The bus my six-year-old 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 sirens anywhere in the area. It’s a fairly low-grade fear, however; I live in a city of 500,000 people, and sirens aren’t uncommon. I have some comfort in knowing my son carries his Epi-pen bag with him–after a couple of weeks of lectures from me, he remembers that he needs to have this bag, even if he brings nothing else home.
My son has food allergies to nuts, peanuts and dairy. I have been told by some that they are my fault. I cleaned too much. Breastfed wrong. I’ve been told my son is defective—that he should die. Over time there has been more support for kids with food allergies, but there are still so many who would make us stand alone–who’d make our kids stand alone.
The village wants to expel us.
At school, the teachers know how to use an Epi-pen. I don’t know, however, if the bus driver does. The instructions are clearly printed on it, 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’s lawyers who have convinced employers that it’s a liability issue to give a child an Epi-pen.
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 if unable to do it himself.
I hope his Epi-pens are still OK. We’ve been having frigid weather, and my son has to walk a half a mile home from his 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 walk.
My son gets off the bus. His first words to me are: “Mom, my stomach and chest hurt.”
His stomach hurting is always the first sign when he’s having a reaction.
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 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.
So my first words 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 six-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. 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 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. 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 after touching the Kit-Kat. Then it’s time for another safety PSA about another situation that I didn’t anticipate when I’ve had to tell my son all the things that he can’t do.
People who aren’t allergy moms will tell us that it’s my responsibility to teach him how to live among others who have no restrictions. I try, but I think that they have no idea what it’s like to give their child a list of things they should never do. I’ve told him never share food with other kids; never eat anything that another child has touched, even if it’s his own food. Don’t let kids touch your desk without washing their hands if they’ve been eating cheese.
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.”
My son thinks litter makes the world ugly. It kills me a little inside to know that, for his safety, I have to curtail his desire to make the world a cleaner place because touching the wrong thing could kill him.
This is what it’s like to be the mother of a child with a food allergy.
Heather Johnson says
“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.”
How is this helpful in cultivating a society in which people want to help others?
Food Retro says
I don’t know, Heather. I can’t promise that motherhood’s always rational in responses–I only promised that I’d be honest when I was writing this post. But I also know that litigation has bullied the good Samaritan response to death in our society. People now automatically respond by doing nothing for fear of what might happen because they do. I have read so many stories about people too afraid to give the auto-injector for whatever reason, and as a result, the child dies. That fills me with anguish, that people are more afraid and or calculate they are more LIKELY to be punished for the good that they might have been able to do, resulting in their inaction, than they are in the fear that the child might die if they do nothing.
Tell me, what should I do instead? Should we look into the eyes of a stranger who could have saved a child from a horrible death by suffocation and say they did the best they could, even when it’s a lie?
If someone could save your child from drowning in the pool and did nothing, what would you do?
If you are concerned about that but not that lawyers are making it so bus companies are making it against the rules for their drivers to save children’s lives by using the simple to use epi pen or similar device then I have to wonder about your priorities.
It is a real problem that lawyers are doing this. The bus companies say that their lawyers advised that they can’t take on the liability. Any food allergy parent is going to respond by at the very least thinking about the liability the bus company will have if a child dies due to their policy.
The policy could easily cause a fatality and is very misguided.
Oh, Anne. Thanks so much for sharing. It is so good for us to hear what it’s like for parents of kids with allergies. I couldn’t imagine living with that kind of fear and paranoia with every little ache. Wondering what could happen… Keep doing what you’re doing!! Hugs!!!
Heather are you an allergy mom? Your response tells me you are not because the fear that we feel daily is all I think about while reading this article. She read my mind many times over. We are hear to defend the world against a litigious society. We are hear to keep our child from what would be deadly poison to them.
Amazing! You have managed to write down and express what many of us are living, and I thank you for that. It is very hard for those who don’t have to think about food and it affecting their child in a negative way to imagine what it’s like to live with food always on the brain. I am constantly talking to my kids about food. If my child decides she wants to try a new activity it doesn’t end with signing her up and meeting instructors, it goes into talking to everyone involved about if they know how to use an EpiPen? Food allowed and not allowed in club, talking to my daughter about what to eat, what not to eat, washing hands after, moving if she sees food that is not allowed, making sure she carries her EpiPens and Benadryl on her person.
I could go on and on, but I will simply end with thank you. Thank you for letting others glimpse into our lives and for saying it so well and hopefully creating some empathy and understanding.
Aneta Alaei says
Great read Anne. I cant imagine what life must be like but you did a wonderful job explaining what goes through your mind. Also, you are a better woman than I because I would hunt people down and suffocate them slowly if they stood by and did nothing while my child died 🙁
I am a 47 year old woman who has been anaphylactic to tree nuts my entire life. There were no epipens when I was a child and Benadryl was not OTC. That being said, kudos to my mother who never asked the school or anyone else to accommodate my allergy. If I went to a birthday party and the cake had nuts, I didn’t eat it. I knew what to choose to eat in the cafeteria and what to avoid. Our rule was that if the person who made it was not on the premises, and I couldn’t speak to that person directly, I didn’t eat it. I wore a locket around my neck that had a Benadryl in it. My point is one can only control themselves. Mothers can’t control children, schools cannot control the environment. To ask is a false sense of security.
As a teacher, I encountered many allergy students who didn’t have a clue how to protect themselves and how to identify potential problems. It seems we have a whole generation of allergy families who expect other to sanitize their enviroments for their kids.
Food Retro says
A fair point. I rely on my son to advocate and defend himself when I’m not around. I think it’s funny, though, that people could call child protective services on me for letting my six year old walk down our (suburban) street to the park by himself, but in cases of food allergies (and a much larger and more certain risk of death), he is expected to fend for himself. The world is a backwards place.