Oh yeah, and the baby will need foot braces too. This more than anything made her condition real. On the PT's first day, he asked us to take off Amelia's socks. He said breezily that most low-tone kids have flat feet, and pronate (which means their feet turn in, and all their weight goes on the inner foot bones, which aren't made for carrying so much weight). Sure enough, A's cute little feet were pronating when she stood. Good thing the braces aren't those full-length heavy wood contraptions, that even in my 70's childhood were antique, though I admit, that's what first came to mind.

Braces. Boo. At least it's 2007 and they're small, flexible, and come in fifteen colorful and cute designs.

That's a phrase I came across on a chat board over the weekend, and I'm finding it very helpful. As I search around to make sense of the baby's disability, I find myself in the cordoned-off world of mothers of special needs children. (Where the fathers are, clearly, is a question, since they are largely absent online.) I don't yet even know what to call this condition my baby finds herself in. It's not as comprehensible as it would be had she a named disease. That's probably, at this point, a good thing, and perhaps I'd be in this murk anyway, treading from a world in which we laugh at all those developmental milestones and the cultural assumptions behind them, because our children pass them by with nary a thought, into this new place where they mean something medical and real, where it's not our assumptions about proper achievement, but the tension of muscles and the neurologic impulses of the brain that rule the day.

I don't even know what this condition is; the medical literature tells me hypotonia is a symptom of something else, but that something else hasn't yet and might never be discovered. Does she have a condition? A disease? I can't quite think of her as disabled, really. Until I realize that we are receiving all these Sweden-like free services because the state has marked her as disabled, and as such has taken it as it's interest to make sure she is pulled back to the normal mainstream.

The phrase I found was Anticipatory Anxiety. It was used to describe the anxiety we feel, we create when there's a loved one in our life with a condition whose future we don't know. The anxious musing that takes over when we're caught up in wanting to know the unknowable or in imagining different possibilities--usually the worst ones--that's anticipatory anxiety, when, as I'm prone to do, I begin to rue the day when we'll have to sell our home and move to the suburbs for a school district with good special education. The reminder was to keep it at bay, to live more in the moment when we can. As in: I have no idea what the baby's future will be, what special attention she'll need; why am I already imagining packing to leave my life as I know it?

This is my lesson: to grab the goodness of each day, the sweet moments, the love, the most excellent scene on Sunday afternoon of the neighborhood kids constructing a zipline from the treehouse deck to a fence a few feet and a lawn away, and working really hard to make it work (image for the day: 20 wire hangers wrapped in duct tape to make a contraption for their hands as they swing). The crazy thing: these health-scare conditions that are longterm are what turns us around to focus, instead, on the pleasures of the everyday.

Therapy Week Two. We start by reminding everyone that I am a quiet sort of soul, the kind who prefers to work at home, and who already has two different babysitters in her life, lovely babysitters, absolutely, but daily reminders that I have somehow veered off my life's path of becoming one of those elderly North Carolina gentlemen who sit in solitude, through the day's length, waving kindly and slowly to all passersby from the social safety of the green rocking chairs on their front porch.

Add to this path-veering two new people, named here as the OT and the PT (and who, to protect their privacy will never be named or described). OT comes on Tuesday afternoon, PT arrives with the breath of the morning wind on Fridays, early (though we had an additional session this morning, just a day later).

It's been the oddest of weeks, filled with attempts to google "hypotonia" or "infant low muscle tone," which on one hand finds me, in ten clicks, an excellent iVillage discussion board, several neurology Q and A's from a clinic in Cleveland, and a very sweet, bare bones site written by a child, now grown, who dealt with hypotonia his entire life. I imagine all the follow-up testing we'll have to do, after reading accounts by mothers who have passed their young children through gauntlets of neurologists and geneticists, only to learn that a) no apparent cause is discernible, or b) a cause has been found, but it's untreatable and incurable, anyway. Plan: continue with therapy interventions. I worry, because we too, are headed down this path, perhaps, ready to immerse in a world we are unprepared for and have not yet found a wise mentor to help us navigate.

At the other, I read descriptions of babies who are so floppy they can't sit, and can't nurse, and I think that Amelia is quite moderate. I sheepishly asked this question of the PT this morning, and he agreed, saying that most likely Amelia will be fine. I start counting her small achievements, like how at this morning's breakfast, no Cheerios feel on the floor. Because of the way she grips and grabs all the  Cheerios in her hand at once, half tumble to the ground (usually to be squashed into the floor by everyone else). Today: nothing. Perhaps already she's getting stronger. At this end I am in the moment.