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Sunday, May 8, 2016

Food Allergy Awareness Week - React with Respect

Today marks the start of Food Allergy Awareness Week, and this year's focus is on encouraging individuals without food allergies to react with respect when someone tells them they have a food allergy.  Now, for most people I know, reacting to food allergies with respect and compassion seems like a no-brainer, but you only need to spend a few seconds in the comment section of any food allergy related post to get a taste of what kind of mean spirited things are said to or about people with food allergies.

With that in mind, my goal for this Food Allergy Awareness Week is to write about what it's like to raise a child with multiple life-threatening food allergies.  Hopefully one of my posts will reach someone who might think twice before saying or doing something inadvertently hurtful to someone with a food allergy or to the parent of a child with food allergies in the future.  I realize that people who say or do things like that often don't fully understand how serious food allergies can be and may not necessarily be acting from any sort of malicious place, but even with the best intentions, the wrong move may inadvertently put the lives of food-allergic people in danger.

My son is now two and a half and is allergic to five out of the "Top 8" allergens and more. I remember walking out of the hospital after my son's experience with anaphylaxis and seeing the outside world in a completely different light.  I was terrified.  It was like being asked to let my son grow up in a field of land mines - just one accidental step in the wrong direction could be disastrous

I knew how I could keep my child safe from "tricky people" from bullies, from car accidents, from drowning, but I had no idea how to keep my child safe from anaphylaxis.  This was galaxies beyond what I had imagined I needed to prepare my 14 month old son for.  As the diagnosis came in and we learned that wheat and egg had likely triggered his anaphylaxis, and that further testing showed he was also allergic to barley, rye, soy, tree nuts, peanuts, and coconut. I started to fall apart mentally. I knew peanut allergy could be deadly, but death by wheat seemed so outrageous.

I had wanted to be a relaxed parent who would give my child all the tools he needed to stay safe so I could let my kid explore the world and get his fingers dirty on his own.  Oh, he just ate a handful of dirt? Cool. Live and learn.  I wanted to continue traveling the world with him the way my husband and I did before he was born. I planned on us traveling overseas to meet my family, and to show him all my favorite places on the planet.  Planes will be out of our reach until he is old enough to tell us about the start of any allergic reactions. I wanted him to experience a world of foodie flavors with us and eat at all the new restaurants that pop up in our food-fanatical city.  We don't eat out with him anymore and we won't eat out with him again until there's a cure.

Before my son's anaphylaxis, my husband and I went out to dinner regularly and took him along with us.  When he was nursing, it wasn't a problem. As he started solids, we'd order items off the menu for him that I wouldn't normally cook at home and he'd happily chow down - a very well behaved baby in all kinds of restaurants. He'd usually come home with a mystery rash or his eczema would flare up days later.  At 8 months old, we went to a pizza place for a birthday party.  He didn't eat anything there, but wound up with a splotchy rash on his face from friends who had held him or kissed him after eating pizza. We didn't know about contact reactions then. We had no idea that these things could be food allergy symptoms and I had no understanding of the concept of cross contact.  We didn't put two and two together until after his diagnosis and then the guilt poured in.

I look back at photos of him at four months old, eczema on his face, hands wrapped in sleeves so he wouldn't scratch himself raw - why didn't I think to eliminate allergens earlier?  I was on an elimination diet while nursing him, but I didn't know how thorough my elimination needed to be until later. Besides, our pediatrician at the time, and his dermatologist were pretty positive his rashes were not food allergy related and that they were just a thing that happens to babies and that my elimination diet probably wouldn't help things clear up.  They were wrong. And it turns out, many physicians are sorely under-educated on the realities of food allergies.

As the months passed and we got better at doing the allergy thing, I'd settle into a zone and feel like I'd have control of things pretty well and that we had found our new normal. I felt like I didn't miss the old normal.  This was fine.  We could do this and everything would be awesome despite food allergies. Then something.  Something minor.  Something that most people don't even notice would snap me out of my positive attitude and remind me that our normal was not everyone else's normal and things would not be normal for a very long time... if ever.

I remember being at Costco and having a breakdown as I realized all the food that was in everyone's hands, being passed out, dropped on the floor, spilled on shopping carts, could kill my one year old. It was as if I was watching madness happen in slow motion, people frivolously playing with some kind of biological weapon.  Of course it wasn't a biological weapon to any of them, but all I could see was the threat all around me.  I watched parents feed their children free samples without even a second thought as to what was in them and I wondered if they were ever afraid of the food they put in their kid's mouths. Before food allergies, I had never given it a second thought.

I remember sitting at In-N-Out and watching a child younger than my son being fed french fries and a burger and becoming so sad that my son wouldn't experience In-N-Out. I wondered why that made me sad. I had never planned to feed my kid fast food and I rarely eat it myself, but crossing that off my son's "firsts" list put a cloud over my day.

I remember being at Gymboree where a friendly mother handed out cookies to all the excited children in the lobby while I scrambled to get my son's shoes on and run out of there before there were crumbs everywhere and my kid was asking me why he couldn't have a cookie too.

A fruit snack brand we trusted changed their ingredients to include wheat starch as the very last ingredient.  One more treat we crossed off our very short list.  A few weeks later, a freeze dried fruit company we had been purchasing from since O's first solids changed manufacturing facilities and now was processed in a plant that also processed wheat and other allergens.  Another snack off our list.

Little things.

As my son gets older, his allergies have not improved and we're getting him tested for three more foods that he's had unexpected reactions to in the last year.  We get closer and closer to the age where he's going to school and I'm terrified.  I have to trust another person to know his allergies. To keep him safe. To check labels. To consider ingredients in non-food things like glue, finger paints, play-dough, and water colors. Trust young children to not intentionally or unintentionally expose my son to the foods that will hurt him or could cost him his life. I can barely keep up, so I don't know how I'm supposed to let people who aren't completely obsessed with him do it.  We've talked about homeschooling... at least until he can self-administer his epinephrine, read labels himself, and say no to candy and cupcakes when they show up at school unexpectedly and everyone else is eating them. 

I'd make a terrible home school teacher.

I don't want my son to be the "special little snowflake" everyone assumes that food-allergy parents want their kids to be.  I want him to shovel food without a care down his adorable little gullet like the average kid and to never be singled out for something he can't eat or touch without the risk of dying. I want a cure in his lifetime.

Things have changed so drastically from the way I imagined parenthood, but I know more than ever that the best way to make the Universe laugh hysterically in your face is to have expectations and plans for your life.  I've also learned perspective.  Everyone is fighting a battle we don't see on the outside and for every parent that has it easier than me, there's a parent that has things twice as hard. We all do what we have to do.

We're getting better and better at managing the allergy thing, but we face challenges every day. I try not to complain much about our life with food allergies, but it was and still is a difficult adjustment that's worth every hurdle. This Food Allergy Awareness Week, I hope to share how much our every day lives have changed to keep our son safe and encourage everyone to react to food allergies with respect and compassion.

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