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.