Wow. Two days after starting this blog, an internet buddy pointed me to THIS ARTICLE in Brainchild Magazine about the exact.same.thing.
The author's pregnancy and NICU experience were very much like mine. To the extent that I thought, damn, I wish I wrote that! Her son is older and has different issues than Susan, but her feelings about the stress of a sick child and the lameness of the Holland analogy were my own.
I think the folks who hand the Holland story to someone with a premature baby are just displaying what I've found to be a common romanticizing of the disabled and the carers for the disabled. We're all supposed to be brave, cheerful, and strong in our faith in God. Our kids are supposed to be sweet and affectionate, and if not cute in the traditional sense, cute like that kid from the tv show "Life Goes On." We're supposed to be so grateful to be 'special."
Not that Susan is not in fact gorgeous and funny and affectionate. She is. But her being sick isn't a blessing. Some time last year, when Susan was really sick and I was just despondent with exhaustion, frustration, and fear, I tried telling a close friend about how mad I was that this had happened to us. She said, "But you know you're really lucky, right?" And yes, I am lucky that Susan is alive and doing as well as she is, all things considered. But compared to most new parents, I don't think I could have been called lucky. That's what's so hard. You can't even complain and feel sorry for yourself when you've got every reason to do so, because the rest of the world demands a Pollyanna.
Last night actually went pretty well. We put her on a pump at a lower rate than usual and only had to get up once to vent her at 4 and then again when she woke up at 8. Venting every four hours is totally doable.
Here's another shot of my spectacular girl.