Discover more from Nicci’s Notes
Funny How Impossible Eventually Becomes Mundane
We handle what the universe gives us
She starts coughing a half-hour after lunch. Maybe it’s just a cough, I think (hope, pray) at first. As if pretending nothing’s wrong has ever worked before.
She’s sitting on my lap, bouncing and babbling, when she starts up. It always begins like this, like a tickle in her throat that she hasn’t yet learned to scratch. But then it just keeps going. Coughing and coughing and coughing, and all of a sudden the dress I planned on wearing to work is covered in the chunks of chicken soup she was picking off the tray of her high chair 30 minutes ago.
I take a deep breath and let it out. I thought we were past this.
By the time I’ve sprayed us both off in the shower, put a fresh onesie and diaper on her and a new, less-flattering dress on myself, and wiped the disinfectant off the leather couch, Janet is knocking on the door. I put down the cardboard cylinder I’m inspecting and welcome her in with a tight smile.
My daughter doesn’t want me to leave. But then, she never wants me to leave. That’s why I quit my full-time job instead of going back when she was four months old. Now she’s almost a year, and these four hours twice a week are the only moments I have to be an adult, a professional, someone outside of this lonely little dyad we’ve formed.
Janet sits cross-legged on the living room floor and opens her bag to reveal the colorful balls and blocks she’s brought. I pantomime to her, “Go for a walk if she starts crying,” and, “Call me if anything at all happens,” and, “She will probably fall asleep in the stroller,” and somehow Janet understands it all. My eyes well with my gratitude for her and the crippling helplessness that has become my constant companion.
I want to say goodbye, to squeeze her and kiss her, but I know if she sees me leave she’ll start to cry, and crying leads to coughing, and coughing leads to puking, and I can’t miss another day of work, and so I just slip quietly out the front door and let the tears splatter on the pavement as I walk to my car.
“Corn,” I say later that night, after another round of puking—this time after she’d fallen asleep for the night—another spray in the shower, a new outfit, fresh sheets. Even as I speak, my ears strain. Over the last six weeks, they’ve been trained to hear the faintest hint of a cough from the other side of the house.
My husband turns to me and raises his eyebrows.
“I think it’s corn,” I repeat. “I think she’s allergic to corn.”
Food diaries have been useless. After she started solids, all the “first foods” we got at the store had so many ingredients it was impossible to isolate a single one that was causing her problems. But today, I think I figured it out. She was okay for a few days, and then this morning I gave her something new: veggie puffs.
“Look,” I say, grabbing the cylindrical container from the counter. “The first ingredient is corn meal.”
We cut the corn-based products out of her diet. The days and weeks stretch, and she gets better.
At our next GI appointment, the doctor offers a possible diagnosis: eosinophilic esophagitis. It’s an allergic attack, in response to certain foods (which differ by person), on the tube that carries food from the throat down to the stomach. It’s a lifelong condition, but it can be controlled with diet.
We spend the next few months avoiding corn. We buy more organic foods, more whole foods. Fewer ingredients. And she seems fine.
Until she doesn’t.
The coughing comes back first, and for a while I am able to convince myself it’s just a cold coming on. But then she pukes one night as she’s falling asleep and my veins run cold. Not this again. She’s been fine for months. What changed?
“Oh, my God,” my husband says after we’ve gotten her back down. He stops scrolling and hands me the iPad. On it is a list that takes up the entire screen. Dextrose, it reads. Maltodextrin. Xanthan Gum, Corn Syrup, Citric Acid.
“What is this?”
“A list of all the ingredients that are derived from corn.”
My heart might explode right here in my chest. I stand on shaky legs and go to the cabinet where we keep the snacks. There isn’t a single one that’s free of all of these ingredients. “The doctor did say some people are reactive to derivatives, too,” my husband says.
My world shrinks to a pinprick. While we thought we’d been doing the right thing, we’ve been slowly poisoning our child.
She coughs on the way home from preschool the next day and comes home covered in puke. I clean her and I hold her and I stroke her back. She cries, and I cry, and we settle down to watch a movie.
Or she does, anyway. I hammer on my keyboard furiously, posting on the Facebook group for corn allergies, combing through posts, researching what people with this allergy actually eat. “I make my own yogurt from a corn-free starter,” one says. “My child can only eat one brand of single-source oats,” says another. “I grind my own flour,” says a third.
“This one lady grinds her own flour!” my husband yells from the next room. Seems I’m not the only one researching.
We find recipes. We spend $400 at Whole Foods, buying ingredients but also pre-made foods that are definitely safe, like peanut butter made with only peanuts and rice cakes with only rice as an ingredient (though the Corn people tell us, and our experience will later confirm, there’s never a guarantee) because we need something we can feed our child today. We order a flour mill. We spend the next two days in a desperate haze of prepping and cooking and hoping that the things we bought will be edible to her and also not make her sick.
And slowly, over more months and weeks, we settle. We grind flour and make bread on the weekends. We make fruit pops and cheese crackers and banana chips and spend more time in the kitchen than anyone who doesn’t work in one. For birthday parties, we make ice cream and cupcakes and bring homemade pizza so she doesn’t have to be the only kid who doesn’t get to participate. I get pretty good at cake decorating.
We come to realize how much of our social life revolves around food. How little thought most people put into making sure to include options for kids with allergies. How impossible it would be to do this for our child even if they tried. How difficult vacations are when you can’t eat at a restaurant.
We learn the safe brands of convenience food so she can have the occasional treat and we can have the occasional break, but mostly we make everything that goes into her mouth.
“I don’t know how you do all this,” my friend, Lisa, says one day some years later. Kiddo is in second grade by now, and I’m standing in the kitchen straining yogurt while the fruit strips bake in the oven.
I shrug. What choice do we have? “You get used to it.” It’s the honest truth when I say, “It doesn’t even bother me anymore.”
Later that year we take kiddo for a followup and find she’s having silent symptoms. My world tilts once again. All the work we’ve been putting in for all these years, and it’s not enough. Either she’s more sensitive to corn than we thought, or there’s something else she’s reacting to.
At the thought of trying to piece it all together again, my fists tighten and my throat closes up.
“There’s a medication we offer,” the doctor says, “if an elimination diet seems too overwhelming.”
Overwhelming doesn’t begin to describe it. But with the doctor’s understanding words, the panic recedes. For seven years, every time we thought things were better, we were proven wrong. Now, for the first time, there is something we can do to be sure our baby is safe. We don’t have to do anything right now; we can just give her a safe medication and she will be better. I almost collapse with the relief.
Nearly five years pass without an episode, and our ears never stop pricking when a child coughs in the middle of the night. But, over time, another new normal settles over us—one where we find orange oral syringes scattered all over the house and develop a relationship with our local compounding pharmacy. We follow the research foundation and contribute to keep the work going.
We transition from asking to answering questions in the online groups. We form relationships with other parents struggling to understand and live with their child’s chronic illness, offering whatever resources we can to pull them out of the hole of desperation and not knowing, that familiar impossible-to-escape chasm with its slick, vertical walls, and onto level ground, into a place where they feel supported and like the world isn’t on the brink of shattering.
Our daughter turned twelve a couple of weeks ago, and going back to this time in our lives still fills my chest with the same despair. There is no greater terror than knowing something is wrong with your baby and not knowing what it is or how to fix it, especially when food is the cause. Add to that the general uselessness of her pediatrician at the time and the underreaction from the other people in our lives (*shrug* “Sometimes kids just puke.”), and we felt so irredeemably lost.
Last year, a new treatment graduated out of clinical trials, and now that she’s old enough she’s going to transition away from her steroidal medication and onto this monoclonal treatment which has 150 of her doctor’s patients in complete remission. She still avoids some foods, but in reality she could eat whatever she wants and not get sick from it. After so many years of restriction, none of us quite know what to do with that freedom.
You know that saying about we only get as much as we are able to handle in life? I think it’s the other way around. We get what we get, and we figure out a way to handle it. And everyone around us is doing the same. And sometimes the only thing we can do is help each other—and ourselves—get to the point where what once seemed impossible becomes mundane.