The Silver Linings of Multiple Food Allergies

It is SO easy to wallow in despair when you're living with multiple life-threatening food allergies. There is a lot of anxiety that goes hand in hand with the vigilance required to keep a child safe from the dangerous crumbs lingering around every corner.  Every parent of a child with life-threatening food allergies has shed plenty of tears over their child's diagnosis before picking themselves back up, dusting off, and plowing forward like a superhero.  You start to focus on the silver linings of every food-allergy cloud which can keep the food allergy blues at bay for a while.  These are ours:

1)  WE EAT HEALTHIER

This one is probably at the top of every food-allergy family's list.  Filtering out unsafely processed foods is a must when you've got food allergies. Well before my son was even conceived, my husband and I had been pretty good about the foods that came into our home.  We didn't buy sodas or candy, and the foods we purchased were locally grown, fair trade, humanely raised, and organic whenever possible.  We were, however, much less strict when it came to eating out, and while we made extra efforts to regularly patronize local restaurants that did offer organic, local, ethical, and humane dining fare, we were willing to turn a blind eye when we went out for authentic Dim Sum, or street tacos, or whatever hot spot of the moment, and we wouldn't ask about where they sourced their proteins.

We still maintain the same standards for the food we eat at home, only now there's only a handful of safe pre-made foods in our freezer (and since we can't eat fast food, we cherish these 5 freezer foods like the precious things they are! They're the only way we can catch a break from cooking from scratch every day.)  Since my husband and I don't eat out at restaurants with my son, that means we don't eat out unless we've got child care, which means... we rarely eat out.  The restrictions at home and the reduction in dining out combine to make us healthier overall.  In fact, I've lost almost 20 pounds since my son's diagnosis and that's the only modification that's been made.

2) I'VE TRULY LEARNED HOW TO COOK AND BAKE

Before my son's diagnosis, I wasn't much of a cook.  I had the basics (pretty much whatever Alton Brown taught me while watching Good Eats) but many of the recipes in my arsenal featured canned soups, premade flavor mixes, boxed mixes, or convenience food shortcuts.  I was good at assembly.

All shortcuts are off the table with food allergies. Anything that is processed in a factory, or manufactured on a production line means I've got to make sure there's no chance of cross contamination with O's allergens.  Cooking everything from scratch used to seem intimidating, but now it really is much less stressful and it gives me back a little bit of control. 

I now know how every element tastes and how I might be able to replicate all our old favorites.  I'm no longer intimidated by cooking food the way our great grandparents did.   I've made entire Thanksgiving and Christmas dinners for eight from scratch (including ice cream!), become a pro with cassava and corn flours to replicate my Colombian mother's bunuelo, arepa, and empanada recipes... I even figured out how to make a killer nacho cheese sauce so we could have chips and dip on Superbowl Sunday.  Considering how much I resisted cooking in the past, I'm pretty proud of myself for coming this far and I'm grateful that I've been able to learn.

3) NON-FOOD TREATS!

When I was a kid, candy was the ultimate in reward.  To me, nothing said "great job" like a Three Musketeers bar (weird childhood side note: I used to eat all the chocolate off first and then roll the nougat fluff into a large ball that I'd eat like an apple.)  Safe candy can be hard to come by in the food allergy world, but there are still plenty of allergy friendly sweet treats if you do some homework and plan ahead.

What's ten times easier to find in stores and never spoils in your diaper bag? Non-food treats!  Did you know Hot Wheels are 99 cents at Target?  Do you know how long my two-and-a-half year old is willing to patiently wait through a shopping trip with the promise of a brand new Hot Wheels at the end?  A VERY LONG TIME.  We participated in the Teal Pumpkin Project last year and ran out of our non-food treats before the end of the night and unexpectedly had left over candy that's still sitting in our pantry getting stale.

I only recently realized that I associated food with reward when I was growing up - we went out to dinner to celebrate good report cards, picked up ice cream after acing tests, got a candy bar for working really hard on something.  Even as an adult, I struggle to break the habit of rewarding myself with a food treat when I've worked a long day or when I've been stressed out.  My kid still has fruit snacks (they're basically candy) and cookies more than I'd like him to in theory, but he doesn't consider those things rewards.

4) WE DON'T GET SICK AS OFTEN

It's scary to come down with a common virus when you have food allergies (and worse when you have asthma which frequently goes hand in hand with food allergies and eczema) because many allergic reactions can mimic viral symptoms.  When our kid gets sick, there's always a lot of anxiety as we're trying to decide if the sudden rash, or coughing, or runny nose, or upset stomach is viral, or the start of an allergic reaction that might require use of epinephrine.

Thankfully constant hand washing, surface wiping, hand and face wiping, and the phrase "hands out of your mouth!" keep him safe from both allergen exposure and disease carrying-germ exposure.  Hand washing is the best way to prevent the spread of disease and if everyone got into the habit of hand washing before and after eating, it would also help keep children with food allergies safe.

5) COMPASSION COMES EASY

Food allergies are an invisible illness most of the time.  Unless you know me personally, you don't know what we cope with on a daily basis to get through the day safe and sound.  I know how amazing it feels to have friends or family go out of their way to help you out, and I also know what it feels like to have a someone look at you with a smirk when you tell them your kid can't eat something because he has a food allergy.

I'm somewhat ashamed to admit it now, but there was a time when I thought I knew it all.  If someone had a Disabled Person Placard and seemed to strut into a store without a problem, or if someone used a motorized scooter at a store without a cast on their foot, or even if someone used a family restroom when they didn't have a baby, my judgey-judge meters would have gone through the roof.  Now, I know better.  I have no idea what other people are struggling with on a day to day basis or why they are grateful to be able to use the accommodations available to people with disabilities. No one benefits from my judgement or approval and I'm happy to make whatever accommodations we can to make someone else feel comfortable and included - and I'll do it with a smile.

6) WE HAVE BEEN BLESSED WITH INCREDIBLE FRIENDS AND FAMILY

We have a friend who has made her non-allergic children's birthday parties totally accessible to us.  She even buys her kid's cakes and cookies (including her daughters first smash cake) from the dedicated Top-8 allergen free bakery that we buy our treats from.  She reads the labels on every snack she puts out for the kids to make sure my son's allergens are not an ingredient, and she plans her children's birthday parties between lunch time and dinner so that food is not a major player in the fun. Even if O doesn't eat many of the snacks, it means that he can play with or near other kids who are eating snacks and not worry about what they've just been eating.  We never asked her to do this, and every time we remind her that she doesn't have to worry about us, but that we're grateful for her thoughtfulness.  Every time (it's now been 3 birthday parties) we show up and are just overwhelmed by how far she's been willing to go to make us feel included and at ease.  We are so blessed.

We moved into my parents' home while we remodeled and put our home on the market. We talked to them about making their house allergen-free.  It's been a few months in and things haven't been perfect, but they let me go through their refrigerator, freezer, and pantry and throw out the things that were not safe for O so I could replace them with a safe substitute and they let me have total control of the grocery shopping while we're living with them.  Having once eaten eggs, lentils, barley, wheat, peanut butter, and almond milk on the regular - they gave it all up so our shared home would be safer for all of us to relax in.   We are so blessed.

No matter how many random people downplay the seriousness of our son's food allergies, we know we've got incredible people in our circle of friends and family that take things as seriously as we do and we are so grateful for them.

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.

Mini Hoodlums

This morning as I was driving into work, I spotted three middle-school aged boys standing outside my friend's apartment complex.  They had backpacks on, so I assumed they were waiting for a bus or something to come pick them up. I had a bad feeling about three mischievous seeming boys climbing on and around the apartment complex signage at 6:50AM, so I proceeded with caution.

I watched them as I drove past them and glanced back at them in my side view mirror to see the three of them simultaneously raise their hands in the air and THROW SOMETHING AT MY CAR.

I continued driving and waited to see if the stuff they threw would actually reach my car.

It did.

Three thuds.

Thankfully there was no one on the road because I made a calm and conscious decision to pull a Mr. Wheeler, slam on my brakes, throw my car in reverse and go hauling back TO SCARE THE LIVING DAYLIGHTS OUT OF THOSE KIDS.

Which I'm pretty sure worked. 

My car is old.  I love my car, but a few pebbles hitting it on the side won't hurt much of anything... but this was about the principal of the thing.  1) KIDS.  WTF? and 2) PARENTS. DO YOU KNOW WHERE YOUR KIDS ARE?  THEY'RE THROWING THINGS AT CARS!

So anyway, I watched in my rear view mirror as the three boys went pale the moment I slammed on my brakes.  Then, as they saw my car switch into reverse, I watched as they RAN LIKE THE WIND back into the parking area of the apartment complex.

Like I said, my friend lives in that complex, so I'm fairly familiar with the area. Much to their dismay, I pulled in and followed the little suckers as they kept running around the corner.

I was already running late for work, so I didn't want to waste too much more time but I saw the direction in which they ran and spotted the area in which they were hiding.  So I rolled down my windows and stopped my car within earshot and pretended that I had been on my phone. I started talking obscenely loud:

"YES OFFICER, THREE CLEAN CUT BOYS WITH SHORT BLACK HAIR, BLACK SHORTS, TWO IN RED SHIRTS, ONE OF THEM IS WEARING A BALL CAP AND THE LAST BOY WAS WEARING AN ORANGE SHIRT... OK... SO YOU'LL SPEND ALL DAY TRYING TO FIND THEM? ... GREAT.... THEY'LL DO TIME IN JUVENILE HALL?... PERFECT.... THANK YOU POLICE OFFICER."

I looked in my rear view mirror as I drove away.  I think (maybe in my little heart, I just hoped) that one of those boys squatted behind a bush was crying. If so, mission accomplished.


A lesson to all the little childrenses of the universe: Don't frack with my car. Ever.