Family Life · Food Allergies

On Food Allergies and Wanting to Feel Normal

Dear Joey,

This is how food allergies make me feel: Trapped. Surly.

 

 

This is how food allergies make our kids feel: Separate. Left out.

 

Much has been said — is being said — about food allergies, and it’s no wonder: these things are getting more and more common. I read there are more of us all the time– families dealing with food allergies who find themselves fighting a battle for which they’re most likely not prepared for at all, if they’re anything like us. But the frustrating thing is: I know so few of these people. In our world, it feels like it’s just us. Alone.

When I was growing up, I knew of two people with food allergies: Tony, a cousin; and Tina, a classmate. I don’t have much memory of Tony dealing with his allergies, except for a few fragmented moments in which my Aunt mentioned how dangerous a peanut allergy can be, and how soy is in everything. I was too young to care much about what that actually meant in their day to day lives.

But I do remember a bit more about what it was like for Tina. She unabashedly asked about ingredients in whatever foods were being offered to her, and everyone took it pretty seriously. And by seriously, I mean this: people believed she had an allergy, and they did their best to keep her safe and included at the same time.

I remember her coming to our house once to spend the weekend with us once while her parents went out of town, which would quite an ordeal these days, I imagine, with the barrage of instructions and medications and half-crazed parents trying their best to stay sane while doling out instructions for the care takers (I know, because I am one of those parents). But 25 years ago, it was almost no big deal. Her mom dropped her off with Mocha Mix, Rice Krispies, and a big pot of chicken and rice soup to help offset any trouble feeding a dairy free child might be for my mom. Tina’s mom certainly didn’t insist we clear out our fridge or restrict our own consumption of milk while Tina was with us. She must have thought my mom was a reasonable person, and trusted she would take the allergy as seriously as it needed to be taken–meaning, of course, don’t feed dairy products to Tina.

Food allergies is a thing now, though, meaning more kids have them–like ours–and our society’s infrastructure has changed a bit to address the problem. Many schools are nut free; EpiPens are normal; kids wear medical alert bracelets. Even kids without an allergy of their own are at the mercy of rules set up to keep other kids safe. Like our own Addie: she had to give up peanut butter right along with us the day we found out about Mia’s allergy, and now is learning to drink vanilla almond milk because of little brother’s dairy allergy. She can’t take almond butter sandwiches to school because it’s a nut-free zone, and if we’re at a birthday party where either of the other kids can’t eat the treat provided, we make Addie skip out too.

Even so, Addie takes most of it in stride because she has a pint-sized understanding of why some foods are off limits for our family. She’s watched both her brother and sister break into hives, watched me cry and pray and give medicine, and even spent the afternoon in the ER after little brother suffered a particularly bad reaction. She may not have an allergy of her own, but her food life is lived within the parameters of what’s safe for her sister and brother to eat, and for the most part, it doesn’t bother her.

But I know it must bother other kids, other families that don’t have allergies. They’ve got to be frustrated when forced to abide by rules that are irrelevant in their own household. Like the little circle of moms at Addie’s dance class who bemoaned the fact their kids had to deal with the fallout of food allergies even though they themselves don’t have them. Just a few months ago, I overheard them saying how frustrated they are about not being able to send peanut butter sandwiches to school, and what an inconvenience it is to have to worry about potential allergens when packing their own kids lunches, or making birthday cupcakes, or bringing in candy for parties. They said things like: I mean really. Our kids shouldn’t have to suffer because they don’t have an allergy. It’s not their fault nor their responsibility. 

When I heard all this, I wanted so badly to walk up to them and say, “If your kids did have food allergies, wouldn’t you appreciate rules put in place to help keep them safe when they are out of your immediate care?” But I didn’t. I’m not brave and I feel ill-equipped for that discussion because, well, they have a point. I already feel beaten up by food allergies themselves, and I couldn’t bear the thought of trying to fight another battle.

I am thankful for the people around us who do the best they know how to be supportive and watch out for our kids, but even well-informed people make mistakes. Since starting preschool a year and a half ago, nuts have snuck their way into her classroom at least three times, the most recent of which was on the last day of preschool last year when a fellow mom made cupcakes topped with a graduation cap made out of a peanut butter cup. These things happened in a nut free school that we love and trust. Not one of those people intentionally put our daughter at risk.

I didn’t raise a stink about it. I appreciated the gesture of making sure Mia had a cupcake too, and I was right there to explain to her what the chocolate really was and why she couldn’t have one (something she used to take in stride, but is increasingly having a difficult time with). I was a little peeved, but at the whole idea that food allergies are a reality for us, and not because anyone tried to hurt Mia on purpose. Things turned out alright. Plus, I constantly beat myself up for my own lapses in judgment that have plunked our kids down in the middle of a food allergy mess. Who am I to get mad at others for genuinely trying to keep them safe and included?

Just two weeks ago, I rushed Emery to the Emergency Department after he had mistakenly gotten a hold of Mia’s empty milk cup. I should have known better than to let her drink it on the couch because Emery is getting really good at getting a hold of his sister’s stuff now.  I warned her not to let her brother get her cup, and to her credit, she did her best to put it out of his reach, but while I had my back turned for half a second, he stretched those little arms as far as he could, grabbed the cup, and took a sip of whatever was left.

I snatched the cup away, scooped him up, and kicked myself for creating this problem in the first place while I went to find the Benedryl. He’s had hives from milk before, so I wasn’t panicked, exactly. But before I knew it, his left eye started to swell, and the swelling crept down the side of his cheek, distorting his little face just enough for me to know something was different this time. I called you in a tizzy, crying and scared and very much needing you to stay on the phone with me while I used the EpiPen for the first time. You did. And after it was over, we flew to the hospital to make sure he would be alright. He was, but riddled with Benedryl, he was beside himself.

Just a week later, I gave Emery Sunflower Seed Butter, a seemingly benign food touted as a safe alternative to peanut butter. It’s safe for schools. Mia eats it happily, as does Addie. Emery showed a small sensitivity to it a few months ago, but I figured that had probably passed because these things often do, and there wasn’t any way Sunbutter could be a real problem for him, in my mind. After just about a half a teaspoon of the stuff, Emery’s body was riddled with hives that seemed to spread faster than any I’d seen before. They started on his chin, erupted on his left arm and quickly got thick and red and covered arms and tummy.

He didn’t vomit or swell or show any other sign of distress, so I gave him Benedryl and watched and waited. I admit I cried, again. Always. I can’t seem to help it when this happens. This time, though, I was upset with myself, because I knew better. Hadn’t he had a tiny reaction to this stuff a few months ago? Why did I think this time would be any different? And I was upset with the whole twisted food system that makes things more difficult on families like ours. And I prayed that the antihistamine would do it’s work quickly as I chased our crazy boy around the house. Benedryl riles him up, causing him to rage, destructive and angry, as the medicine courses through his system. When the hives finally subsided, my parents rang the doorbell, and I let my mom hug me while I fought back tears. I was spent.

I want people without food allergies to know we didn’t choose this, and we aren’t trying to be unreasonable. We don’t want to inconvenience anyone, but we also don’t know what else to do. Food allergies are inconvenient. Figuring out how to navigate this food allergy world is hard. Scouring packages, stretching dollars, trying to better understand the inexplicable. Taking risks every time we eat out. Making sure we do our best to keep our kids safe and trying not to worry when they’re out of our care. It’s a lot to handle.

I’m thankful you’re in this with me, and that we have a tribe of folks who walk beside us doing their best to look out for us, who don’t regard food allergies as a nuisance, but try their best to make us feel normal. Sometimes, all I want is to feel normal again.

Love,
Scratch

2 thoughts on “On Food Allergies and Wanting to Feel Normal

  1. Oh Rachel I want to cry just reading this! I can't imagine what you go through on a daily basis to keep your kids safe. I know the feeling I get when one of my kids is sick and I do everything possible to keep the others away from them. It's like I'm in a constant flight-or-fight mode. I can only imagine it is 100 times worse for you, trying to keep them from unsafe foods. Do the doctors think they will outgrow any of this? I hope so.

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    1. Steph, I’m not sure I ever responded to this! The doctors are unsure whether they’ll grow out of it or not. Mia has a 20% chance of growing out of her peanut allergy. Emery’s chances are a little higher, meaning more kids outgrow dairy allergies than grow out of peanut allergies. For now, we wait and see. Thank you for your kind words – they mean a great deal to me!

      Like

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