The Fragile X Files: It's All in the Family

Wednesday, March 30, 2011

It's All in the Family

This morning I was back in New Ulm - my hometown - to talk to the Sertoma Club about Fragile X. Aliza and I drove down the night before and got up well before dawn today. She was a trooper. I told her she didn't have to come, it was going to be such a short trip, but she knows about as much about Fragile X as I do and she thought she should come along in case I forgot anything.

It's a surreal experience to go back to your hometown. I'm there occasionally because my parents still live there (at least part time) but I'm usually there on weekends, and usually only go to Target and maybe a restaurant or two. This was a gathering of business people in the middle of the week, at the country club.

I know I haven't lived there in around 23 years now, but I still look around every time I'm there and wonder, how come I don't see anyone I know anymore? Who are all these people who live in my hometown now?

Okay, back to the original topic here -- the presentation.

I only had a short time to talk to them, so I very quickly went over what Fragile X is, what the symptoms are, how it affects entire family trees, and talked a bit about research and the future. And of course I included a bunch of very cute pictures of the kids.

And it went very well, I think. They all seemed rapt with attention and had lots of questions.

I made a family tree, with all the members from my generation and two back -- so my parents and grandparents -- to show where the Fragile X gene had passed down to my twins. It was quite wonderfully dramatic.

First I showed this screen

Then I switched to this one -- the same as the previous one, but with red X's to indicate full mutations or carriers.

You'll notice I did not "red" one of Aliza's X's. I know she is a carrier.

We haven't told her yet. I knew she was going to be there. I wasn't sure how much attention she'd pay. But I wasn't ready to tell her. And I most certainly am not ready to discuss it with a room full of people.

All the other carriers, I'm sad about. But they are grown ups. WE are grown ups. She's got her whole wonderful life ahead of her, and I don't want her to wonder what it'll mean for her, yet. I don't want to take away from the innocence of her childhood any sooner than I have to.

So I thought about it and decided not to "red" her X. I decided to pretend we haven't tested her yet. We pretended we don't know.

And wouldn't you know it? Somebody asked me about it. A woman in the back asked me if we were going to have her tested, and I thought two things; 1. I thought YES! She really gets it. She understands the point I was trying to make here with these two slides side-by-side, one with red X's and one without. and 2. I thought, wow, good thing I thought about what to say in advance, in case someone asked me. So I lied to her. Looked her right in the eye and told her that we didn't know yet and we would cross that bridge later.

When it was over, I talked to the mayor of New Ulm quite a bit, who remembers me because he was also my 3rd grade teacher. Lots of people came up to tell me how much they enjoyed it and to thank me for coming to talk to them. It was really something. I could get a big head here if I'm not careful.

Luckily there's the fact that I still wipe 6-year-old butts every day to keep me humble.

This afternoon, Aliza had a friend over to play outside for a bit. AJ watched out the front window as they went out the front door. "AJ, do you want to go out with the girls?" I asked him.

"Yes," He said quite clearly. So we put our jackets and boots on and went out. Zack didn't want to go, but we made him.

Finally, I just have to comment on this sign.

It's in Courtland, a town right outside New Ulm that I pass through every time I go home. This sign appears on a short stretch of road that crosses the river. It's on both sides of the road, so you'll see it whichever way you are headed.