This information this post is based on is several years old, more than several, but I was thinking about it today. When Edward was newly diagnosed with Crohn’s disease and was about to start on immune-system-suppressing medication, he had some bloodwork done, and also a TB test. I don’t remember why things happened in the order that they happened, but the upshot is that one of the things the bloodwork showed us was that Edward’s chicken pox vaccines had NOT been effective—but we found that out AFTER he was on the immunosuppressing medication, so it was too late to get the vaccinations redone. So he’s just not immune to chicken pox, despite being vaccinated on the recommended schedule.

I was AWARE, statistically-speaking, that a certain percentage of vaccinations don’t take. But somehow I didn’t expect MY PERSONAL CHILD to be affected. He had BOTH doses of the chicken pox vaccine, and right on schedule! How can they just…NOT HAVE WORKED? And why couldn’t it have been, say, Elizabeth, or Henry, or Rob, or William, who got the vaccinations and they didn’t work? Why EDWARD, who is now on immunosuppressants and CAN’T get any live vaccines and also now ABSOLUTELY CAN’T be exposed to chicken pox, on top of everything else he has to deal with? If Elizabeth (or Henry, or Rob, or William) got chicken pox, it would likely be similar to when I got it as a child: irritating and itchy and fully survivable. If EDWARD gets it, he has to go immediately for medical treatment, and he’s likely to end up hospitalized while it plays out, and that’s the HAPPY outcome.

Luckily for us, and for Edward, MOST kids in our area get the chicken pox vaccine, despite chicken pox not being a big deal for most people. So even though it would be very dangerous if he were exposed to a case of chicken pox, that’s not likely to happen. I don’t know the last time I even HEARD of anyone around here having chicken pox. I still worry about it, of course I worry about it—but what a treat, what a relief, that it’s not something I need to worry about MUCH. People who would probably not be in danger from chicken pox are nevertheless getting the chicken pox vaccine, so the population at large is less likely overall to have chicken pox, and so the population at large is less likely to expose Edward in particular to chicken pox.

It is not a good feeling, to go through life having something dearly treasured and so completely irreplaceable be so vulnerable to common dangers. My other kids will probably go to therapy later and complain that I loved Edward best because I was so fretful and protective, and I DON’T love Edward more than I love them, but I do worry about Edward more. He is no more treasured, and no more irreplaceable—but he is so additionally vulnerable to common danger.

I got the flu once when the twins were toddlers. The nurse who gave me the flu shot that year bragged about how quickly and painlessly she gave shots—and, as she pulled the needle out of my arm (so fast! so painless!), I saw the little arc of fluid, presumably my flu shot, vaccinating the air. I remember how sick and how exhausted I was. I would put the twins into their high chairs and then collapse into the recliner to close my eyes for 30 seconds. I would put some dry cereal onto their trays, and then weep a little while lying with my cheek on the cool kitchen floor. It went on for weeks. I was so tired. It lasted so long.

But I was in my thirties, and healthy and well-nourished, and not compromised in any way other than being the already-exhausted mother of toddler twins. I could be ill for awhile, and weep a little and collapse a little and lose a few pounds, and then recover.

Edward is not in that situation. He can’t just be ill and then rest and then recover. When he got a sinus infection, he ended up in the hospital twice, surgery twice, antibiotics for seven weeks. Things that are no big deal for other people are a big deal for him. This is true too of preemies, and of babies in general, and of elderly people, and of people already ill with something else, and of people whose flu shots didn’t work, and of lots of other people in lots of other circumstances.

I think of this every year when I get my flu shot. I have Edward to think of, but also my nephew, who is particularly susceptible to respiratory things, and my mother, who is also particularly susceptible to respiratory things. Of course I don’t want to get the flu again: I HATED having the flu! But it’s not about ME, because I can get the flu normally, and recover normally; it’s about Edward, and about my nephew, and my mother, and about making sure I don’t get the flu so I don’t pass it on to them. And in a broader sense, it’s so I don’t pass it on to any of the many, many other people I might not personally/individually care about in the same way, and yet of course I don’t want to hand an elderly woman a library book and have her die of my flu germs or whatever.

The trouble is that all of us are so IRREPLACEABLE. We can’t SPARE us. And so I would go so far as to say that all of us who are ABLE to do things to protect the more vulnerable among us have an actual ETHICAL DUTY to do so: a small thing for each of us to do, but something that collectively makes a HUGE difference in the protective barriers around others—like how I don’t have to worry so much about Edward getting exposed to chicken pox, the way I would have had to a generation ago. Even Paul, who hates needles and is the babiest of all babies about shots (“That STUNG so much more than LAST year!,” he complained TWICE when we got our flu shots today), gets his flu shot, to protect Edward and to protect our nephew and to protect everyone else’s Edwards/nephews/grandmothers/babies/irreplaceables.

It used to be easy and obvious to figure out how to block advertisers on Facebook, so then Facebook changed it. Here is how you do it now:

In the upper righthand corner of the ad, there are three dots; click the three dots and choose “Why am I seeing this ad?” from the pull-down menu that appears. As if you care / don’t know.

(screenshot from Facebook.com)

This will bring you to a little screen that says “It’s because you are a cash cow for us and we make our money by selling your eyespace to advertisers!” In the upper righthand corner of that justification, click on Options, then click on “Hide all ads from this advertiser.”

(screenshot from Facebook.com)

Do this one hundred billion times, until you have blocked all possible advertisers on the planet Earth. This is a lifelong task. Just keep doing it, knowing you are working for good.

On my own Facebook page, and I don’t know if this is the same on yours, I’ve noticed that I get a whole bunch of new ads, and I block them all and it feels like there are a million of them, and then suddenly all is quiet and there are no ads to block. Time goes by. I forget about ads. Then, one day: ADS EVERY THIRD POST AGAIN. I get back to work, systematically blocking them all. It feels like there are a million of them and I never be done. Then, quiet and no ads. And so on.

My tireless energy and fervor for blocking individual advertisers, despite the endless cyclical futility, reminds me of my childhood best friend’s elderly neighbor, who could be seen in the dawn hours hacking with righteous vigor at individual dandelions, not only in his own yard but all over the neighborhood. The futility of the task did not defeat him. The battle was its own justification, and its own reward.

When I was first doing keto (my most recent update here), I didn’t mess around much with sugar substitutes. I was nervous about it: some people said certain artificial sweeteners didn’t count as grams of carbohydrates even if grams were listed on the package, and other people said yes they DID count and/or that some counted as grams even though ZERO grams were listed on the package, and a lot of people rolled their eyes and said “Just see how it affects your blood sugar!!” as if that is something the standard person can Just See. Also, there are big debates about whether eating sugar substitutes makes it harder to adjust to not eating sugar, and/or whether your body might “think” you’re eating sugar, and so on. It seemed too difficult and confusing, so I avoided it.

Now that I’m more accustomed to keto in general, and now that I’m maintaining instead of trying to lose weight, I mess around a LOT with things containing sugar substitutes. Here are my favorites:

(image from RebelCreamery.com)

1. Rebel Butter Pecan ice cream. Hands down the absolute best keto treat I have tried. I am waiting to find out it’s a scam or mislabeled or something. Five grams of net carbohydrates in the entire pint; that’s about the same as in two tablespoons of peanut butter. Of the first three ingredients, one is cream and another is pecans, and that is how it tastes. It’s so good. And butter pecan is not normally a flavor I’d reach for, so it’s a little mystifying.

(image from RebelCreamery.com)

2. Rebel Strawberry ice cream. Honestly how do they do it. I don’t know if I would be so amazed by it if I hadn’t gotten so accustomed to “treats” such as raw pecans/almonds (very mildly sweet!), but I DID get used to it, and so now I am a-swoon. The strawberry ice cream has perceptible strawberry matter in it, distributed very finely so you get a little bit in every bite.

There are a ton of other flavors; our store went from carrying two flavors to carrying four to carrying eight, so I think it must be selling well, and I’m hoping to try all the flavors eventually. I like the chocolate and vanilla flavors just fine, though I tend to eat them only when we’re out of butter pecan and strawberry. I thought the mint chocolate chip tasted bitter and not very minty, but that didn’t stop me from finishing it. The cookie dough flavor was weird and powdery/gritty and didn’t taste like cookie dough; I didn’t finish it. I need to give the peanut butter fudge another try: I attempted it when I was expecting too much of low-carbohydrate desserts. I haven’t tried any of the others yet.

(image from BuiltBar.com)

3. Built Bars. I bought the sampler box on my sister-in-law’s vigorous recommendation, and at first I thought they were pretty okay but kind of weird and too expensive, and that they’d been fun to try but that I wouldn’t be reordering; by the time I finished my sample box, I’d ordered two more boxes (free shipping, discount on more than one box, free two-bar sample with each box, free six-bar sample with two-box order) (still pretty expensive, I warn you). A whole bar is five or six grams of net carbohydrates; I generally eat half a bar, because they’re expensive but mostly because I’ve noticed after half a bar I’m not enjoying it as much. I like all of the flavors except banana and coconut: I usually love coconut, but these taste to me the way coconut-scented car air-fresheners smell. And I won’t even try the banana.

The texture is hard to describe, and took some getting used to. The site says “light and fluffy” and that is not AT ALL how I’d describe them. I’d say “chewy” or…I’m not sure. Like an extra-soft Starburst or something? When I saw “whey protein isolate” high on the ingredients list, that made sense to me. It reminds me of the ingredients you can use to thicken a sauce (flour/water, cornstarch, etc.), and if that doesn’t send you running out to buy some, I don’t know what will! But they have grown on me to such an extent that, when recently I realized I was unexpectedly running low on them, I felt a little panicky.

(image from Lilys.com)

4. Lily’s Dark Chocolate baking chips. When I’m craving something sweet AND I’m kind of hungry, I mix a few tablespoons of these with pecans or peanuts to stretch out the eating-chocolate experience and make it more filling.

(image from Lilys.com)

5. Lily’s chocolate bars. I especially like the Dark Chocolate Almond, but the little crunchy bits of almond make it harder for me to stop eating it, so I usually get the regular dark chocolate. It feels exactly like eating chocolate, except I like it less because I generally like milk chocolate way better than dark, but I don’t like the Lily’s milk chocolate as much as the dark.

(image from QuestNutrition.com)

6. Quest bars, but really only the chocolate chip cookie dough flavor. I like a lot of the others just fine (brownie, maple waffle, mint chocolate chunk, white chocolate raspberry), but if I have the chocolate chip cookie dough kind on hand, that is ALWAYS the one I want. It’s dense and grainy in a way I first found disappointing and now enjoy. I most commonly use these as a easy portable meal replacement, like if I’m going to be away from home with Edward all day and don’t want to worry about what I’m going to eat. I’ll bring some cheese sticks, some almonds, and a Quest bar.

I find the Quest Hero bars (chocolate caramel pecan in particular) to be suspiciously good. Like, I keep checking the label to make sure it’s okay. But for some reason I get a slightly averse feeling when I think about eating them, as if my body would prefer I didn’t.

(image from QuestNutrition.com)

7. Quest cookies. Similarly to the Built Bars, these satisfy a very particular type of craving. Sometimes I just want a COOKIE. These do not taste particularly great, and they’re very dry and crumbly and a little bitter, but something about the texture makes me feel as if I’ve had a cookie, in a way that no other keto food does. I like all the flavors about the same. I usually eat half a cookie.

(image from Jello.com)

8. Sugarless Jell-o. Sometimes you just want to eat an entire bowl of something sweet. I like the lime, raspberry, orange, and lemon flavors the best. I’ve tried whipping heavy cream to put on top, and that’s VERY GOOD; you can add some artificial sweeteners to the cream. But it’s generally more trouble than seems worth it, so usually I just eat the Jell-o on its own.

Paul was complaining to me about some shorts he found in the bottom of his drawer after he ran of out his usual shorts. He didn’t really like the fit or the length, which was fine, let’s donate them so you never wear them again. But then he said he remembered the REAL reason he had stuffed them way at the bottom of the drawer, which was that the front had to be pulled down for him to pee.

I don’t know how long I stared at him blankly before I managed “…As opposed to WHAT?” It turns out boys, or at least SOME boys, actually USE those little hatches on the fronts of their pants/underwear to pee. I guess I was assuming…well, I don’t know what I was assuming. Because why would the hatches BE there if no one used them? But it seemed like such an unlikely thing: to undo two little hatches, to reach a hand inside and… Well. I don’t know exactly what I thought, but I suppose I was thinking the little hatches were decorative/traditional remnants from another, more primitive time.

Paul was, understandably, more on the “Why would they BE there otherwise?” side of the discussion, but it was taking me awhile to let this new information sink in. I mean, imagine if women’s clothes had similar hatches: little snap-flaps between the legs of all our pants/shorts/underpants. Imagine if we just opened those hatches and then peed through them, because it was TOO MUCH TROUBLE to pull down the pants/underpants.

Considering women do NOT have such snap-flaps, it felt even more absurd to have a man telling a woman that he rejects an entire pair of shorts because those shorts force him to pull them PARTLY down in front in order to pee. Oh, how very difficult! Oh, the inconvenience! Imagine having to PULL DOWN a pair of shorts in order to pee! Who could be asked to live that way?? It is unacceptable!! “…I guess I’m complaining to the wrong person,” said Paul.

I am so busy. I am so tired. I’d thought I had a fair amount of extra time, but I added a part-time job and now I am run off my feet and stressed and tired all the time, not to mention losing all my Candy Crush streaks.

It is at least a job I like. I am working mornings at the library. I’m a page, which means I re-shelve things and fetch things and collect materials from the book-drops. I don’t know if I will like it long-term (I seem to like jobs for six months and not any longer than that), but we will see. I like being at the library. I like library stuff, and library activities, and library fundraisers. My co-workers are smart, which is nice for an entry-level job. And something about putting things in decimal order does something therapeutic in my brain.

Also, the work is surprisingly physical. I have had to deliberately switch which knee I naturally kneel down on, so that I wouldn’t get one leg so much more exercised than the other. I am the indoor type, so this is an improvement in my usual physical activity levels.

It feels like a financially/mentally/physically good change in many ways, but also I am so busy and tired. And, more importantly, things like “Oh, Edward has to go for another follow-up appointment” are HUGELY stressful, now that I have to continually ask for the time off from work. I started the job two days after we came home from the hospital after his first surgery, so I’ve already had to ask for many, many schedule changes, which makes me feel unreliable and difficult when I KNOW I am NEITHER. It would be so much better if this had happened after, say, two full years of showing up five to ten minutes early, leaving five to ten minutes late, and never missing a shift without giving two weeks’ notice.

And without the recent Edward complication, this job meets all my weird job requirements for this stage of life. It’s part-time. It gives me a pleasing answer to the “And what do you do?” question, which is higher on my list of priorities than you might expect. It’s moderately flexible. It’s nearby. It’s not a “warm body” job: if I have to have a day off every seven weeks for Edward’s Remicade infusion, they don’t have to find a substitute for me as they would if I were a bus driver or a caregiver; on that same note, I won’t be called EVERY SINGLE DAY and asked to cover shifts for other employees, as I was with my last warm-body job. It’s entry-level, but not fast-food or retail or customer service. It’s indoors, and a comfortable temperature. There’s room for learning more skills and adding more hours as time goes on. (It doesn’t pay well, but with a list like that, SOMETHING had to give.)

And I do like the work. The other day, I went home after my shift and had lunch, and then texted my supervisor to ask if she wanted me to come back for a couple of hours, because I’d had to leave a TON of work behind (the long weekend meant a FULL book-drop) and I found I was itching to get back to it. Like, I WANTED to do it. And another day, I was re-shelving some books in the New section, and a patron asked if I’d recommend any of them, which was on one hand WAY too much pressure, and on the other hand I COULD recommend one of them, and then she sat in a chair in the library reading it for like an hour, and then checked it out!! That is close to the level of thrill I used to get at the doughnut shop when someone would let me pick the doughnuts for their dozen.

Things that have made me sad since William left for college:

• Mistakenly thinking I heard the washing machine going (it was someone doing dishes) and briefly assuming William must be doing laundry, then realizing William is no longer here and so is not in my way doing his laundry. This should have been a happy thought but WAS NOT.

• Finding in the laundry room a last basket of clean laundry scraps from William doing all the rest of his laundry and then leaving behind the cloth napkins, dishtowels, handkerchiefs, aprons, and other things that were tossed into the empty washing machine and so got mixed in with his things.

• At the grocery store, not needing to buy pasta, pasta sauce, buffalo chicken patties, or frozen burritos. (These are the things William makes himself for Second Dinner.)

• Briefly thinking we should wait until William gets up to see if he wants to go to Target with us.

• Getting a dozen doughnuts (a family tradition after anyone has a medical procedure) and doing the Doughnut Math wrong. (The children don’t understand why this one made me sad instead of happy, since it means more doughnuts for each of us.)

• Going into William’s room to make sure he didn’t forget anything important, and not needing to knock.

• Going into William’s room to look for the cat, and seeing the bed stripped, and the cat sitting on the folded comforter.

• Talking with Paul about something related to Thanksgiving, and saying “the boys” will probably be home for that.

• Putting out only three plates for kid dinner. Getting out only three vitamins.

• Doing all meal math wrong, then correcting it. “Let’s see, toasted cheese, I need 8 slices of bread…no, 6.”

• Doing Child Inventory and briefly thinking William is at work or up in his room, instead of at college.

I am worn out and wan, and WordPress just told me I failed to “prove my humanity” by correctly answering a math problem, which was 3 + 1 and I am just CERTAIN I got it right, but I have to live with the idea that I will never be able to achieve vindication on that.

This past Tuesday, Edward had a follow-up with the surgeon for his sinus surgery. The surgeon took one look at him from across the room (Edward’s eye area was still slightly puffy, and a little lump had appeared along the bridge of the nose the day before) and switched us to a different exam room, one with a giant up-the-nose camera system. He looked up Edward’s nose and ordered another CAT scan, which he said he’d be able to review the next day. The next day the office called to say we had another surgery and overnight hospital stay scheduled for Friday.

It was another abscess, in the sinus near the side of the bridge of his nose. The surgery was done partly by going up through the nose, and partly using a 1/4-inch incision on the side of the bridge of the nose (no stitch because they wanted it to drain). I don’t remember all the right terms, but the infection there had broken through the barrier between that sinus and the area where the eye is, so we had to have the whole ophthalmology-doctor experience over again, with her suitcase and the eye drops; she said the eye still looks unaffected but we have to go back and see her in a month.

We also had a visit from a doctor from Infectious Diseases, because ENT wants him on an entire additional month of antibiotics, and especially with his Crohn’s disease (but even without it), that’s something they like to take extra care with. She seemed very, very bored with us, which is an encouraging if annoying thing for a specialist to be. We will see her again in a week, at the follow-up with the ENT surgeon.

(Also, last time we were at the hospital it was freezing, and all the staff were wearing fleece with their scrubs, and I wore my cardigan the whole time and was cold at night even under the covers. So this time I was smart and wore jeans and brought a warmer cardigan. And our room was nearly 80 degrees and I slept with no covers on and was constantly slightly sweaty. One of the nurse assistants told me they are working on the broken air-conditioning room by room.)

I put a little rant-question on Twitter last night about how to administer an every-8-hours antibiotic (when the specialists emphasized it should REALLY BE every 8 hours), without having to wake the child or disrupt the school day, and I took the tweets back down because I realized I already know the answer to that, and it’s that you can’t, and you just have to figure out what you’re going to do: fudge the 8 hours or else DO IN FACT wake the child and/or disrupt the school day. There’s no weird schedule thing I’m missing where it does work.

The lovely thing about the timing of the surgery is that he has this long weekend to recover. The downside is that I am increasingly concerned as his Remicade infusion (for the Crohn’s disease) gets more and more overdue (he missed it when he first came down with the sinus infection near the first week of August), and I need to call his GI specialist to ask about that, and I also want to be reassured that ENT and Infectious Diseases really did consult with them about the antibiotics plan, but I can’t do that until Tuesday. Well, no, I could do that right this minute and talk to whoever is on call. But it is not that much of a thing to me. Like, I have already worked through the “You REALLY CAN call the person on call; that is WHY they are on call” thought process, and I DO KNOW I could call, but it REALLY ISN’T that urgent to me: he can’t have his Remicade infusion over the long weekend ANYWAY. I can wait until Tuesday to hear about when he CAN have it.

Also William is now at college, and also I have been working at a new part-time job for two very poorly-timed weeks, and those things are adding significantly to my worn-out wanness so I mention them here but will have to talk more about them later.