Brett and I took the red eye flight last February from Phoenix to Dulles and arrived at 6 am.

He slept on the flight.

Me, not so much.

For him to be comfortable enough to sleep, it means discomfort for me as he sprawls his body across both seats, pinning me down, I am unable to move for hours.

Finally off the plane, eyes still blurry as they adjust to the air and lighting. We had to find our next gate; it would be a shuttle, and then a long walk. As we made our way through the terminal, we passed a food court.

Within a few seconds, “Mom, something smells horrible,  it’s bothering my throat! Get me out of here!”

I look to my left and see fast food workers behind trays, food sizzling away. A Chinese buffet. Peanut oil is sifting through the air. I can’t tell the difference, but Brett’s body sure can…

We quickly run away. I pull him aside when we are safe from fumes, and pull out a Benadryl Fastmelt.

6 am? Really? We have to worry about Chinese Food cooking at 6 am?

I just want some coffee…

This is the reality of parenting a child with a peanut allergy.

I have so many stories like this. How to even begin?

There was the time we went to an annual game dinner with my husband’s co-workers, where we had to flee the scene after my son, running around outside with some other kids, had a nose-to-air assault. We discovered the culprit. Wild turkey in the smoker, cooked in, you guessed it: peanut oil.

When Brett was a little shorter, a few years ago, counter-height, we were checking out at a natural foods store in town and he began to sneeze. And sneeze. And sneeze. Multiply this 20x or so, the stores owner and I look at him in alarm. What is going on? I pull him out the front door, give him a Benadryl, and have him stand outside while I finish paying for our “nut-free” crackers and supplies. I look down, a peanut cookie, wrapped in a light cling-wrap, sat nose-height directly in front of him on the counter.

Our favorite store, a birding store, has open bird seed bins, with peanut dust flying everywhere. It used to be a treat to go there; now we don’t go in there at all. Now I worry even if I go there myself, what if the product I purchase for him has peanut dust on it?  And then there’s the local garden store with a large pet bird. We loved to visit just to see him, until we were there watching as a staff member fed peanuts to the bird; shells and dust littering the floors. I haven’t been back.

We are in Beaver Creek, Colorado with my family. Before going out to dinner, I check the website of each potential restaurant, and start the inquisition. Do you use peanut oil? How many menu-items have peanuts or nuts? Do the people working there sound like they know what they are doing and will take care of my son’s meal?  After dinner someone mentions going to get ice cream cones. They all go. We have to search for 15 minutes to find a convenience store, to find a pint of ice cream with an allergy-friendly label, because we can’t go to Ice Cream Parlors. Cross-contamination. Our family looks at us kind of funny. It was bad enough it took three tries to agree on a suitable restaurant. Now this? They wonder, are we being just a little over-the-top with our caution?

During intermission at a local high school play with friends, baked goods are spread out on tables for purchase. So tempting. My son’s friend hurries over and picks out two cookies. There aren’t nuts in it, she says, Brett do you want one? I’m sure they are fine!

My son stiffens.

Then runs to the hallway, away from all the food.

There’s nothing there for him.

Even an innocent little cookie, baked probably with love by one of the high school kids parents, and probably without nuts, is off limits. Who made it? What are the ingredients? Is the chocolate they use made in the same facility as other nuts? Do they have nuts in their kitchen? I found a squished old allergy-friendly chocolate bar in my purse, left over from Halloween, and that had to suffice until the play was over. If only they sold something in a package. With a label. Without nuts. Without being produced in a facility with nuts, he could have something to eat.

Quite a few of my friends have suggested I consider writing about what it’s like to deal with this peanut allergy on an ongoing basis. My response so far has been, no thanks. I don’t think I could keep up on the news and still stay a positive happy person.

I’ll keep it health-focused. That makes me happy.

But food allergies are on the mind this week.

One reason, is that recent news has been particularly horrifying. When I open Facebook, where most of my food allergy-related sources live and communicate allergy news and happenings, the photo of a beautiful, smiling 13-year old girl, Natalie Giori, is repeatedly shared.

Natalie died from anaphylaxis in late July. Her parents this past week spoke out about the incident. She died because she ate a Rice Krispie treat at a camp cookout. She thought it was ok. It didn’t look like it contained nuts. But it did.

Her Benadryl didn’t work, nor the 3 epi-pens administered.

You can read about it here..

As a parent of a child with food allergies, I have to keep up with the news. But often, it’s hard. If I miss out on important new developments, and learnings from fatal, heartbreaking, too-close-to-home stories like the one above, I will miss out on making myself a smarter, more-prepared parent.

But if I read about this too much? It just depresses the heck out of me.

As I’m contemplating Natalie last week, my son starts 3rd grade.

At the beginning of each new school year, food-allergy parents need to head straight to the school nurse. We discuss our emergency action plan. We sign new forms and have our doctors sign as well. We give the school a recent photo of our child so they can post the photos on their emergency forms in all the common school rooms. We get new epi-pens so the school has valid ones for the year and double-check the box of Benadryl is up-to-date.  We meet the new teacher ahead of time to make sure he is aware of the allergy and knows to have two epi-pens follow Brett wherever he goes. I’m lucky; our elementary school is fantastic and has the best policies on allergies a parent could ever want. The nurse, Mandy, a gem. Thankfully, that’s the one place I am confident I can leave him.

Our school also sends out an informational form to parents about food allergies, the severity of them, and outlines procedures used at the school to ensure nut-free rooms and zones exist to keep students safe.  Although nuts are not banned, the policy cautions parents about sending kids with nut products in their school lunch.

I know this is a pain for other parents.

Every school year, in the news, I hear about some group of parents, in another community around the U.S. fighting the school about nut-free policies. They don’t understand why they need to change what their kids eat because of other people’s issues. Can’t these allergic kids just stay away from nuts?

They can, yes, to a certain point.

We do, as parents, whatever we can to make sure our kids avoid the allergen. In the stories I mention earlier you can see that. But sometimes these kids come face-to-face with the allergen and it’s unavoidable, sort of like second-hand smoke, or worse, using another recent news topic, like a chemical weapon.

Severe food allergies are not the same as regular outdoor allergies: It’s not sneezing and wheezing from dust or pets or plants. Exposure can cause anaphylaxis. Where someone’s throat closes up and they are not able to breathe. Like my son in the airport, or the game dinner, coming face-to-face with sizzling peanut oil. He is just walking down the hall, or just running around, and then bang, it happens!

Epi-pens are powerful and save lives; but in some cases, like with Natalie, who did actually consume the peanut, the success rate is not 100%.

At a school, nut residue could be on a doorknob, or a table, or on playground equipment, or just on a friends hand, who touches my son, and it transfers. And that’s why it isn’t just something we as parents can control on our own.

And why many of us, parent and child, navigating life with food allergies every day have so much anxiety.

Every year I get better in my role of being a food allergy parent.

The difficult part though involves finding the right balance. Teaching the child to advocate for themselves as they get older, and also ensuring their safety in an emergency. I get loads of unsolicited advice from family, acquaintances, and some friends. Who judge my actions as a parent, when they have no idea what kinds of dilemmas we face each day.

Do you really have to read that label 15 times, or ask the server if there are nuts in a hot dog?

Nobody puts nuts in hot dogs.

Well, yes, someone might.

But the label doesn’t say “produced in the facility with nuts” it must be ok, right?

Why do you need to call the company to ask?

Because it’s not a law; companies do not have to label when there are nuts in the facility, or even when foods are processed on the same equipment. Cross-contamination is a big deal.

And surely he can learn to speak up for himself and carry his own medicine.

I don’t know. Would you put a couple of huge needles in an 8-year olds backpack, and expect him to save himself by stabbing himself in the leg if his throat started to close up from contact with an allergen?

Other kids go to camps all summer, why does Brett only attend a few?

Most camps around here have no policies for nut-allergies and no training on epi-pens. Would you leave your kid somewhere when you can’t ensure their safety?

And, you haven’t left him at a birthday party or playdate by himself?

Not yet…but I’m working towards it!

Aren’t you just being a little too hovering, a little too over-protective?

He needs to learn independence.

I don’t know.

It’s not that I don’t want to. It’s just leaving my child with someone else is a big responsibility.

For me and for the other parent.

Food allergies are certainly not the only childhood problem. All parents have issues with their children. My son’s friend Ashley has Type 1 diabetes, and her mom Lynn and I are often the ones staying at after-school activities and summer camps, long after other parents are free to leave. Lynn explained to me one day in detail what she needs to do to keep her daughter safe, on an hourly basis, sometimes more, and my jaw dropped in disbelief.

But food allergies are invisible. And they are misunderstood. There is no apparent reason why my child has one; he certainly didn’t ask for one, and neither did the other millions of people who are living with this problem.

What I’d like to accomplish by writing my thoughts here?

As you send your kids back to school you will inevitably encounter kids in similar circumstances, and their parents trying to figure out how to balance their safety and independence, even while the two goals seem to contradict each other.

Less judgement and unsolicited advice.

Patience. Support.

Understanding.

Food allergies are complicated.

While they share the same name as seasonal allergies,

The realities, if we aren’t careful, are much, much, more than a simple sneeze.

Do you have anyone with food allergies or intolerance in your life? Or any difference, that makes it a little tougher as a parent? Would love to hear your stories and strategies…

Please consider sharing to promote better understanding of Food Allergies, thank you!