“Does it really matter what my kid eats next to your kid at school?”
“I didn’t think it mattered if we did a science experiment with egg.”
“I didn’t think they’d care if everyone else had ice cream and they couldn’t. Can’t they just have a little?”
“I know this person would die, but I’m thinking, ‘I never wanted to eat nuts more!'” Ricky Gervais on “The Tonight Show With Jimmy Fallon”
“You mean we can’t eat nuts in your house?”
When you’re a food allergy parent, lots of people — from fellow parents to teachers to comedy writers, all the way to your own family — offer their opinions about how you’re doing your job and often don’t hide that they think you’re overreacting, overanxious and overprotective of your kids and their allergies.
They lump us under the “helicopter parents,” label, parents who hover over our children’s every move, micromanaging their mere existence, implying we’re raising them to be adults who’ll be the subject of articles about kids who grow up to be adults who can’t cut it.
For years, when they were little, when they were still learning to advocate for themselves and still putting everything in their mouths, I did “hover,” watching everyone around us when we were out and about, watching every surface they touched, trying to wipe their hands before a hand that may have touched food that could send them into anaphylaxis reached their mouths. For years I had to imagine every scenario at school that could end with that dreaded call that my child had needed a shot of Epinephrine and been transported by ambulance to the hospital, or worse, that the school or my child hadn’t recognized the signs of anaphylaxis or couldn’t get to an Epinephrine injector quickly enough and my child hadn’t made it. That they had died, at school, helpless and without the right help. I had to imagine it so I could plan how to prevent it and work with the school to ensure their safety and their inclusion. Their survival depended both on my “hovering” and my ability to imagine worst-case scenarios and their contingencies.
This video actually inspired me to write this piece. While it showcases the pressures and decisions kids face and not their parents, it captures without question the decisions we “helicopter parents” have to prepare our children to face. It painfully and shockingly captures the line we as food allergy parents know our kids walk between life and death every day. Death — or at the very least, anaphylaxis, epinephrine and an ambulance ride to the ER — always lurk nearby. All day, every day, people managing food allergies face potentially life-or-death decisions from something as simple as food. That potential peril is really what hovers: the shadow waiting for us or our kids to forget to read an ingredient label; to eat food that might be cross-contaminated; to take our chances with a restaurant meal without doing our due diligence to ensure it’s safe; to forget an Epinephrine auto injector; or to decide it’s uncool, too much of a pain, or not a big deal to do any and all of the above.
For years I had to teach my kids to watch the world this way. To read every ingredient label. Twice. To never eat food that wasn’t from home. To never have their Epinephrine injectors more than arm’s length away. That a matter of seconds could be the difference between life and death.
But here’s the truth about food allergy parents and those with food allergies:
While other parents are teaching their kids to look both ways before they cross the street or to manage their own medical conditions or disabilities, we’re doing the same. We’re also teaching them how to stay safe and how to survive with food allergies in the real world. As food allergy parents, we also teach our kids incredible self-sufficiency, self-preservation, maturity, responsibility and survival skills.
My kids have completed “Allergy Boot Camp.” At 12 and 16, they know to read every label, by themselves — twice. They know that the safest food is food from home but if they get food elsewhere, they know to read labels, twice. They pack their own lunches, reading dozens of ingredients as they do so, and pack wet wipes to make sure their hands are clean. My oldest knows the labeling policies of countless companies and contacts them herself. My youngest may not always remember to turn in his homework (that’s a whole other article) but whether he’s heading to school or to ride bikes with friends, nine times out of 10, he remembers his Epinephrine auto injector and his inhaler. They take their Epinephrine and inhalers with them to every class at school. And they know how to speak up, respectfully and confidently, when a situation is unsafe. They are integral members of our meetings with school nurses, teachers and administrators as we advocate for their needs and map out their health plans each year.
Food allergy parents want more than you can imagine to let our kids eat out with friends and family. To share a holiday meal or birthday celebration without interrogating the host. To have our kid’s earned pizza or ice cream reward be a reward instead of a reminder of their disability. To never read an ingredient label or call a food company again. To breathe instead of holding our breath when our kids try new foods.
Do I wish they knew more? Sure. Do I wish they were better prepared for life on their own? Absolutely. I wish they could change a tire. Or change their oil. I wish my oldest could fight bugs on her own and that my youngest could remember to recycle his water bottles. I will never teach them everything. I didn’t know everything. Like most of us, I learned as I went. I’m still learning, in fact. And I can say, without hesitation, that I’ve learned the most as a food allergy parent.
I parent knowing that in addition to the risks every other child, teen, person assumes every day, my children will face unique pressures, unique choices. Decision after decision my kids will have to surmount peer pressure, their own yearning to fit in and the risk-taking urges of adolescence to make the right choices, choices that will keep them safe and alive. They will be at the mercy of those around them, at the mercy of their schools’ plans, training and execution of said plans — and of sheer circumstances — to survive their food allergies today, tomorrow and every day after.
I now know we “hover” for a stint because we have to. And then, like all parents, we pull back, take a huge breath and in an almost unparalleled leap of faith let them fly on their own.
I can’t guarantee they’ll always do the right thing. I can’t guarantee they’ll always be safe. I can’t guarantee that a bite or touch or breath of food won’t send them to the hospital, or worse, but I can be darn sure that thanks to my hovering when it mattered, they have a fighting chance. I don’t think any parent can really plan for, try for, or ask for more than that.
We want to hear your story. Become a Mighty contributor here.
Thinkstock image by mdphoto16