I'm sitting here in Leaf's room tonight, listening to the radio and having a bit of time to wind down after a particularly whiney day with Acorn (and no nap, so no break in the whines all day). It's calm here - quiet; the soft click-huff of the vent makes a rhythmic counterpoint to the easy listening station playing over the hospital's TV. The furniture is at least as comfortable as Starbucks (which is to say, not very, but I am starting to think that the rocking chair might work better if I use the chair I'm sitting in as an ottoman).
Most people's reaction to Leaf's illness is shock and horror. They assume we must be falling apart, sobbing in the corner or something. Some of them, hearing the word ventilator, assume this is a death watch.
Others are confused by our child care arrangements - namely, they are horrified that my husband is at work every day, and that Acorn and I are mostly going about our normal routine (or what there is of it - we've had less than a week at home to find our rhythm too, and it's just not there yet). But really, there's nothing to be done here, and no one that Acorn is comfortable staying with, and while taking a day or two off for an acute situation is reasonable, there's no company in the world that gives enough days to sit here for a week or two (we'll be at two weeks Thursday), or a month or more.
It's hard to get across to people that we really *are* at a point where this is just a normal day. Ventilators aren't scary - they are wonderful bits of modern technology that keep my kids alive. We had one at home until just recently, even. I have a resuscitation bag and I know how to use it. I know what all of the meds hanging on Leaf's IV pole do; I have given every breathing treatment they're giving and I know what they do. I understand the basics of the cardiology report, because we've read dozens of them before and seen symptoms and results first hand on a daily basis for years.
Some people think hospital stays are the worst thing ever. We've spent more than a third of our last 3 1/2 years with a child in the NICU - 15 months total. We've got another almost 2 months of hospital stays total for our children, and almost 6 weeks for me. The hospital (this hospital) is literally our second home - we spend more time here than most people spend at their cabins up north (or their vacation homes, for those who aren't here in Michigan).
Some people seem to think that I must need someone to talk to. No offense, but I have people - I have a therapist whom I'm paying a lot of money to...and she thinks I'm just fine. I have other special needs parents who understand, who've been here, who know.....who I can give the whole story to without stopping to translate medical-speak into regular-people terms.
I dunno. Some days I think we're just so far from other parents - on a different planet maybe - that having even a regular conversation is hard.