Food Allergy Awareness Week is May 11-17. I decided to honor it by writing my first public post about being a food-allergy mom. Wendy Sue Swanson, MD, aka @SeattleMamaDoc, is generously hosting it on her blog, where I hope it will reach many, many people.
I’d love to hear what you think — about being a parent, living with food allergies, handling a challenging health situation, whatever this inspires. Please join me in the comments here or on the SeattleMamaDoc blog.
Once a year, I give a high-stakes presentation in front of a single audience member: my son’s teacher. I have 20 minutes to teach her how to save his life.
I need to explain the science of food allergy, list all of his many allergens, accurately describe the symptoms of anaphylactic shock, instill an appropriate sense of urgency and responsibility with one or two frightening stories, but also build her confidence so she does not tune out or give up prematurely.
I must unpack the medicine kit and explain each item, list the circumstances in which the kit should leave the classroom, explain why a child having an allergic reaction should never be left alone, demonstrate the use of the emergency medication, and let her get a feel for the epinephrine injector by sticking it in a grapefruit, which approximates the real target: the fleshy part of a child’s thigh.
I will close with a few words about social inclusion. If we have time, or if I sense an opening or need, I will talk about bullying, both overt and subtle, since that is becoming more pressing as my son gets older and children get meaner.
During each stage of my presentation I stay alert to my audience’s reaction: a flicker of annoyance, a blank look, a nervous glance away from the awful or the new. I gauge what is needed – a smile, a joke, an illustrative story, or a grim warning. Sometimes it has been necessary to use what my children call my “I have a gun” smile or to bring my lawyer husband to the next meeting so we are all clear on everyone’s rights and responsibilities.
But today it went well. She shared that her own child has had food allergy issues. Not true anaphylaxis, but enough to allow me to simply underline, not explain, the importance of allergen avoidance. I think my shoulders dropped about an inch. We are in this together.
She also said “of course” in just the right way when I mention how nice it would be to not deliberately and knowingly serve party food that could kill my son. “Thank you,” I replied, with a catch in my voice, as I think about how many people react with indifference or even vitriol to this request.
I like to think I have gotten pretty good at this after so many years of training relatives, babysitters, and teachers. I inhabit my role. I relive our own sick moment of realization that our son could die if we did not take immediate action. Six times. I assure people that they will know anaphylaxis when they see it and that there is no downside to administering the epinephrine.
At the 20-minute mark we punch in each other’s cell phone numbers. We shake hands and say goodbye. I walk out of the building and, every time, I burst into tears. How did I do? The reviews won’t come in until the end of the year when the med kit is returned to me, having never been used.
I always hesitate, when reading about another mother’s Big Reveal moment, to chime in with a “I know how this feels.” I worry that they—you—will feel I’ve missed the critical point, that this is NOT a universal thing, it IS different from the worries everyone tells you everyone has, the world MUST listen to you about this exception. Because I also have “me, too” experience in the benign dismissal that is other parents’ entirely unequal commiseration. I do, though, know how something very much like this feels, and you’ve captured it so well.
Though I don’t have an “I have a gun” smile. Instead I have what my son once described as, “that tone that turns what you’re saying into a magic spell, and suddenly you’re eight feet tall.”
Susannah Fox says
That’s the biggest compliment of all, Leslie, to say that I somehow captured something universal in what is a very specific experience. Thank you!!!
And I can 100% imagine that tone of voice. Yikes, is all I can say 🙂
Warrior mommas. Charming ones. Much love.
Susannah Fox says
Much love back atcha 🙂
Susannah Fox says
I got an email overnight from a fellow food-allergy mom (we’re part of a Yahoo group for our region) and it made me realize something about the importance of writing this down:
Acknowledging the fact that I burst into tears every time helped me to realize that I need to prepare emotionally for each training session. I don’t want it ever to become rote. I want it to be fresh for every babysitter, teacher, etc. But that takes a toll on me.
I got that insight just from writing it (months ago, btw). I wasn’t sure that I was ever going to post it publicly. Now I’m getting the second level of insight, by sharing what I wrote and seeing it through other people’s eyes. Thanks, everyone, for being those eyes!
Additionally, I found an example of a very good, professionally-produced education packet for newly-diagnosed food allergy patients and their families. One skim of it and you’ll see why it’s so tough to cover everything I need to cover in that 20 minutes:
Part 1: Pertinent Food Allergy Education in a Pediatric Ambulatory Care Setting for the Newly Diagnosed Patient PDF
Part 2: Pertinent Food Allergy Education in a Pediatric Ambulatory Care Setting with a Focus on Anaphylaxis PDF
(Thanks to Ves Dimov, MD, aka @Allergy, who pointed out these articles on his blog, Allergy Notes)
Susannah Fox says
Further thoughts on this first experience of mine as a first-person health blogger: it’s totally different from being on the sidelines. Duh, right? But it’s a profound shift and one I want to take some time to notice and absorb.
Kathleen Hoffman just posted an insightful list of 7 reasons why patients blog. All I can say as a newbie is “Yes. All of those.”