's delicate and slow. He amused himself with toys and whimpered once. Hope cried for two hours.

They're both great, beautiful, wide-eyed joys. But they aren't really peers. It's kind of tough, but it's OK.

We've known since Hopesy's birth that she's moving at her own pace. It's a lesson that's reinforced every time we think we have figured her out and she zings us for the presumption. We suffer no delusions. Things that come naturally for most will always be a challenge for her.

We could wallow, but that's boring and exhausting. So we party twice as hard at Hope's accomplishments. This week, she began kicking up a storm. She's swaying from side to side, reaching for toys across her body and plotting a slow, deliberate but definite course to rolling over.


beth said...

Yay for Hope! She looks so beautiful in this picture. Comparisons are tough. Even in the best of situations, there's always someone bigger, stronger, more talented, smarter, etc. to compare yourself to. Going your own course is indeed the way to go.

Anonymous said...

And it could have been he who cried for two hours. My mom always said (stop me if you've heard this one!) that the only thing you can depend on with a baby is that you can't depend on them.

Hope is no doubt on an even more unpredictable curve than most little ones, but I second (or third) the notion: hurrah for progress!!

Grandma K.

Karen said...

Hope will indeed chart her own course, but it sounds like she's doing great!
Our Ben is so globally delayed that I have long given up thinking about where he should be developmentally. We let him plot his own course, and try to help him as well as we can to find his way.
All the best, and watch out for when she figures out the rolling over thing and finally becomes mobile!

Anonymous said...

I'm so thrilled for you on all the news and am dying for the day that we can meet little Hope. Elana has been waiting patiently for her buddy. Definately, please swing when you are in the area. We would love to see you.


Sonia said...

Hope is doing amazing!! :) I find that, since Natalia is my only child, I don't have a comparison point which actually is quite liberating. Those first few months I drove myself nuts researching development and charting my peanut, until one day it just didn’t matter. She has danced to the beat of her own drum and that is fine, she never seizes to amaze us. When we have play dates everyone just sees her like the “baby” and Natalia loves the extra attention.