So many FPIES Mama’s talk about frustrating or dangerous situations they’ve been placed in thanks to the ignorance – or rudeness – of friends and family.
Situations where they’re invited to a play date with the assurance that all food will be kept in a safe location, only to arrive and find the snacks are laid out on the coffee table and they have no choice but to leave or spend the entire play date hovering over their child like a hawk.
Or where they travel hundreds of miles out of state to visit family; family who assures them they will help keep unsafe foods out of the child’s reach. When they arrive, though, there’s one relative that keeps trying to sneak foods to their baby (“Oh, come on, it’s just a bite – it can’t hurt him!”) and another relative that constantly leaves food out where the child can reach it (“For goodness sake! You’re just paranoid!”)
Or any other number of situations I could outline where people are thoughtless and endanger a child’s health – and even life – with their ignorance, rudeness, and basic jerkiness.
We’ve been pretty lucky; we have a few relatives that we suspect believe we’re over-reacting, paranoid, and “playing it up”, but they’ve never said as much to our faces and always behave as if they will follow our rules. Everyone else – friend or family – has been wonderful about taking Jed and Zac’s food allergies and intolerances seriously. They prepare special meals, ask questions, work hard at keeping food out of reach, and are scared to feed my kids anything without our approval.
Part of the reason we’re so lucky, however, is that I’ve strictly limited our possible exposure opportunities. I’m not joking much when I say we’re shut-ins.
Play dates have been non-existent for the last year. I can count on one hand (with fingers leftover) the number of times Zac’s feet have touched the ground at a fast-food play area. He’s only walked in a park one time in his life for a very short while, before it got to be too stressful for me to keep an eagle-eye on him and a general “Is he still there?” eye on Jed.
We don’t even go to church any more because it’s too dangerous for us there.
I don’t give anyone the room to be rude, thoughtless, or ignorant about food allergies in my kids lives. I’m too protective, and I’ve worked too hard to keep them safe to let anyone endanger them.
And it kills me.
My kids don’t get to socialize like I want them to. They don’t get to explore like I would like them to. They don’t get to play like I want them to.
I’ve read too many reports from the other Mama’s, so I know: someone out there is going to hurt my children because they’re just too stupid to listen to me, or too careless to have my trust.
This makes me wonder: whatever happened to good manners?
“Manners”, for these purposes, is defined as:
the socially correct way of acting; etiquette
I understand that many people do not understand food allergies. They think it’s a fad, or a “crazy Mom” thing, or…I don’t know, exactly, but they just don’t “get it”.
Fine. Fair enough. However, I have yet to meet a single Food Allergy Mama that thinks anyone else on the planet should “get it” regarding their child.
All any of us have ever asked for is consideration and respect.
Consideration and respect have absolutely NOTHING to do with food allergies! They do, however, have everything to do with good manners and being polite.
Polite: marked by an appearance of consideration, tact, deference, or courtesy
Simply put, it’s just good manners to respect the health needs of your friends, family and guests.
For all those people out there who countermand a Mother in front of her child when she’s outlining the food rules for you, ask yourself this: if she were telling you about the homework her child must do for school, or the rules for behavior that are expected of her child, would you likewise scoff, scold, undermine, deliberately disobey, and generally make things harder on her?
I think it unlikely. Most people are willing to go along with a Mom who says she insists her child use “Mr. So-and-so” instead of a first name, or that her child must finish an essay for school before joining the family for festivities.
So what, pray-tell, is the difference?
Why would someone go along with manners and schoolwork, but not the rules necessary to keep the child from getting sick – or even dying?
I honestly don’t know. Maybe they’re selfish. Maybe they’re jealous of good Mothering. Maybe there are just a lot of sick, cruel people out there who want children to get sick before they believe. Maybe they secretly dislike the parents.
Maybe people are just jerks.
But if society was, well, more civilized, none of this would be a problem.
If those people were exhibiting good manners, they may still secretly disbelieve, scoff, and roll their eyes…but they would go along with it because well, it’s just what a polite person does.
Years ago I read a story about a sit-down dinner with some Very Important People. Not all the guests were VIP’s, though, and some had never seen a finger bowl before. When one of the guests at the table picked up his finger bowl and drank from it, the hostess immediately picked hers up and drank as well!
She knew what he was doing was “wrong”, but to spare him from any embarrassment she copied his behavior as if it were perfectly normal.
It was an exemplary display of good manners.
Why won’t more relatives and friends of kids with food allergies “drink out of the finger bowl”?
I just don’t know.
Until they will, though, we won’t be joining them at the table.
Let’s hear from you: why do you think people are so unwilling to be gracious about food allergies?
Wish I knew! Not even sure what is up with our guy and food. Just know that since we drastically changed his diet he’s happier and finally sleeps better. Family and friends think I am nuts because of how he’s fed. Nothing processed and no milk or gluten. They don’t see his personality transform an hour after he ingests something. Was so scared to drop him off at his new program today because the teacher acted like I was overprotective and they were just pouring milk for anyone at random. Almost took him back home with me but pretty sure leaving his epipen for his penicillin allergy made her take me seriously. We are fortunate that none of his food problems seem to be life threatening but can make him miserable. Sorry for the long response but this has been really frustrating me lately and I don’t like to go to church or family functions because no one pays attention. Can’t imagine how I would feel I’d feel if his reaction were more serious.
Ugh! I’d have been terrified of the new program, too! Milk! We just live in a different reality than most people, I guess.
Also, it is amazing to watch them change before your eyes, isn’t it? It’s like a form of possession sometimes!
Random theory: I think food is too emotionally tied for too many people. Food stopped being simple nourishment for most of America long ago. It’s comfort. It’s a sign of class. It’s sense memory. It’s a way of getting a brain chemical surge. It’s bonding with family. It’s addiction. It’s so many different things to different people. And most of us lie about what it is to us. You are asking people to consider your children’s health needs with a substance that they truly don’t consider to be healthy. They are bringing their own baggage to the table. Comfort eaters can’t stand not comforting your children. Addicts are embarrassed or jealous that you can control their controlled substance. Etc.
DING DING DING DING!
Rebecca, I think you just hit the nail on the head. I think THIS is the answer to the question. It is so, so true…especially the part about “and most of us lie about what it is to us”. You are so smart!
I think the vast majority of people don’t understand allergies and their seriousness. I think many believe it’s a “made up story” for attention.
Part of the problem was started with the non-smokers who, to gain power against smoking, suddenly developed “allergies” to smoke. No, they weren’t allergic but just gained the power to stop others from smoking around them. It became a PC thing and it worked. I’m not for or against smoking but I see it as a way people have made others disbelieve true allergies and their seriousness.
Food allergies ARE very real and as Ashley said one can see personality transformations very soon after an allergic child gets into something wrong for them. I’ve watched Jed go from a normal acting 3 yr old boy to Dennis The Menace in a matter of minutes.
Yes, I’m a believer! But as much as we try to watch him like a hawk it’s virtually impossible to see everything he’s in to all day and night. There’s no knowing who or what was somewhere before you got there and danger lurks at every turn for an allergic child like Jed or Zac.
One just has to remove or remove oneself from the “disbelievers”.
It is hard to watch him like a hawk. He’s pretty fast and sneaky! You’re right, though, about the disbelievers. Sad, isn’t it?
I think in the end people truly just don’t “get it”. As Rebecca said…food is not about being “fuel for our bodies” any longer . Many people believe that if we just start giving them small amount of offending foods (like allergy shots), then they will slowly be able to accept the food. Blaming Mom. As if the reason my children cannot eat food is because I have with held it from them… if I just loosened up and let them have the “swipe” of cool whip, the “swipe of frosting, the sip of juice … they would be fine and I would “see” that I was making it all up!
What they don’t see is the massive allergy shiners that appear within minutes…”oh, they must be tired”. The low grade fevers, the bright red slapped cheeks, the mucous and blood in stools, the night waking, the rashes, the detox sweats, the lethargy, the inability to walk for more than a few minutes without taking a 1 hour rest, the flu like symptoms that have them melting down into a tantrum, the “fog” that comes over our children’s brains that makes them appear on the Autism Spectrum (which magically goes fully away when offending food clears from their bodies). This lasts for days until the food clears.
Or in the more severe reactions …vomiting so profusely and repeatedly that their esophagus starts bleeding, severe low blood pressure, the inability to regulate their pulse, rushing to the hospital with a limp and lifeless child in your arms because they ate one cheerio. Being sent home because it was just a “flu” even though you knew better! Being so isolated and alone with nothing to feed your child and no one who seems to know what to do about it.
These are the reactions people don’t see. Why don’t they see them? Because as Mom’s we are hibernating at home doing everything in our power to get their bodies back to baseline again. That we are using sheer stubborn strength and will power to make them better. That we are willing to be human pacifier’s for 5 straight hours (been there too Carrie) just because the alternative means the hospital.
And once we get our precious children back on track…we begin a new food trial. Desperate to increase the amount of safe food options. Not knowing if what we feed our child next will start the same nightmare over again. Will broccoli be poisonous to my son? Or will he now be able to eat “trees” like his friends? (Answer…pure poison…3 attempts. 3 vomit to lethargy for 72 hour style reactions.
It is safe to say that our life as we knew it was destroyed. Our bank accounts and our retirement funds have been drained by medical bills and by the cost of safe foods. Our household income was slashed when I decided to stay home, regardless the cost, because one cheerio made our lives a living hell and nearly destroyed my son.
We have lost close friends, but gained many new ones. We have learned to accept that people won’t “get it”. It makes no sense…even to us. Yet we march on. We walk a crazy path. You can’t make this kind of crazy up! The doctors are leaning from us. We are paving the way praying that 10 years from now no child will suffer as ours have with ignorance and misunderstanding. Our frustration, angst, and passion have called us to be the VOICE of FPIES. Reaching out one person at a time, sharing our journey, gaining compassion, and spreading awareness!
Carrie, thank you for shining a bright light and sharing your family’s struggles and triumphs!!! You are making a difference!!!
Oh, Wow, Erica! What a story. You managed to sum up my entire blog in one comment! LOL
I agree with you – Rebecca is right. And YOU are right, too – people don’t see the reactions because we’re so busy hibernating at home desperately trying to keep our kids safe (and then they turn around and eat cat poop, dog-gonnit).
Thanks for the pep talk; you are also making a difference! All of us FPIES Mama’s are! I’ve never met a community of people more “there” for each other. Thanks for being a part of that. Hugs!!