Here’s what parents of students at a Volusia County, Florida elementary school did in March 2011 when they were told that their kids would have to make this accommodation to ensure the safety of a first grader with a peanut allergy: they protested. They literally picketed, handed out flyers and called the media.

The uproar affected me deeply because a similar controversy brewed in my district several years ago – and it involved my son.

Before Daniel’s first day of kindergarten, I developed a plan with school administrators to keep him safe from his allergens. Although we made every effort to keep the impact on other students to a minimum, some parents saw the restrictions on certain foods in the classroom as an infringement on their rights. In fact, one mom was so miffed that she rallied a group of parents and they protested at several local school-board meetings, inviting the media.

School administrators went to battle for me, and in the end, not a single word of my son’s plan was changed.

Since that time, I have worked with thousands of allergy parents navigating the school system, trying to help others “get” food allergies. Here’s what I’ve found works – and what doesn’t.

Tell the truth. Never exaggerate. A significant portion of people still don’t believe that food allergies are real. When we say things like, “If she touches it, she will die,” it lessens our credibility. If the truth is, “If she ingests even a trace amount of this food, she could die without proper treatment,” then say that. The truth is frightening enough.

Be meticulous with your words and language. When we use analogies like the “loaded gun,” we may be written off as anxious or crazy. Most people simply cannot compare a sip of milk or a bite of a cookie to a loaded gun. It doesn’t matter if we’re right. It matters that they can hear us.

Share a story. I tried for years to explain food allergies to my sisters. But it wasn’t until I shared Sabrina Shannon’s story through her radio documentary “A Nutty Tale” that they truly understood. One sister called me immediately afterwards and said, “Oh my God. So this is what you are dealing with.”

Sabrina died from an allergic reaction to a trace amount of dairy on French fries served in her school cafeteria. There is no argument with this story. And every parent on some level can relate to the fear of losing a child.

Next page: On the same page with school officials

“Did you ask them about the nuts?” I ask in what I consider a disarming tone, but which may, in retrospect, sound a bit bitchy.

“Ya, I asked them and it’s fine,” he responds in a not-so reassuring tone that tells me he’s lying.

I want to cry. I want to kill him. I want a divorce.

The little one is sitting there emptying all the salt and pepper into the sugar dispenser, and I’m mindful not to implode in front of him or the rest of the members of the tennis club who are quietly enjoying their coffee shop grub. Nonetheless, I proceed to calmly emasculate this unflappable husband of mine with whom I share this anaphylactic toddler whose life-threatening allergies are somehow entirely my responsibility, all day, every day.

OK, so that was two years ago, or rather Year One of our family’s allergic life. Things have changed dramatically since then. Honey would never be so negligent today and I would never be so on his back. In fairness, we’ve both come a long way in the 2 1/2 years since Lucas, our first born, was diagnosed with multiple food allergies (peanuts, tree nuts, egg and unknown). My husband has learned the basics by rote, and I have become advocate mom, 100 per cent dedicated to making our world as safe as humanly possible for the Luke Man and his now 11-month-old brother Judah (whose allergies have yet to be determined).

In fact, I worry so much, research so heavily and educate so continuously that Honey needn’t lose a wink of sleep concerning himself, much less sacrifice a minute of downtime digging for new insights and resources. Thank god for me, right?

Wrong. Honey has never thanked me – not in any way – for turning my life inside out so Lucas can be safe and live a normal existence. For all the heart-wrenching exchanges with parents, teachers, relatives and friends in an ongoing effort to make them understand what’s at stake. For all the groups I’ve joined, books I’ve bought and people I’ve connected with to keep us in the loop. For all the literature I continue to read, synthesize, write and disseminate .…

Don’t get me wrong, I love my man. Truly. He’s a warm, loving, hands-on father and a nurturing lover – kind, honest and generous to a fault. I’ve also always been magnetically drawn to his boyishness – the way he strives for speed over efficiency and brushes over detail like a drunk reading Shakespeare. It’s a perfect juxtaposition to my slow and meticulous ways and a lovely balance to the weight of the world I carry on my shoulders.

Still, despite my trust in Honey’s ability to manage the situation when I’m not around, I find myself resenting his unburdened disposition and the ease in which he entirely defers to me on everything to do with Lucas’s allergies. And let’s face it, it’s hard enough to get that lovin’ feeling when you’re busy juggling your home, children and career. Add a child’s multiple food allergies to the mix and your libido is doubly endangered.

OK, so part of this rant is just natural marital crap. Really, when was the last time any husband thanked his wife for the daily sacrifices she makes for the family? How often does any sleep-deprived, working mom pull out the garters for a late-night romp? Even in the best of times, we moms of the wee are grabbing a bi-weekly quickie and nodding off to sleep feeling gratified that we’ve achieved the impossible, even if we didn’t achieve ….

But back to our allergic life. I’m not saying that a simple “thank you” is going to drop me to my knees (especially since I’ve actually asked him to acknowledge my efforts, which of course ruins the sentiment entirely). And, as I do believe each of us should harness our particular strengths in the relationship, there’s not much chance I’d be willing to let Honey take the lead on the whole allergy affair. But how liberating it would be to hear the words, “Sweetheart, I found this great new website .…” or “Baby, I was thinking we should check out this new support group I’ve been hearing about.”

Just show me we’re in this together, allow me a moment to exhale and, Honey, I’m yours for the taking, garters and all.
Write to Sam at: editor@allergicliving.com

Conversation with Diane, before Mike arrives home:

How did you discover you had allergies?

Growing up in Florida, I’d never eaten much fish. So about 10 years ago, we were sitting in a Red Lobster. I ask Mike, “What’s clam chowder?” And he looks at me like, “Are you serious?”

So I try it. I take a spoonful, and right away my throat starts feeling funny. I take another spoonful, and I can’t swallow. Mike says, “You might be allergic.” And my throat is getting tighter and tighter. We head straight to the doctor, and the doctor says, “I don’t want you near shellfish.”

Now, if I even touch shellfish, I’ll react. One day, I went to get my nails done, and the man doing them just touched my hand, and immediately it started swelling up. I asked him what he’d eaten for lunch: shrimp.

What advice would you give to the allergic?

Walk with your EpiPen. That’s what I didn’t do at first. But I have two EpiPens and now I carry them with me all the time.

How did you find out Raven had allergies?

It was after an Argos game, when Raven was about 3. The girls and I went with the team to [a restaurant]. Raven is sitting on her dad’s lap – he’d ordered a pasta dish with shrimp – and she takes a noodle. Now, you know your kid. She got really quiet, and is looking a bit flushed.

I ask, “Are you OK?” She nods her head, but I can tell something’s not right. And then, everything just clicks.

I ask her, “Baby, does your throat feel funny?” And she nods, and the tears start streaming down her face.

What happened next?

We went right to the hospital. Mike’s driving on the sidewalk, Raven’s face is swelling up – there’s a police car following us now, sirens going. We run into Emerg, and she gets her needle.

Until you see someone else have a reaction, you have no idea. The next day, we saw an allergy specialist, and found out she’s allergic to all kinds of fish – everything, even fish sticks.

What talks have you had with Raven about her allergies?

She knows to avoid tuna, to sit on the opposite side of the room if someone has it in their lunch. She carries her EpiPen all the time, and knows how to use it.

I think about how things might change when she’s a teenager – the whole pressure of being accepted. But Raven’s her own person [laughs]. Of the three kids, she’s the best one to have them.

When did Raven last have a reaction?

Just a few weeks ago [November 2005], after a football game, the girls and I were in the wives’ lounge and Raven grabbed a couple of carrot sticks off the food table. There were tuna sandwiches on the table – not touching, a few feet away. She began to react: throat closing up, eyes getting red.

We rushed her home, gave her some Benadryl, and she was fine. But, I mean, that’s your child. The biggest fear I have is for her, not me.

Mike sits down to talk:

How have allergies affected your life?

As for my own allergies, from late May to mid-June, my nose is just a fixture [laughs]. It doesn’t work at all. But the main way allergies affect me, of course, is through my wife and child. I do love seafood, but I just eat it on the road. The adjustments I make are small compared to what the girls have to live with.

What’s been the worst experience?

When Diane was pregnant with Rachel. We were staying with relatives in Florida and Diane’s asthma was really bothering her. She was using her puffer, but still really struggling to breathe.

It kept getting worse and worse, and she’s just gasping for air. Well, the nearest hospital is 15 or 20 minutes away. We got there in time, but it was the most fear I’ve ever had. She was six months pregnant. Everything just comes into focus at moments like that.

How do you cope with having loved ones with allergies?

I try not to let it spook me. Diane and Raven are diligent in carrying their EpiPens, and that reassures me.

I also believe in bringing attention to allergies as a health issue. There are some causes that have more glamour, more cachet, but allergies can be every bit as fatal as the more well-known causes.

What can people do?

We need to think of ways to make life more liveable for those with serious allergies. At the Rogers Centre [in Toronto], I’m working on creating a peanut-free zone for football games.

I also think we need to challenge those who are in power to acknowledge the seriousness of allergies and asthma. We need to encourage the people who are working in the allergy fields, the ones who are dedicating their lives to it. We need to give them greater support.

First published in Allergic Living magazine.
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