Well! We have finished Rob’s 50 hours of required driving-with-a-parent! We finished the last hours with an overnight road trip, which was fun and weird and we only went off the road twice.
That whole driving-hours thing was just not as bad as I’d thought it would be when we were doing the first few horrible boring hours in a parking lot. We ended up exploring our area quite a bit, which was fun.
Now he can test for his license, which I hope will ALSO not be as bad as expected. I really don’t think children should drive. It really seems like a terrible idea. They could be HURT OR KILLED, WHY DO WE LET THEM DO IT.
So that is one source of anxiety these days. A second is that I am so much jumpier about illness this winter. Normally I take it in stride: the kids are going to get sick, and everything is going to get passed around to all of us, and there it is. I focus on what good exercise it is for their immune systems.
This year, though, Edward is on medication for Crohn’s Disease, and what his medication does is suppress his immune system. Crohn’s Disease is, essentially, his immune system attacking his digestive system. They don’t yet know why the immune system does that in some people, and right now one of the only ways to stop it is to knock it semi-conscious. Dazed and sleepy, the immune system feels like it’s really too much work to attack the digestive system, and instead it goes away and takes a little nap.
Edward is doing extremely well on this treatment plan. His anemia has disappeared. He has color in his face; he’s still skinny, but he’s not so tired. He’s eating more. He doesn’t gag as much; he doesn’t throw up as much; he doesn’t have as many stomachaches and cramps; he doesn’t have to lie down after he eats. He’s growing.
So I don’t want to stop this medicine, obviously. But I do want to put a big shield around him, because his immune system is dazed and sleepy for ALL tasks: it’s not like we can say to it “Be chill about the digestive system—but be VIGILANT AND FIERCE about germs and viruses!” When actual germs and viruses come along, fully in need of being attacked, his immune system continues napping. A regular kid might get the flu and be pretty sick for awhile and then get better; with Edward, it wouldn’t be weird for it to end up with a hospital stay (or Worse, but let’s not turn our minds toward that; let’s pretend that “a hospital stay” is the farthest end of that particular spectrum)—which we desperately want to avoid because of all the scary germs and viruses THERE.
I get the flu shot most years, and I’ve gotten it for the kids, too, but I’ve never had a feeling of Intense Importance before this year. Normally Paul doesn’t get one (HATES needles, would FAR rather be sick for 6 weeks, isn’t sure he Believes In the flu shot), but this year he got one to help keep Edward safe: if someone in our household got sick, I don’t know how we could protect him. Normally I don’t care much if the flu shot turns out to be a good match for the strains of flu that show up; this year I CARE VERY MUCH. And unfortunately this year it’s NOT a good match.
It also emerged that Edward is not immune to varicella—that’s the virus that causes chicken pox and shingles. He got the two recommended vaccinations for it but, for whatever reason, they didn’t take. This is a highly unfortunate coincidence: that the child who Really Must Not Get chicken pox is the one who’s not immune to it. And he can’t redo the vaccinations (even if we were sure they would work this time, which we couldn’t be), because now that his immune system is suppressed, he can’t get any live vaccines, and the varicella vaccine is a live vaccine.
Luckily, most kids in our area get the varicella vaccination. The pediatrician said chicken pox used to be very common, and I remember that: EVERYONE had chicken pox. The only novelty was if you DIDN’T get it, or if you were one of those people who got it TWICE. Otherwise it was a big yawn. With the vaccine, it’s now quite uncommon; I don’t remember the last time I heard of it going around at school.
But of course not everyone is vaccinated. And, like Edward, some people get vaccinated but the vaccine doesn’t work. And, also like Edward, some people can’t get that vaccine.
And so herd immunity matters tremendously to me, and to Edward. We have to rely on our community to help keep him safe, and that can be a comforting, bonding, all-in-this-together feeling, as when I picture us all joining hands and making a circle to protect the weak and vulnerable members of our group: the little ones, the old ones, the sick ones. Or it can be a frustrating, helpless feeling: I can’t make anyone join hands. I can’t expect other people to get their children vaccinated to protect my child’s health. Why should they care about Edward? They don’t know him: he’s a theoretical child to them, just as their children are theoretical children to me. If their decision not to vaccinate their children is what ends up damaging (or Worse-ing) a theoretical child, how does that affect them? Not at all.
Most children can get chicken pox and be fine: I even remember reading an article about “chicken pox parties” where families would infect their kids on purpose to get it over with. Edward can’t get chicken pox and expect to be fine. He can’t get flu and expect to be fine. Even a cold might not be fine. I have to rely on other people to help keep him fine, and that’s a powerless feeling when I see how many people say no. I can’t make the decision to do what’s best for my kid; I have to hope other people will.

Theoretical child