Monday, April 7, 2008

musings

Two hours of reality tv later, I am still staring at a blank rectangle where my post is supposed to be. And I am drinking wine out of a plastic Mickey Mouse cup.

I realized today that my birthday this year will be 8-8-08. Too bad I am not turning 8 -- that would be sweet. Or, then again, I don't think I would like to be eight again. See, I've been thinking a lot about how my fragile x story is different than a lot I've heard. Most of the people I've met have been first-generation X-ers. I remember one summer when I was about eight (maybe?). We spent a week at a cottage in Kentucky with my mom's side of the family. One day I was running around with my best girl cousin when we were either compelled or instructed to remove the sand and general schmutz (see Sunday's post) from our bodies. We were in the shower (I think for fun and to conserve hot water -- one ten minute shower hit two bodies) when our male cousin barged in and threw open the curtain. He was trying to play with us. I don't remember what was said, mostly "eek!" I'm assuming. Later, after we yelled at him and complained to our parents, my mom came in to give us a firm and loving talk about increasing our patience quota and understanding differences. My cousin has fragile x. Little did I know, so do I.

I also remember my great uncle. How when I was little I was confused by his muffled speech and perseverations. How he'd repeatedly tease us at Christmas, "That's mine. That's all mine," as he swept his hand towards all the presents. My face must have read, "Is he for real?" I found it simultaneously strange and heartwarming. And now I am working to supress my mama-bear emotions when children think my fraggie is obnoxious, naughty, or weird.

In high school my mom came to talk to my biology class about fragile x during our unit on genetics. I remember a sense of just knowing that I had it. That's why it was such a shock when we got the test results -- negative. My mom doubted it immediately, but it wasn't a priority to be retested until I became pregnant in college. And it didn't become a matter of real urgency until I the ultrasound technician informed me that the blinking blob on the gray and black screen was a boy.

And after the papers came that told me that not only am I a carrier of fx, but that I have a full mutation, I wasn't at all surprised. And, like many moms, I "just knew" the diagnosis of my baby before the doctors did. That's not to say that the call from his pediatrician on his one month birthday was easy to hear, but it was easier because I had been preparing myself.

Which is why I think genetic testing should be offered to every pregnant woman, but most importantly to every newborn. Because I've had the advantage of knowing. Punkin has had the advantage of receiving services since he was four months old.

And while it's important to understand that the FMR1 gene is just that -- one gene -- and that every fraggie is as varied as the rest of us, it has been a unique experience to stand back and see my fraggie (3), my 23 (?) year-old cousin, and my 80 (?) year-old uncle living happily with their Xs.

I guess I've been thinking about my fellow fraggies because it's strange to be on the other side. To feel a newfound connection with two people who for most of my childhood eluded me. If my one X was a Y, we'd be even more alike. And if Punkin's X wasn't fragile, I'd go on living without a deeper understanding or appreciation for who these men are.

I think sometimes about having more. On Sunday some of the moms said they were grateful they never had to make the decision -- they were already pregnant or their second child was already born when they received the diagnosis. It's a big question with even bigger consequences that I'm frequently asked. My answer? I don't know. I loved being pregnant, even though it was unplanned and I was very sick. And if I met and married someone who wanted kids, I would want them, too. I would want birth announcements and painting the nursery and doing it all again but on purpose. I tried to enjoy it with Punkin as much as possible, especially after I found out my status, because I knew it might be the only time I would feel little legs kicking and feel a little heart beating and sustain a miracle inside myself. But I also know that adoption is an option. And I know that taking chances and being okay with whatever the results may be is an option. I'm just relieved I don't have to make the choice today.

To read about similar topics: Fragile What?! and Basically FX. If you comment, please be kind. These women aren't looking to discuss politics, just their experiences.

5 comments:

Laura said...

I want that for you too. But the thing is, even watching from afar, I can see how God is watching out for you and has a plan--and that makes me feel good that these events will happen in a beautiful way (just as David is a beautiful gift).

Umma said...

I'm glad you shared your perspective on this. I should have known before I ever got pregnant since my sister is affected by FX (undiagnosed) and I had a cousin with FX (diagnosed and kept secret) but I was able to enjoy my pregnancy and Monkey's first year without worry. I'm grateful that I was able to have that experience once.

Kristiem10 said...

Thanks for sharing your perspective on this topic. I decided to blog about this as well.

SB said...

your b-day is 08-08? SO is my daughters! And she IS turning 8 this year..

I loved that you shared your story.

Anonymous said...

Just remember that God has a plan. Imagine what our family would be like if your mom hadn't been told, way back when, that we couldn't be carriers because Grampa was fine. Or if we had known that your cousin was a fraggie from the beginning. We would be minus a lot of cousins and FUN!!!!!!
I Love You!!!
Aunt Patty