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
Oh Swistle, so well written. I have a lot of empathy for you and Edward. I am an immunocompromised adult due to a kidney transplant and a vascular disease. I feel that same panic about the flu, etc knowing it could land me in the hospital or worse. Good luck throughout the cold and flu season. Sending good thoughts for Edward’s health.
I cannot talk about this subject rationally without flying into a frothy rage, but suffice to say I think it is just monstrous that we cannot rely on our community herd to protect children like Edward. I’m lending my shielding protective bubble to him in spirit and energy.
I feel the same way, Alice. It is a huge struggle for me to be rational and civil and calm with people who choose not to vaccinate.
Thanks for writing Swistle. This kind of post is the type of thing that just might change the mind of someone on the fence about vaccines.
Big, non-germy hugs to Edward – hope he stays safe and well.
I have been in your boat, immune system wise, for many years. My husband takes an immuno suppressing drug for his psoriasis and my son is at risk for his asthma to trigger with many illnesses. It used to make me absolutely crazy when my sister would bring her sick kids to my house for gatherings. I wanted to scream at her, “What is wrong with you? Don’t you know what could happen if either of the guys in my house catch what your kids have?” It is the same with school too. You see kids there who should clearly be home because they don’t look well or are coughing their heads off and I just want to call their parents and yell at them! I mean, I am glad they don’t have to worry about such things but I do. From October to April I am so jumpy and afraid that around the next corner will be the illness that sends one of them to the hospital. We use lots of hand sanitizer when out in public and lots of hand washing at at home and lots of prayers and good thoughts.
Godspeed to you all.
I am sharing your anxiety because Claire is still too little to have all the vaccinations she will need. It isn’t the same though. Claire’s situation will change with time.
I understand the desire for a bubble. Maybe a legislative bubble will be forthcoming.
I get it, too. We all get our flu shots and we all wash our hands and have good habits, but kids bring home illnesses from school all the time. They just do. When they do, we are very careful to keep my immunocompromised husband safe, but it doesn’t always work. That’s life. We do the best we can.
The state where I live (like some others) is currently experiencing an epidemic of whooping cough. We have all been vaccinated and/or boostered, but it still scares me: so many vulnerable people, who are not theoretical to their loved ones.
Thank you for telling us how well Edward is doing. I really, really enjoy picturing him growing and eating and not in pain.
I am not joking when I say I want to hold people criminally responsible if their medical decisions for their children cause other people to get sick and die.
ALSO, they are making those decisions not for themselves, but for their CHILDREN, who don’t get to choose for themselves if they get to be part of the herd or part of the danger zone, and that makes me ragey as well.
I live in California, in a poorly vaccinated (white upper middle class crunchy moms) town, and the rates make even me, with my vaccinated and healthy child, feel quite nervous.
Don’t even get me started on anti-vaxxers. Just…don’t.
I really feel for you and Edward. And I admire your restraint in this piece.
After his quadrillionith trip to Urgent Care, my toddler has finally been diagnosed with asthma. Other kid’s mild colds are his trips to the ER unable to breathe. So when I hear people poo poo whooping cough or the flu as “not that bad” I have a hard time controlling myself. I’m very fortunate that he’s able to be vaccinated for these things, but I still worry. Especially with the state of the flu vaccine this year.
Does Paul know about Flumist – the nasal flu vaccine? As someone with a needle phobia, I’m so glad for this option.
Flumist was a game-changer for me! I can’t figure out why people still choose to get the actual shot when there’s a painless option available.
I’ve been through the driving thing (although we didn’t have to do the 50 hour thing) so you have my sympathy…that WAS torture!!
As for counting on the community? It takes a village. Unfortunately, the village doesn’t seem to care anymore.
Oh, Swistle. xxxooo
I’m on the 6mp as well (for the same reason as Edward). My co-workers come to work sick because they want to use their PTO for vacation, not “waste” them on sick days. THIS DRIVES ME NUTS! and makes me want to wring their selfish necks.
Swistle, I feel you. I’m about to have a baby and I’m all frothy about some un-vaccinated kid harming my little baby.
My husband has Crohn’s too and is also on some drugs that suppress his immune system. He is the most medically unlucky person I have ever known – like if I were to list some of his medical issues right now you’d think I was lying, but for some reason he manages to not get sick much at all. One of his issues prevents him from getting a flu vaccine and somehow he manages to never get the flu either.
Anyway, I’m just throwing that out there as a soothing thought for you and I hope Edward manages to fend off the illnesses somehow :)
Is that a picture of Edward? If so, he is absolutely darling. I understand not wishing to post pictures of your kids but I love love love the occasional glimpse.
I’m sorry you are feeling this anxiety. I have an immunocompromised kid too and peoples’ blasé approaches to “nothing” illnesses are very upsetting. Let’s keep on keeping on til spring comes and we can all go breathe fresh air!!
Yes, that’s Edward!
Beautiful boy! Thank you Swistle.
Thank you for writing this. My husband has Crohn’s disease and it’s a terribly mean illness. He, too, is on immunosuppressive medications and he will be for the rest of his life. Everything is worse for him. Every illness – even a cold that starts in his sinuses – ends in his tummy. And every time he gets sick his immune system goes into battle…against his own body. Chronic fatigue. Chronic pain. And yet, thanks to medications he lives a normal life. No one would know how sick he is just by looking at him & most people we know don’t even know he has this disease. Medicine is amazing these days! But still I worry and fret because anything & everything we take home, germ-wise, means so much more for him than for the rest of us. Flu shots every year – not just because of how they can protect us but mostly because they can help us protect him. It terrifies me that he could pick up a PREVENTABLE disease that could have very serious consequences for him. This whole #iamtheherd thing goes so far beyond our just our children. I hope only the best for your family and especially for your boy. We know all too well the challenges that lie ahead – you all will be in our prayers.
He’s a beautiful kid.
I hope other parents around you act in good faith and with good sense rather than the selfish arrogance of the anti vaxxers.
What a well-written piece. The vaccination thing gets me so worked up as a mama of two (one of whom is too young to be fully vaccinated yet), and it is so upsetting to me that some people are putting MY children’s and your children’s and all of our children’s (and grandmas and grandpas) health at risk for no good reason. Anyhow, the restrain you show in this piece is impressive!
In any case, this may or may not help–but I also have an autoimmune disease and have been on some pretty serious immunosuppressants for 10+ years. While I certainly have gotten sick more than I did before (I was freakily healthy before ), none of the illnesses I have had have morphed into anything serious. It’s definitely a headache to pick up every little bug out there, but nothing for me has become serious. In any case, I know Google can turn up some alarming things when you look up certain drugs, so I wanted to let you know that the “worst case” scenarios certainly haven’t been the case for me…and I hope the same for Edward! So glad he is doing well overall and improving!
I won’t mince words, because I am of a generation, born in 1960-who saw adults that bore the ravages of Polio.
The reason there are vaccines-is because many, many people died of these diseases. So thankfully, researchers found vaccines to alleviate that.
I STRONGLY believe, if you will not vaccinate your child, then that child must be homeschooled. They are a menace to the population. Jiminy Christmas people, read your history! Children died by the thousands, is that where we want to end up?
I totally understand if this is too strongly worded, and none of the commenters were anti vaccine. Like someone said above, this is such a trigger subject for me, it drives me nuts.
It is our responsibility to keep ALL our children safe, it is our obligation. By the way, born in 1960, vaccinated for everything-we all were-and there was no autism at all in my schools. Time to think of other factors that might contribute to that.
Sorry for getting on my soapbox, Swistle, and would totally understand if you want to delete this…
At my Rotary meeting this week we had a presentation by a guy who had polio before the vaccine was developed. He brought up the Disneyland measles transmission and herd health in general and it was such a great reminder that we can’t get complacent with vaccination. This is an excellent post bringing the theoretical to reality. Keep advocating for your boy!
I too have very very strong feelings about people vaccinating their children and the good of the general health. I have many friends who I disagree with on many subjects, but I think not believing in vaccinations (since when is science a belief?!) is something that might end some friendships for me.
Also, I would highly recommend submitting this to your local paper and/or news stations. Perhaps putting a local face on it might make some of your community go ahead and get vaccinated.
Oh swistle. I have so much respect for you and the grace and restraint that you showed here. I’m thinking of Edward.
Beautifully done, Swistle. I second submitting this to a local newspaper or even HuffPo or something.
I agree that you should submit this to a publication/web publication and that picture…just beautiful. Also, you probably know this but the chicken pox vaccine is almost never given in the UK and I believe most of Europe. So, keep that in mind if there are families visiting/moving to your area from those areas. Not trying to give more anxiety producing information, but just think knowing more is better.
Thanks for this and blessings to you. +1 for the suggestion to send to local paper, Huffpo, etc. In the meantime, I shared … maybe us Swistle readers can send the post viral (a benign virus of course …)
Hugs, Swistle!
This topic always reminds me of a message Abigail Adams wrote to John.
http://www.masshist.org/digitaladams/archive/doc?id=L17760713aa
Like your family, she went through discomfort and inconvenience to arrange for Variola (cowpox) vaccination of her children. I admire her bravery, her frankness, and even her handwriting! She reminds me a little of a blogger. Short updates on daily life. Inspiring.
I should say, smallpox does not equal chicken pox, but the spirit of the thing is similar…
I am glad that things are working so far, and I completely share your frustration with people who go about when they’re contagious. Sometimes, it really can’t be avoided, but this is part of why we HAVE the whole concept of sick days – not just for the sick person to rest up, but to help keep the sickness from spreading! (Though I’ve got a lot of compassion for parents whose jobs don’t offer them – those are really tough situations.)
This is in no way a solution, but perhaps a good distraction – I just heard about the fox sanctuary in Japan, and when I saw the pictures (the ADORABLE pictures) of all the foxes, I thought of you: http://www.boredpanda.com/zao-fox-village-japan/
If I may offer a small comfort from my own experience, my 16-yr-old daughter is also on a immune suppressant for ulcerative colitis, and she is RARELY sick. The flu has been going around her school like crazy, and she wasn’t affected at all; my younger daughter had mono back in November and I was 100% certain that daughter #1 would get it but no, I was happily wrong.
She does take vitamins and supplements, plus a probiotic. Best wishes to Edward, and I’m so happy to hear he’s thriving!
While I do vaccinate my children for polio, diphteria, tetanus, and (at age 4) for measles, I choose to let them contract chicken pox at an early age (anywhere from 2-4) because that grants them lifelong immunity. In other words, I am not willing to use a vaccine on a child that fails her by the time she is childbearing age (well-documented) and thereby puts her infant in utero at risk for birth defects.
And this is the problem with the vaccine debate: people who don’t vaccinate their kids with ALL the vaccines are inconsiderate, the line goes. Actually, by allowing my child to suffer chicken pox, I am guaranteeing that by school age she is and will remain immune and therefore not a danger to children like your son when they are in junior high, say. I can’t tell you how many of my friends’ vaccinated kids contracted chicken pox around age 12, because they were no longer protected. In fact, the chicken pox that we managed to contract for my 3 youngest was given to my friend’s child by a vaccinated classmate. Go figure.
The issues involved are much more complicated than they seem. For example, if the medical community were a tad more flexible and listened to the concerns of parents who sense that vaccinating a NEWBORN is a bit dangerous and who simply request that the vaccination schedule be changed up a bit, it wouldn’t have the credibility problem that it has right now with the anti-vaxers. Also, if it didn’t treat all vaccines as equally important and all diseases as equally dangerous, it would also have more credibility.
Good luck keeping Edward healthy this winter – it will be hard, if only because he has so many siblings around. Luckily, you’ve already vaccinated him for measles, so you shouldn’t have to worry about that one, at least. But don’t assume that someone who hasn’t vaccinated their kid for chicken pox is selfish; there might be a very good reason for it.
That said, I’d like to smack in the face anyone who refuses the polio vaccine, but that’s just me.
or your kid could get the varicella vaccine, have occasional titers (especially before trying to have a child) to see if/when she loses immunity, and then get a booster as needed. That avoids the risks and discomfort associated with actually having chicken pox, with the benefit of a much lower chance of getting shingles later in life.
Also, getting chicken pox does not convey lifelong immunity. Just as some people lose immunity after the vaccine, others get chicken pox more than once. See http://www.hopkinsmedicine.org/healthlibrary/conditions/infectious_diseases/chickenpox_varicella_85,P00619/
The shot was originally developed to protect adults who hadn’t managed to contract the wild variety and that is still how it is used in Europe. The idea of subjecting a kid to regular titres might work, but the problem is, our medical community has not put that on any sort of schedule, which means they do not think it is important and do have a blind confidence in the vaccine’s efficacy. See above re credibility. Also, I have adult kids. I have no control over when they go to the doctor and what they ask when they get there. There is no way they would have been going for regular blood titres. This also assumes that everyone has the $30 copay to do this regularly. I know that, at one point in our lives, we certainly didn’t.
But my main beef is that, by elevating chicken pox to the status of a dangerous disease for the general population, they have undermined their credibility about the necessity of vaccines in general. Yes, polio vaccine is essential! But when they essentially equate polio with chicken pox, they create a problem. When they insist on injecting a kid with essentially 5 or 6 vaccines at once, they also create a problem. There are no studies on whether this is a safe idea. I am lucky in that my doctor agrees to spread them out a bit. But if he had insisted on his way or the highway, my kids would have been left in the lurch. And for no good reason.
There’s actually great and abundant evidence that the current vaccine schedule works: all the kids who were vaccinated on it with few to no side effects, and who now have extremely low risk of catching communicable diseases.
The idea that not everyone can avoid a titer later in life so they should be exposed to wild varicella makes no sense. Either way you’re exposed to chicken pox (vaccine or through contact with a sick person) you could lose your immunity later in life. Research shows that the vaccine actually makes this less likely. Clearly a moot point for someone with adult kids, but parents of little ones might want to think this through.
Also, my brother, born in 1964, got chicken pox when we all did (we were born in 66, 68 and 69) and had some effed up version of it which caused him to get Dermatomyositis, which is a connective tissue disease from which he still suffers after effects, at the age of 50. I don’t think it’s necessarily selfish to do what you are doing, because you think you are doing it for a good reason, but I do think you are mis and under informed.
My child has Juvenile Dermatomyositis. Wow. I was just going to comment about that. Imagine how surprised I am to see someone mention it.
I have seen so many, many nasty comments on Facebook about this issue in the last few weeks…. I scrolled down to read the comments here with some trepidation —- and I feel so GLAD that the comments on this post are thoughtful and supportive! There are good, kind people on the internet too! Sweet, sweet picture of your boy.
That is one handsome theoretical child. What a charmer.
This is brilliantly written. Thank you.
I am (an adult) not vaccinated against whooping cough because apparently I had a horrid reaction (turned blue? stopped breathing?) as an infant to that vaccine — my mother dunked me in the kitchen sink full of water (and dirty dishes), I am told, and lo, I started breathing again and was OK (though I did, albeit many years later, go on to pursue graduate training in the social sciences — so who can say?), but did not get any more (whooping cough) shots as a kid, and even today having recently asked my MD if I should revisit that (as that vaccine has gotten safer) was told … no. So — I am counting on herd immunity, and of course we all know how well that is working (well, OK for me so far, but you see my point). I also work with someone (who is not THAT much older than me, and I was born in the late ’60s — I am not sure whether she is truly old enough she wouldn’t have been vaccinated, regardless, or whether there is some other backstory e.g. being in a different part of the world when she was a child? No idea.) who has mobility impairments caused by polio and — yikes. And of course I know she is lucky, as a polio survivor. But, man — who would want to go back there?
So, yeah — we get every vaccine we can lay our hands on (and are candidates for), and are grateful we can.
My mother is one of 10 children – only 4 of whom survived childhood. Two died from whooping cough. Two died from measles. Chicken pox killed another one. One died from diphtheria. That’s right – a 40% survival rate in her family.
I also have issues with states and school districts that issue “personal belief waivers.”
Oh I am so sorry you have so much to be anxious about. The driving anxiety will get better. TRUST ME! I never I thought it would but once my daughter had her license for a few months the anxiety subsided. Of course I am still on alert everytime I know she drives but not nearly as much as I once was. I can not imagine the anxiety you must feel for Edward and the thought that he may get sick. I know another child who had the same experience with vaccines not taking. It took a lot of time but they finally figured it out and once she was well enough she received the vaccines. Hang in there! It is so hard to be a mom, isn’t it?
My brother is on … Humira? I think? Anyway it’s an immune system suppressor and every one in my house was sick at Christmas and he couldn’t come. For two seconds I was kind of hurt because I felt defensive about it but then I got over it, because I am REASONABLE. I am kind of lazy about the flu shot for my kids, if I am at the doctor while they are giving it out they get it and even my super dramatic seven year old, who when she got her last round of shots insisted on a CANE to walk out of the office, felt nothing when she got her flu shot, there’s nothing to it. I hope you make it through the season okay, it’s almost over, right?
Firstly, I love the photo. It’s the perfect punctuation for the end of this post.
Chicken pox is fairly benign so I wouldn’t stress too much about it. If you hear about it going through the school, perhaps home school for the incubation period.
We’re fairly diligent in a few ways regarding immunity with Kevin: if he wears clothing in public, like say a movie theatre or a restaurant or hospital, I wash them afterward. I don’t let him recycle clothes the next day in that situation.
He’s 50/50 with using hand sanitizer. It depends on the environment, hospital = yes, other places = meh. I’m not a huge fan of using it, I vote for strengthening the immune system when a person can, with exceptions of course.
He does use a paper towel to open the door of public bathrooms and will often use his foot to flush the toilet. These are things you might not think about with not being a boy. :)
You can only do so much and after that, you just have to go all Frozen on the topic and let it go. I remember stressing about this as well. You can only do so much and it sounds like you’re being methodical & thoughtful about it. Soon, it will just become a new normal for you.
But yes, the anti-vax thing: AAAARRRGGGGHHHH.
I’m going for my own measles titer tomorrow as I was very sick getting the shots as a child so my mom *stopped* at one measles shot. I jump when I hear a cough, I make my kid swash hands ten times a day and change clothes after big parties with lots of kids and germs. Herd immunity folks, herd immunity. And no one in my house is immuno compromised (we all have asthma which is its own hell). I was on the fence about vaxxes before kids, came quickly around to them after #2 was born at the height of swine flu and now will get them all on time thankyouverymuch. Previous commenter- flumist isn’t an option for many (like my asthma house) because it is a live vaccine (like the varicella) and those with breathing issues need not apply.
I read this on Friday and have been thinking about it all weekend. I hear so often the rebuttal for not vaccinating: if your child is vaccinated, why do you care what I do with my child, my child is healthy so why is your child my problem, etc., etc. And this sums it up so beautifully, the “theoretical” child who is not theoretical at all.
Also, I had the chicken pox at age 19 and it was so terrible that when I was pregnant and learned there was a vaccine, I was very happy. For the record, my mom DID take me to pox parties when I was a kid, but I never caught it then. That’s what they did back in the 80s and that was the only option available, in terms of immunity. I cannot see how a vaccine for chicken pox is worse than getting the chicken pox, as someone who had it during final exams in my second year university; I was never so sick as I was then.
Swistle – I love this post. It is beautifully written, as everyone has already commented. I agree that it should be submitted to every publication that might influence people in the “deciding to vaccine” age range. I am baffled by people who do not vaccinate and feel sick at the thought of how that can affect some children who cannot be vaccinated for whatever reason (too young, medication interaction, allergy, etc.).
Your beautiful Edward is the FACE of the theoretical child! I really hope this goes viral, as someone mentioned.
PS. don’t tell me you took that picture of him with a camera phone. It looks professional. Add photographer to your resume, Swistle.