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.
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.