So I thought I was just this really tall, gangly (and geeky) girl and I was all ready to live my life alone. Except that's not how it worked out. I got married after college (and I am still married to the same guy, after almost 30 years). But I wanted to go to grad school and didn't see how I could combine that with being a mother. So it wasn't until I worked myself into a stress-related chronic condition and left graduate school before earning a Ph.D. that having a baby seemed like something I was ready for.
Because of that chronic condition, (which isn't related to Marfan), we only had one, a daughter who is now 19. She was a sweet baby and a wonderful little girl, always slightly above average in height, but not extra-tall or with extra-long arms or any of the standard Marfan markers. It wasn't until she was in 7th grade and her pediatrician heard a heart murmur that he said he "couldn't rule in or rule out." He sent us to a pediatric cardiologist who looked at Lydia and then looked at me and I think she knew even before she had the echo results.
That's right. I found out my daughter had Marfan's before I knew my diagnosis. But I knew I had passed on something I didn't even know I had to one of the people I love most in all the world.
As we sat in the car in the parking lot two images alternated in what thought processes I had left: A cement wall just fell down in front of us and we slammed into it; and Gandalf saying to the Balrog "You. Shall. Not. Pass."
And I didn't, not for a long time.
More next Monday. Because I'll be posting to this blog weekly, on Marfan Monday.
Monday, December 8, 2008
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