I think about this stuff a lot.
The kidney mom group I’m in, there’s a lot of medical support. “My kid this…,” “My doctor that…” etc. We can throw around the medical jargon like nobody’s business. And because protocols and whatnot vary fairly widely from center to center, we can compare notes and make more informed decisions – or at least have more information to ask doctors about. (another blog post on this later.)
There’s a lot of just “this happened to us today,” or “I’m so frustrated,” or “I can’t deal with this any more.”
And there’s also some “regular folks just don’t get it.” The days that someone’s in the hospital with their kid who is struggling, struggling, struggling, and their friends on Facebook are happily living their normal lives and whining because their kid fell and scraped up his knee. The days that you would cut off an arm with a dull knife if your kid’s only problem could be a scraped up knee.
I’ll switch to first-person here. I have had days in the hospital, frustrated because I’m away from home and because Teddy’s miserable from surgery, and because people just keep freaking hurting him and he doesn’t understand and it’s gotten to the point that even removing leads or changing a diaper is just too overwhelmingly much for him to deal with, and someone on Facebook is complaining that their kid has a fever and I honestly find myself dealing with a lot of anger issues about that.
And the issues are MY issues. OF COURSE people complain about a fever. It makes sense. Fever is a miserable thing for a kid sometimes. It’s not that people shouldn’t complain because they should walk around feeling grateful their kid has working organs. (Because I shouldn’t complain because my kid is alive, right? I know parents who would happily trade places.)
But it’s nice to have a place to complain to where people understand that you don’t mean anything by it, it’s just mostly insane jealousy.
The other side of the coin is that I often sit here and think, “I am SOOO happy for you that THIS is a major crisis.” And really. I am. I am genuinely sincerely happy that I know people whose definition of a Terrible Day, well, doesn’t involve an emergency trach change on the way home from the ER. Or a 911 call because your baby’s methadone wean didn’t go well about a month after she coded in the NICU. Frankly, I am happy that MY definition of a terrible day doesn’t involve these things.
Two of the other kids in our kidney group coded within a few weeks of each other, and a day or two later someone I know on FB posted how terrible it was that her kids all had some puking. And puking kids IS horrible. It is. And I considered telling her that two of my kidney moms had watched their kids code in the hospital in the last few weeks. Not to be mean, but because sometimes – sometimes – when you’re in the middle of things like puking, knowing that someone else is in a lonely hospital room watching their kid hover between life and death… well, it makes a lot of people grateful for the puking, and that simple change in attitude makes the situation seem not so terrible.
And then sometimes, it doesn’t. So I kept my mouth shut.