As a parent of a child who has resulted in us having a very different life than we used to have, I find myself seeing things in ways that I never would have before. It's hard, though, to remember that others are like we were before - they don't have this perspective, and that allows them a level of privilege that we can no longer afford.
They have the privilege of wondering whether "routine" surgery for a non-life-threatening condition is safe enough, and thinking that they want second and third opinions before putting their preschooler under anesthesia.
Acorn's first surgery was at 26 days, and just less than 2 1/2 pounds, and had it not been done, he likely would not have survived. He's been through 6 procedures under anesthesia in the last 2 years.
They have the privilege of putting off antibiotics for common things like ear infections to see if they heal on their own.
Acorn has had a ruptured ear drum, and is likely going to need tubes. Besides, any infection could become a respiratory disaseter when you're talking about a kid who is still on oxygen.
They have the privilege of going to sleep at night without worrying about whether their child will keep breathing.
@kysilka wrote about this in a guest post over on sneakpeakatme.com and did so far better than I can.
They have the privilege of grabbing a diaper (and maybe a bottle) and leaving the house.
At one point it took us a duffle bag and a double stroller to get everything Acorn needed in to dinner or a doctor's appointment, with time constraints on how much oxygen we had available.
They have the privilege of complaining about how horrible overnight hospital stays are.
Acorn spent his first 291 days in the NICU. While hospital stays are inconvenient, there's a vast difference between a week in the hospital and several months.
They have the privilege of dropping kids off with a friend or family member for a night out.
Acorn requires trained care - only one family friend has been willing to learn it all and make themselves available. Other than that, it's nurses, take him along, or don't go.
They have the privilege of sending their children to school on a school bus.
Acorn needs a trained care giver on the bus with him to go to school this summer. The school only allows employees on the bus, and their idea of training is a short explanation of how to suction.
They have the privilege of sending their children to school (preschool, daycare, etc) at all.
Last winter, we went nowhere due to the risk of germs. We're all terrified of sending him this winter, and our pediatrician may yet say no, he needs to be home.
This interesting life we have teaches us a lot about what's important. Acorn is a survivor, though, and we will get through all this, even if I have to leave most of the parenting communities I've been a part of the last few years to avoid some of the really irritating comments.