Monosomy

I was perusing the archives of a fairly well-known blogger last week and came across the word monosomy. This particular blogger was explaining all the things that came occur when a person with a balanced translocation attempts to procreate.

See, I've never actually seen or heard the word monosomy before.

Knowing that meaning of trisomy, obviously, I was able to figure out what monosomy meant.

I also knew how it related to Olivia and 5p-.

But...

For some reason, that word really hit me hard. It rattled around in my head. Monosomy, monosomy, monosomy.

Why does hearing/reading that word hit me harder than hearing the doctor say she has 5p-?

Does it make it more real?

Not really. Olivia is Olivia. She's still my sweet, beautiful girl. Her chromosomes are no different today than they were a week ago, when I'd never seen or heard that word.

Of course, being a child of the internet, I googled monosomy.

Google brought up Turner's syndrom and 5p- (Cri du Chat) as two monosomies that are compatible with life.

Wow.

I realize that 5p- is actually a partial monosomy. Olivia does have some of that short leg of her fifth chromosome. Does adding partial to the front of monosomy make a difference?

Not really.

I'm not sure where I'm going with this.

I guess I just want an honest account of my emotions concerning everything about my girls and the things that affect them.

And obviously, O's chromosomes affect her. Duh.

So this has hit me harder than any other part of her diagnosis.

When I first heard of 5p-/Cri du Chat, it was in the abstract. Olivia was not even a year old and she was nowhere near being diagnosed. So I had almost a year and a half to take it in, to turn it over and over in my head, considering the possibility of it applying to my little girl before it actually did.

This time, though, it's right there and it obviously applies to my child.

Perhaps that's why it's hitting harder. It doesn't actually make O's diagnosis more real. It is what it is, but maybe, just maybe, because I can't consider it in the abstract, I can't think about what it means without applying it to Olivia, it feels more real, it feels more final, it hurts just a little more.

So I'll work through it. I'll roll this word, this monosomy, around in my head, feeling it out, figuring it out even as it applies to Olivia.

It doesn't change her. It doesn't take away from the joy of having her ask for red lipstick every single day or insisting on tights instead of sock. It doesn't make her less joyful or even less frustrating.

This is about me this time. My reaction, my hurt. But it won't hurt for long. Because it can't. I'll be too busy applying red lipstick and find a different pair of tights because the first, second, and third pair bothered her toes.

Life gets in the way of thinking about things like this for too long. And that's a very good thing.