What it means to be a food allergy mom

This essay is part of Motherwell’s new Parenting and Food column.

By Lauren Weiss
@foodallergywebsite

Some events are so traumatic that life is divided into before and after. For me, this happened twice—first with the loss of my husband and next with my young daughter’s diagnosis of life-threatening food allergies.

I always thought the before-and-after life changes would come from having two children, from becoming a mother. But the first happened when I was 26 weeks pregnant and found my young husband dead from a brutal asthma attack on the parquet floor of our Manhattan apartment. And even harder in some ways, was learning that our, my, little girl had asthma too. Along with an extremely severe peanut allergy and allergies to all legumes. My life as a mother has been defined mostly by this unexpected grief and irrational fear for my daughter’s life. I cannot disconnect the two, no matter how much my brain tries.

After her diagnosis in kindergarten, I grappled with the concept that if one life could end, another could too. In my mind and heart, these two events will always be connected. Sara is not just some allergic kid, she is predisposed. She and her father are bound together by genetics and inheritance. But what if you are the best mother you can be and it’s still not enough to save your child? What if one mistake on the part of a waiter, relative, or even yourself could be the fatal bite?

Welcome to the life of a food allergy mom.

The relationship a peanut allergy mom has with her kid is all at once loving, nurturing, empathetic, exhausting, fearful, anxious, and depressing. It often seems both hopeless and hopeful at the same time. There is the push and pull with everyone else who feeds her, eats with her, and cares for her. Everyone is either someone who could kill her or someone who could make her a safe meal. I know how hard it is, I’ve been both.

At least it’s only when she eats, a well-meaning friend once said. Wow, what a relief to learn that it’s only going to be an issue for mealtime or those endless trips to the pantry for snacks. For approximately three hours of her waking day. Fifteen years—or 16,433 hours—later, this is hardly a comfort.

When your child has a food allergy, it’s hardly only a problem just when she eats. It’s every ancillary activity that surrounds eating. It’s the meal planning, supermarket shopping, label reading, cuisine and restaurant choices, menu selection, all the phone calls and emails with friends and family about these things. It’s the ubiquitous drama with the people who don’t get it, the cooking at home, calling other parents, principals, restaurants and caterers. Trips to the ER, visits to specialists, going to CVS to renew epipens after using them. School trips, playdates, sleepovers, birthday parties, football tailgates, vacations in Disney World. It’s everything you do because everything includes food. Even if it doesn’t, trust me, it does.

Food allergies are an invisible disability, fully recognized by the Americans with Disabilities Act but hidden most of the time behind the seemingly healthy facade of my fit and laidback daughter. It’s hard to imagine that someone so full of life can be just one forkful away from anaphylaxis. While others may see a healthy person, an allergy mom sees danger lurking six steps ahead. We always have to be on our game, constantly vigilant. It’s exhausting.

When Sara was diagnosed, her peanut allergy was off the charts. Literally off the charts. Sara’s peanut IgE score was recorded as >100. When I asked the doctor why there wasn’t a precise number, she said the computer stops counting at 100. So not knowing if her peanut score was 101 or 5,000, we set out to navigate our brave, new world.

I was always a nervous wreck and for good reason. In first grade, her girl scout leader listened to me as I explained how to use an Epipen, and then put my daughter in her car, right next to her own daughter who proceeded to eat a PBJ sandwich. There was the elementary school principal who told me in the meanest way possible that peanuts were not going to be excluded from her classroom lunch because Sara had to get used to living in “the big, peanut-eating world.” My mother-in-law casually brushed peanut shells off the back seat of her car before offering Sara a ride. When Sara went to sleepaway camp for the first time at age nine, my concerns were laser-focused on eating. While other parents were advocating for their kids’ swim level or landing the lead in the play, all I really cared about was the food. Not whether it was good or not, but whether it was safe.

There was that time she passed out in 8th-grade gym class and I arrived at the school just in time to get on the ambulance with her. Sara fluttered in and out of consciousness on the ambulance, the wailing sirens helping to navigate a massive New England Nor’easter. All because the substitute nurse thought the Epipen would hurt her (it won’t) and the paramedics were convinced it was an asthma attack (it wasn’t). When she finally got epinephrine via IV at the hospital, her vital signs returned within minutes. I remember how it crossed my mind that she might die in front of my eyes. After this episode Sara never forgot her Epipen again and I never hesitated to tell her to use it.

When it came time for college, I left her with eight Epipens and enough Benadryl to knock out her entire dorm floor. Not even one week later, I got the dreaded call. “Mom, I can’t breathe,” Sara sobbed over the phone. I had just dropped her off at her freshman dorm at her dream school in Boulder, CO, a grand 1,781 miles away from our home near Boston, MA. She was at her very first college football game on the very first weekend of college. All she knows is it was something in her nachos, or maybe because of all the peanuts in the stadium.

I was as crushed as the peanut shells stuck inside the treads of her new black & gold Nikes. As a mom I empathize with how unfair life can be for kids with food allergies. Classes hadn’t even started yet, and here she missed the big game. She also missed sorority rush, which started the next morning before she was even released from the hospital. Food allergies were reminding her that she is not like everyone else.

If there is any silver lining, it’s that these experiences have taught us much about safety and relationships. Each time she had an allergic reaction, we learned together to recognize the signs of anaphylaxis, not to second guess ourselves when it came time to use the Epipen, who to trust with food, and the importance of always having her meds with her. We control what we can and prepare for what we cannot.

Sara and I have always enjoyed a close bond. But living with food allergies has brought us even closer together in unimaginable ways. We had a blast last summer when I taught her to cook before she moved into her off-campus college apartment. She sends me pictures of omelets and avocado toast and salads. I think these are attempts to reassure her Jewish mother that she is eating and healthy and that I shouldn’t worry. But of course I still do. In many ways, she is the one who takes care of me.

As she turns 20, our relationship continues to be interdependent. She calls me from the grocery store to clarify food labels and I remind her to refill her inhalers. I still jump every time the phone rings, but I’m proud to be the person she calls. I have learned so much from my daughter about strength, resilience, perseverance and resolve. I will continue to try to maintain my sanity as I strive to protect her—which is really what being a mother is all about, in any circumstances.

AUTHOR UPDATE: This essay was written before the pandemic. Parts of it seem tone-deaf now, like when I liberally listed all the activities that spiked my anxiety. I long for the days when my daughter was at school, a concert, a football game, or a ski resort. Reading it now makes me realize that due to her severe food allergies, we were already thinking twice about food prepared outside the home, and have been wiping down airline seats for years before it was featured in the New York Times style section. Sara survived the lockdown in Boulder, CO, had her best semester ever despite remote learning, and even got a part-time summer job at a sushi restaurant. All this to say she knows how to take care of herself and I can stop worrying a little. Maybe.

Lauren Weiss is a freelance writer, a college essay advisor, and founder of the Food Allergy Website. She resides in the quaint seaside town of Marblehead, MA with her family and two cavachons.

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