Thursday, January 26, 2006

What I Got and How I Got Here

A little over two years ago, I had my third baby. A boy, after two girls. Slightly premature, a little trouble breathing. So off to the NICU we went, and we wound up staying for 11 days. I don't actually recommend a NICU stay, if you were wondering. And in particular, I don't recommend the NICU where we stayed. Anyway, every day, one of the neonatologists would spring some new horror on us. "Your son has a big head." "He breathes too fast. This concerns us." "We can't really assess the extent of the potential brain damage until he's older." One night, after a particularly grueling day in the NICU, my husband drove us home to our other two children, and he said, "You know, it's like the girls say, 'You get what you get and you don't get upset.' I won't get upset, but I want to know what I got."

This, to me, seems to be an incredibly rational thing to want. But it's apparently not so easy to get. Because it's two years later, and we still find ourselves without answers.

We can spend a day, weeks, and months, even, with our son, enjoying him, assured of the progress he has made, and we say things to each other and our parents and friends, things like, "Well, he's starting to add words now, so we're really sure that he'll be all caught up by the time he's three or four," and "Just look at his problem solving skills. Any kid who can drag a chair over to unlock the pantry to reach the Cocoa Puffs -- I mean, come on, that's a life skill right there." And then, the next day, some neurologist mentions a syndrome, and Dr. Google gives our kid ALL THE SYMPTOMS of it, and I feel that coldness wrapped around my heart again.

I just want to know what I got. And this will be the space where I can talk about it and try to get to a good place.


Meow said...

Welcome to the Blogosphere ! It is an interesting place, with plenty of room to air your thoughts, ask questions, whatever. You will come to find heaps of new friends, who will be there for you no matter what.

A friend of mine had very, very premature twin girls (around 24 weeks, I think), who are severely disabled. She doesn't know what tomorrow will bring, so just takes each day, one day at a time. That's all she can do. No-one has the answers, things will happen in their own time. Her and her husband don't dwell on their disabilities, or what they may never be able to do, just on the fact that they have them at all, and all the lovely things they are able to do.

I don't pretend to know what you are going through, as I really haven't been through anything like that. However, if you need to vent your thoughts, the blogosphere is a great place to do it, though.

Take care, have a great day, Meow

Lisa said...

Oh god...the coldness wrapped around the heart feeling. You've described what the realization that your child is not well or "normal" to a T.

I don't know what it's like yet to not be able to dwell on your child's disabilities, as the previous commenter says. I hope I get there some day. Until then, it's nice to have a place to talk it out, no?