In the spirit of Mother’s Day, two of our food allergy mavens at Allergy Amulet wrote letters to their mom and daughter, respectively, about their food allergy journeys together. Abi Barnes, Allergy Amulet’s CEO and Co-Founder, has lived with food allergies her entire life. Meg Nohe, Allergy Amulet’s Director of Strategic Development, has a daughter with food allergies. We hope you enjoy.

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Dear Mom,

I sometimes look back at my childhood and think, This is why I have a dog. By Darwin’s logic, I should never have made it.

You raised the textbook definition of “bubble girl”: severe asthma, eczema, and the only kid I remember growing up with food allergies. And you did it all before food allergy labeling laws existed, at a time when most folks had never encountered a food-allergic child, and when food allergy organizations and advocacy groups were nonexistent. Pizza joints didn’t know what to make of a child who was allergic to tomato sauce. I like to think you’re the reason “white pizza” is now a thing. Dad and Grandma were particularly dumbfounded: How is the daughter of a long line of Mainers allergic to lobster?

I remember sitting in Nurse Losey’s office in elementary school during recess, hooked up to my nebulizer, watching classmates walk into the infirmary with bruises and scrapes on their knees seeking antiseptic and a bandage. They would glance over at me in wonder, as I breathed in clouds of white smoke from a long tube connected to a noisy white box. Nurse Losey, with her kind eyes and motherly demeanor, would smile at me and carefully close the infirmary curtains around me, shielding me from stares.

Needless to say, there were days when I felt different.

But you worked hard to create a cocoon of normalcy around me. On friends' birthdays and school events, you’d arrive with white pizza and plain vanilla cupcakes so that I didn’t feel left out. You’d adeptly deflect attention away from my special accommodations. Most kids probably didn’t even know that I was always a heartbeat away from the hospital. I also don’t remember ever being teased or taunted as a kid for my food allergies or asthma, although I’m sure it happened from time to time. You also encouraged me to talk openly about my food allergies and asthma—it was nothing to be embarrassed about, you’d say.

You were my life raft as a child. You and your fanny pack full of antihistamines, epinephrine, and inhalers. I can only imagine the stress and fear that accompanied my fragile condition. The terror that must have filled your bones when I would say those four words: “My mouth feels itchy.”

You’re a rare breed, Mom. Always have been. Anyone who knows you would say the same. You’re uncannily selfless and kind; a wellspring of creativity and optimism. And you’re fiercely genuine—a quality I constantly strive to emulate. To say that I am fortunate to have you as a mother would be an understatement. I wouldn’t have made it this far without you.   

Once a life raft, now an anchor. Thank you for first keeping me afloat, and now ever grounded. With love. Happy Mother’s Day.

Abi

P.S. Dad, I know you helped out too, but it’s not your day… ;)

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My sweet E,

I’ve often been told that a mother should always trust her instincts—that motherly intuition goes beyond scientific explanation.

A few months after you were born, I remember having this gut feeling that something was not quite right when it came to food—you had countless stomach issues, unexplained discomfort, and trouble with weight gain. We tried removing dairy and soy from your diet, administering medication for your reflux, and nothing worked. At one year old, we found out that you were allergic to peanuts and tree nuts.

And it all made sense.

I went through a flood of different emotions after your diagnosis: first fear for your safety and social adjustment as you grew older, and then anxiety over what I didn’t yet understand about managing food allergies. There was also guilt. Guilt that I spent a year not knowing about your allergies. Was it something I caused when you were in utero? Could we have prevented this? Did I fail you by not identifying the symptoms?

At the time, no one in our family had food allergies. After blaming myself for a few months, I accepted the fact that I didn’t know what I didn’t know, and decided to put my energy and efforts into ­­­­­­­­­being your advocate and cheerleader. At nights when you went to bed I researched food allergies and watched educational seminars. I trained our “tribe” to ensure you would always be safe when I wasn’t around. I quit my job in medical device branding to throw all my time and efforts into figuring out my “place” in the world of food allergy advocacy and education. Was part of this guilt-driven? A little. But mostly, I realized that there are SO MANY children like you deeply affected by food allergies, and I wanted to do anything I could to help your voices be heard.

Fast forward to 2017—we’ve been a food allergy family for a few years and you’re THRIVING! You still have nut allergies, but you’ve outgrown a couple of them, and we’ve completed oral immunotherapy for several others. You’ve learned to advocate some for yourself, and talk openly about your allergies without fear or embarrassment. And I’m SO PROUD!

I’m also thankful that we’re walking this journey together in 2017 versus decades previous. FDA food allergen labeling has come so far; and thanks to living in the digital era, we’ve been able to join a support network that we might not have had otherwise. Then there’s technology (like the Allergy Amulet), immunotherapies to help manage food allergies, and lots of food allergy innovation going on today. And I’m grateful.

Who knows, ten years from now maybe you’ll be desensitized to all of your food allergies, or maybe you’ll have outgrown them! It’s hard to even imagine that this phase of life may become a distant memory.

While this path is not one I would have chosen for you, I’m so blessed to walk it alongside you. And that’s where I’ll be. Love you always.

Mom

 

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