Talking with others about how people see kids like mine - kids with substantial medical issues, medically fragile kids, complicated kids - it's been clear that part of the problem is just that the rest of the world has no frame of reference at all.
Here's the reason. People think in very simple terms - 3 boxes. You're either healthy, sort of sick (fever/cough/rash, lay around on the couch a couple days), or sick enough to be in the hospital. If you're sick enough to be in the hospital, you're there a couple days, and then home to lay around on the couch for a few days, and then you're healthy. That's how modern medicine works.
Kids like mine...well, let's talk about Leaf, because Acorn is getting closer to fitting that version of normal than he's ever been...close enough to fool people most days.
Leaf is in the hospital right now. She's been there going on 6 weeks, which is way longer than most people can wrap their heads around, much less the 5 1/2 months she was in the NICU, or the 9 1/2 months than Acorn was.
A freakin cold landed her in the hospital for 6 weeks and counting. Who goes to the hospital for a cold?
There's no going home and laying on the couch a few days in order to be normal for her after this either - we're coming home with 100 lbs of medical gear (and a car battery!) that will go wherever she goes.
No matter how happy, smiling, and normal she looks (other than the tube in her neck for breathing and the tube in her belly for eating), she's not healthy per se. She's at risk. She's likely to end up in the hospital for most illnesses. The ones she doesn't won't be a couple of days of chicken soup, they'll be the kinds of things most people go to the hospital for - oxygen (more oxygen than normal), nebulizers running round the clock, multiple meds....the only thing we can't do at home is an IV.
Even EMTs will stop and stare if we ever call 911. The best they can do is scoop us up and run to the hospital - their oxygen tank is bigger, which is about the only reason we'd call anyway. When Acorn had RSV, we called 911. The paramedic in the back with us told the hospital dispatcher that they were doing nothing for him - we'd already done more than they could think to do.
And none of that fits into one of those 3 little boxes up there.
So...schools, daycares, friends and family....all these people have a hard time knowing how to work with our kids, because they just don't get it - they can't find a way to categorize our kids if they don't fit into one of their three boxes. So they pretend our kids fit (or shoehorn them in, like the old version of Cinderella where the sisters cut off their feet to fit in the slippers).
And that's where it fails. Our kids aren't going to fit into those boxes, and a one-size-fits-all solution isn't going to work for us.