When we got the diagnosis, life froze. We went through the motions. My daughter went to her extra dance rehearsal as planned. The portrait of the poet on the NYTimes Book Review is etched in my brain, although her name is not and the Book Review was left behind in the theater and lost. I went to my local school to help with a project, because I'd already made the commitment. Talking about how best to phrase something in a report, reciting the rules for semicolon use let me focus for a few hours, let me pretend life was the same.
But it was as hollow as one of T.S. Eliot's men. Not only did I cry myself to sleep, I woke up in the middle of the night with tears streaming from my eyes. This was not the first time something bad had happened to me, not even something bad to my health. I'd stressed myself into a chronic condition that led to a decision to leave graduate school ABD, I'd had a life-threatening blood clot in one leg. The difference between those events and this was that they had primarily happened to me. This had happened to my daughter because of me, without my being aware of it.
The pediatric cardiologist who made the recommendation had mentioned a support group. My cardiologist did the same after my diagnosis. He also offered to put me in touch with someone "in my situation." Turned out it was the parent of a son. Not really my situation at all. Because when pregnancy may result in complications for the mother as well as a genetic condition for the child, the issues are different for guys than for girls. My daughter and I talked it over and decided we didn't want to go to any support group. We didn't want this condition to define us.
Next week: What we did do.
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