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When Others Can't See My Son's Food Allergies

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“He looks perfectly normal to me.”

The woman inspected my son, evaluating him for signs of his food allergies. She stared into his blue eyes. He stared back, trading his glance between his mother and this stranger. He was 3 or 4 at the time, tow-headed and already familiar with his well-learned phrase if anyone offered him food: “No, thank you. I have food allergies.”

“That’s because he is.” I cringe a little inside at the thought that some people are looking for outward evidence of my son’s life-threatening food allergies. If he’s displaying evidence, something has gone wrong. It’s hard to appreciate what we can’t see, but as an allergy parent, I work overtime and do my best to make certain there is nothing to see.

I don’t ever want to see my child turn blue as his blood pressure drops and his throat tissue swells. I don’t want to see the hives bubble unchecked over his entire body, scalp to toes. I don’t want to see my child go limp as I inject epinephrine and call 911 for a ride to the emergency room in case he experiences a rebound and we need to do a second injection. Many of us have been there and done that at least once. My son was diagnosed at 9 months old when he reacted to infant cereal. I can still remember standing in the ER as the nurse whisked him past everyone else into the back. And so began our education. As a parent, it’s your job to learn quickly and learn well.

As parents, we are successful and triumphant if you don’t see a thing. Seeing nothing is a victory.

One year at our annual allergist visit, my son’s doctor told me we handle allergies very well, that being proactive has had a positive impact on his quality of life.

I believe we all want to do the right thing; we just need the knowledge to make good decisions. So, my son would attend parties. I’d talk with the host beforehand to make certain his food “matched” the others’ as closely as possible. We’d bring allergy-friendly snacks for the entire group. We’d answer questions, demonstrate how to use epinephrine and talk about cross-contamination. While we wouldn’t hide his allergies, we did our best to approach the subject in a positive way, explaining we needed help to keep my son safe and healthy.

And people responded tenfold. If anyone found something free of my son’s numerous allergies, we’d find a package on the porch. Friends were triumphant, bringing treasures they’d found to share.

My son and I tuned into a program on the local radio station that was talking about food allergies. We listened intently, hoping perhaps there was something new to learn. My son was fairly quiet throughout, listening to other people’s experiences. When it finished, we talked. He said, “Mom, I’m glad you never treated me like I was in a bubble. I know what to do, and how to share what I need.”

Years ago, we began a neighborhood tradition at our home, “Gingerbread Night.” In the beginning, when we were few, I’d make allergy-friendly gingerbread houses from scratch for every child. As we grew larger and the entire table filled up and then some, we switched to gingerbread people. We’ve also added a modern twist with a few gingerbread zombies as well.

We provide the gingerbread people and frosting bags full of white icing. Guests provide gingerbread toppings that are allergy-friendly. Each year, there’s a hunt and a challenge to provide something new. Ingredient lists are carefully read. Processing is double-checked to make certain there is no cross-contamination. And happy chaos reigns with bowls of ingredients, ridiculous amounts of frosting, and group-judged and photographed cookies. And lots of milk to wash them all down. Everyone leaves with a basket of cookies and a wonderful memory of our holiday tradition. Neighbors stop me in the street in October to see if we’ve set a date for our can’t-be-missed event. Good friends have moved to Germany, and although they have no allergies, a box of our special gingerbread men will find their way across the ocean to be part of our special day.

While it was more difficult 15 years ago (my son’s first birthday cake was a two-pound block of cheddar cheese with a candle in it), time and repetition have made us all comfortable with our approach. We don’t ever let our guard down; we simply follow the plan. And after a while, people learned there was nothing to see, provided we followed those set rules. And after a while, they started to see a blue-eyed, blond-headed boy, and not “that kid with the allergies.”

The rules set in place all those years ago remain, but they are old hat by this time. We know what to do and how to do it. All of us.

And today, at 15 years old, my little boy stands at 6-foot-2 in his bare feet. His skin is clear, his eyes are beautifully blue, and his golden locks are still curly, albeit a bit darker these days. He is joyful, intelligent and already making plans to drive and thinking about how to deal with his allergies in college, how to budget and how to cook for himself. He has a plan.

And, yes, he has food allergies. He is anaphylactic to wheat, eggs, tree nuts, peanuts and barley. He carries epinephrine 24/7. He wears medical ID dog tags. He totes business cards that list his allergies and his emergency contacts. He is very much aware of his allergies and what they mean.

And we are very happy to say there’s nothing to see here, except a teenage boy much like any other young man on his way to becoming an adult.

Image via Thinkstock.

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Originally published: December 6, 2016
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