It's a gift

Last Saturday, the Saturday before Christmas, I had to get groceries. The store was crowded with holiday shoppers. Halfway down the "Baking Needs" aisle, a three-year-old looked stricken, on the verge of tears. His mom was talking to him. A store clerk was there. The clerk caught sight of me and said, "I bet she can help," and pointed up. A green balloon bumped the ceiling, its ribbon dangling above the top of the store shelves. I reached, stretched just a bit, and snagged the end of the ribbon. The mom slumped with relief, the boy smiled. She prompted, "What do you say?" and I'm not sure I've ever heard more genuine gratitude in a "Thank you." I said, "You're welcome. Merry Christmas!" As I continued down the aisle I heard him say, "Tie it tight this time."

Sometimes the extra height and extra-long arms that come with Marfan make you just the right person for a particular place or time.

This should have been posted on Monday, December 21, but wasn't, because of other things that went on in my life during these holidays.

Monday.5 - Running in place

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.

Finding Out

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.

And the fingers that prove it.

This is me, a writer. You can read about that part of my life at http://wordsrmylife.livejournal.com/. Marfan-tastic Life is going to be my space to talk about living with Marfan Syndrome, a connective-tissue disorder that is inherited, although it can happen as the result of a spontaneous mutation. I think mine is inherited. My mother's father was quite tall--over six foot--for a man born in 1870-something, and thin, with long fingers. My mother isn't so tall, but she's really thin, her arms are extra-long and her teeth are crowded and her sternum is slightly depressed. I'm tall, like my grandfather, about 5'11", which meant that when I was growing up in a part of the country where girls usually maxed out at 5'4" or 5'5", I stuck out like that one old-growth tree left on the regrowing hillside. I could never find clothes that fit and were affordable, so I sewed my own.

I have long fingers, although there are those with longer. I can span an octave and two keys on the piano, although that definitely doesn't mean I have musical talent. Turns out, I'm better when the keyboard has letters, like in my profile photo. I have really long feet--size 11-- so finding shoes was also tough. One time, I found what I thought were some really cute denim sneakers. When I wore them babysitting, the five-year-old said, "Look, Kathy's got clown shoes." At least she thought they were cool.

I didn't know I had Marfan Syndrome until I was in my 40s, although I think one person suspected. When I had my pre-college physical, my regular doctor was on vacation and this other guy suggested I have my heart murmur checked out. So six months later, when I was home from college, I spent overnight in a hospital having tests. I was the one tall skinny girl in a ward full of obese girls who were trying a new diet. Once again, I stuck out. After a variety of tests, of which only the revolting barium swallow remains in my memory (think library paste without the mint flavor), I was told I had a benign heart murmur, caused by a lack of space between my sternum and spine. I was perfectly healthy.

Except I wasn't. But I'll tell you about that next time.

If you want to know a bit more about living (and dying) with Marfan, something that might break your heart [I'm warning you, I like puns], watch this: