This post was originally published on Semiproper on April 18, 2013. The feedback I received from this blog post and other allergy related blog posts that followed inspired me to create a brand new space for parents with children who deal with food allergies, environmental allergies, asthma, and eczema. Thanks so much for visiting Scratch or Sniff!
Remmy was 18 months old, sitting in her highchair, and Sophie was a newborn. Jack was feeding Remmy crackers and hummus and I noticed that Remmy’s face looked strange.
“Is her face red? Or is it the lighting?”
“I don’t think it’s red.”
I leaned in to look at her closely, and I knew something was very, very wrong. I reached for my phone to call 911. Her face was turning bright red, hives were spreading, and her eyes were swelling shut. Jack frantically searched our closet for Benadryl, only to find none. I left my newborn at home with Jack while Remmy and I raced to Yale’s ER in the back of an ambulance.
That night we discovered that Remmy is allergic to sesame. Tahini is made from sesame. Tahini is in hummus. Unknowingly to us, this was the beginning of our lives as food allergy parents.
Fast forward four years later, and we have two girls with severe food allergies, and one girl (the newest one, Minnie) that’s due for her first round of allergy testing. At any checkup, a nurse will ask me what they’re allergic to. I rattle it off, in this same order – dairy, eggs, soy, wheat, peanuts, tree nuts, sesame, and mustard.
We’re not alone. We’ve met other food allergy parents, and the one thing in common that we’ve all experienced is this: people don’t quite believe us.
One more time. People don’t believe us.
Not in a, “NO, you’re lying” when I have to clue someone in about allergies, but many times people think we’re exaggerating or that these are our preferences – the same way a person chooses to be a vegetarian or wear pants on Thursdays.
[At a birthday party]
“Oh, so Sophie’s lactose intolerant?”
“No, she’s allergic to dairy.”
“Can’t you just give her Lactaid?”
“Your kids are gluten-free?”
“They have a wheat allergy.”
“Everyone’s gluten-free these days. Unless they have Celiac, they’re not really ‘allergic’ to it.”
If someone spills milk on Sophie’s arm – without her ingesting it – she’ll immediately break out into hives and have an asthmatic reaction. If she eats wheat, she’ll be awake at midnight, hooked up to a nebulizer – and then again in four hours. If Remmy comes in contact with peanuts, she’ll have an anaphylactic reaction, start vomiting, and I’ll have to stab my four year old in the leg with an Epi-pen and hold it there while she cries.
These aren’t preferences. These foods are poison to them.
If you find me at the park this summer and ask to look in my tote bag, you’ll find no fewer than four Epi-pens (you’re supposed to have two for each child, because sometimes one Epi-pen isn’t enough in the case of an allergic reaction), Beandryl tabs, and an inhaler among the juice boxes and the sunscreen.
If it’s your child’s birthday and you’re bringing cupcakes into school for him or her, the teacher will notify me so I can bake two – using flaxseed and other substitutes – for my daughters to bring in so they can celebrate with your child. Sometimes there’s little notice, but if I don’t have time to bake a cupcake, I’ll send them to school with two allergen free cookies. They’re kind of a weak substitute, but it’s better than them feeling left out.
When we first got the entire full list of “they can’t haves,” we were skipping birthday parties and celebrations, simply because I couldn’t bear the thought of them not being able to eat a single thing at a party. Now we improvise and adapt and do a lot of cooking in our home. We pack lunch boxes when we head to parties and we usually bow out right before the lighting of any candles.
Many families end up homeschooling their children, because being at a school – exposed to tons of food “dangers” is just too risky. We’ve seriously considered that route, too. Thankfully, their preschool director has been so incredible about making sure the girls are safe. We send in snacks for them to share with their friends, and their teacher makes sure that nary a peanut crosses their table.
Food allergy families’ grocery bills are outrageous. We have to buy rice milk, allergen free bread, flour that you can only find at Whole Foods or on the black market, and rice cheese. We rarely go out to eat, because even if we ask for their meal to be cooked with olive oil, how do we know that the chef didn’t JUST cook something with butter on that same grill top? (If anyone starts a food-allergy-friendly food truck, I will be your biggest supporter!)
Here’s what I’d like for people to know:
– When you poke fun at children like mine, it’s hurtful. Food allergies are life threatening.
– I don’t expect you to cater a menu to the girls’ allergies. If you invite us over, we’ll gladly join you – and pack a couple of lunchboxes.
– Please don’t feed or offer any food to my children without clearing it with me first. That innocuous looking cracker could mean a trip to the ER for us.
– Just because you can’t see something (like autism or a food allergy or anything that you cannot physically observe with your own two eyes), doesn’t mean it’s not there.
I know that this stuff is kind of new. Before I had kids, I wouldn’t think twice about unwrapping a piece of candy at a party and handing it to a child. I know better now because I’ve been through the trenches of being a food allergy mom. I don’t expect anyone to know everything or treat my children differently, but I’m hoping this post sheds a little light on what food allergy parents experience, and I’m hoping it encourages the fellow food allergy mom or dad.
And if you’ve ever invited us to a party and put aside a little fruit plate or bowl of sorbet for my kids, thanks. :) It means a lot to them (and me!).