My son is 6, and he is allergic to dairy, nuts and peanuts.
Working as an editor and being in the allergy mom communities I am in, I've watched debates rage across several sites over food allergies, and how bans in schools infringe on kids' rights to eat a peanut butter sandwich. It's pretty awful.
As you can probably imagine, it's all over the spectrum, from the people who don't understand, to the people who probably do understand, but are vociferous in claiming they don't care. And there are many people who believe we should take our kids out of the schools entirely -- isolate the allergy kids and assume the burden of their education ourselves. Or they say that it is our fault that bans should exist; that we need to teach our kids better, and let the onus of the child's safety rely on the child.
It is good to finally see some voices of support from those who are beginning to understand, but there are still so many who would make us stand alone -- many who make our kids stand alone. It feels as though the village wants to expel us.
So I thought perhaps I would share what an allergy mom deals with every day. This story happened last month.
The bus my son rides finally pulls up to where I am waiting; it is 10 minutes late.
Every time it is late, I worry that there has been an incident, especially when I have heard emergency vehicle sirens anywhere in the area. It's a fairly low-grade fear. I live in a city of 500,000 people, after all, and I hear sirens all the time. I know that my son carries his Epi-pen bag with him-after a stressed couple of weeks of lectures from me, he remembers that he needs to have his bag on him at all times, even if he brings nothing else home.
I know at school all the teachers know how to use an Epi-pen. I don't know, however, if the bus driver does. I don't worry that the bus driver wouldn't know how, because the instructions are clearly printed on the Epi-pen. But I don't know if he'd be willing to give my son the injection. I don't know if he's even allowed to. You see, there are an awful lot of lawyers who have convinced employers that it's a liability issue to give a child an Epi-pen. Long ago, I made a promise to myself that if my son died because someone stood by, I would try to sue the pants off of anybody responsible for watching my son suffocate and die without at least trying to help.
I try not to think about that.
I also try not to think about whether the other children on the bus would recognize if my son was in distress and would try to inform the bus driver, even, if my son was unable to do it himself.
I hope his Epi-pens are still OK. We've been having some frigid weather of temperatures -20C and more, but my son has to walk up to 1km home from a bus stop. Policy. His Epi-pens are in a case, in a bag, in another bag in his school bag. I hope that's enough insulation to protect them for the 20-minute walk.
Should be. I hope.
My son gets off the bus. His very first words to me are: "Mom, my stomach and chest hurt."
I freeze in panic for three seconds before my brain goes into crisis gear. People have always told me I'm amazing in a crisis. I never tell them that I always panic for three seconds first. The truth is that I'm generally a pragmatic person, and I know on a deep, instinctive level that if I don't take control, I can't fix the problem. I don't like the way crisis feels. So I automatically reach out to take control. That's all that there is to my amazing crisis-handling skills: I hate feeling out of control.
But I do know that his stomach hurting is always the first sign that he's having a reaction.
So the first words out of my mouth are: "Are you having a reaction?" If the answer is yes, then I know exactly what I must do. I will rip open his bag for his Epi-pens. I have my cell phone. I will inject him and then call 9-1-1.
But the answer is "I don't think so." I have to fish for more information, because that's how 6-year-old boys work; they'll never think to volunteer up anything. And really, at some level, I get this. He's a kid. I'm the adult here, and it's my job to protect him because kids are emotionally, physically, and mentally immature.
So I start launching into the questions that will help me determine if he's been exposed to an allergen.
Does your throat hurt? Were kids on the bus eating near you? Did you touch anything that you shouldn't have touched?
My son tells me then that he picked something up at school. He thought it was a piece of plastic, and was planning to throw it in the recycling bin, but it turned out to be a chunk of Kit-Kat, instead. The chocolate melted all over his fingers, and he washed it off.
My stomach sinks a little bit. Did you touch your face or your clothes before you washed your hands? Did you taste it? Did you smell it? He says no. Did you wash your hands really well? He says yes, but I am skeptical.
"When did this happen?," I ask next. Because the when is usually the most damning. If it happened first thing this morning, it's unlikely to be the culprit right now. Unfortunately, the answer is that it happened right before he got on the bus, which gave him just enough time to start having a reaction if he perhaps touched his face or stuck his fingers in his mouth while on the bus, as sometimes he's wont to do. If he didn't wash well enough. If he even is having a reaction.
If, if, if.
We have been walking the 1km distance home as I have been grilling him, on hyper-alert the entire time and encouraging him to double-time his usual dawdling stroll. I ask him every so often about his stomach and his throat. His throat feels fine, but his stomach still feels terrible.
I ask him to show me where it hurts. It's midway. It's low enough that it could be that he has to go to the bathroom, but high enough that it still could be just his stomach. He's always had the runs after accidental exposure to dairy, too. I ask him if he has to go to the bathroom, because he always has to go to the bathroom with some urgency by the time we get home.
Of course, the answer again is yes. I relax a fraction. It could be that he's just got to go. But then again, he's never complained about his chest hurting from needing to go to the bathroom. I don't like the timing of the Kit-Kat either. And usually when he's got to go, he just says so.
We aren't out of the woods yet, but so far, nothing has happened, and the likelihood is less with every growing moment.
In the background of my thoughts, I am thinking about whether an Epi-pen is capable of stabbing through snow pants. I know it can go through jeans, but perhaps snow pants and jeans together would be too much. I won't risk it; even though it is -12C outside, I will have to strip his snow pants to inject him on the icy sidewalk, and then try to get him covered up again, keeping him warm against shock. At least I would be easily visible to an ambulance from the sidewalk, though there's an ice-crusted snowbank about 20 inches tall and six feet wide between us and the roadway that we would have to deal with it.
I can carry him if I need to. He's a skinny boy; only about 42 pounds. And it's only about 6 feet. I'm sure the paramedics would help me. They would reach.
After the longest 20 minute walk ever, we reach the house. I push my son into the bathroom. And I wait.
The toilet flushes.
"How is your stomach?" I ask.
"A lot better, Mom!" he calls.
I run down the list again. Throat? Belly? Lungs? Everything comes back OK.
I hug my son and tell him he did the right thing by washing his hands right away when he touched the Kit-Kat. And then it's time for another safety PSA from Mommy, another situation that I didn't anticipate when I've had to tell my son about all the things that he can't do.
People who aren't food allergy moms will tell us that it's my responsibility to teach him how to live among others who have no restrictions. I think that they have no idea what it's like to have to give their child a laundry-list of things you should never do. Sure, I've told him to never share food with other kids; never eat anything that another child has touched, even if it's his own food. Don't let them touch your desk without washing their hands if they've been eating cheese, I've told him.
But I've also had to think up all the other heartbreaking things that they probably wouldn't think of in my place. Like to stow anything that touches a food allergen in a plastic bag until I can clean it. To never let anyone kiss his face, especially on his lips. Even if it's a family member.
One day he might want to kiss someone, and I don't know how we're going to deal with that safely.
But for now, I look into his eyes and tell him, "Listen, if you see garbage on the ground and you want to pick it up, use a paper towel to pick it up safely. Or better yet, just leave it alone."
You see, one of my son's quirks is that he thinks litter makes the world ugly, and it kills me a little inside to know that, for his safety, I have to teach him curtail his desire to make the world a bit of a cleaner place.
And this is what it's like to be the mother of a child with a food allergy.
This post ran originally on FoodRetro.com