We’re at the park or some equally crowded location. You don’t see me yet. I have made zero effort to introduce myself to any other humans around me as I am too busy scanning the ever-busy children to check for chewing mouths or on-the-go snacks in chubby little hands. You see, every new interaction in a new place is cause for concern and high alert because I am one in 13. I am the one in 13 mamas of a food allergy warrior. My child’s life could be put at risk in just a matter of seconds if he were to come into contact with any of his anaphylactic allergens. This is a terrifying way to live, but we do because we have no choice.
All this to say, please don’t pity my pint-sized superhero. He is now of the age where he understands that he is just not like all the others and that can be such a tender topic for him some days. How do I field the question of, “Why am I not normal like all the other kids?” My answer is usually simply this: “It’s because you aren’t. You are extraordinary because you live with something that most others will never have to. You are the bravest and strongest kid I know!” Most days that will suffice, some days it doesn’t.
You see, being an allergy mom is like this: We’re always thinking of the dangers and risks posed to our child in the form of food. Food! The very thing that helps us sustain life is also the very thing that we fear most. Sometimes I still can’t believe this is the life we live; nonetheless, it is our life. We have chosen to embrace this life instead of dreading it. Whether it’s a restaurant, park or a friend’s house, my husband and I are always on high alert of the dangers that lurk. That being said, we try not to transfer these feelings of worry and anxiety to our son because we prefer to foster a sense of pride in who he is and how he can be an advocate for himself (and others). He loves sharing his journey with anyone who will listen, really!
Although we’re proud to live that allergy life (because of what it’s done for our family’s health), dang, some days are just downright HARD. After several scares and hospital visits, we rarely allow anyone else besides us and a handful of close friends to prepare food for our little warrior. I am a walking pantry anywhere I go. Friends have come to recognize our less than pretty black cooler that goes everywhere we do. This also makes attending special events a little tricky. Birthdays and potluck parties are where we face the biggest challenge of safety and separation. As much as we try to include him, his safety will always come first and the older he grows, the more he notices the differences in plates and inevitably feels left out.
Parents of non-allergy kiddos, please understand that it’s us and not you. When you invite us to your party and offer to make accommodations for allergies and we refuse, please know that we are truly grateful for the gesture. We are, I promise. We just remain terrified to trust anyone since his life has been threatened in the past with anaphylactic episodes. How does the saying go? “You want something done right, you’d better do it yourself.” In the case of one tiny morsel of an allergen accidentally sneaking into his food, you’d better bet your bottom dollar that we would rather slave away baking a whole batch of cupcakes in our safe kitchen just so that he can enjoy one of them with the rest of the kids at the party.
Since it takes a village, I’d love to share with you some alternatives to the language typically associated with new introductions to those who don’t know about our food allergy life. Living a life different from the majority of the population always somehow leaves an open door for those who like to share their opinions, whether constructive and kind or not. Trust me when I say we’ve heard it all from compassionate and concerned all the way to downright rude and hurtful. I’ve had someone tell me to my face that it was my fault that my son’s body is this way. No shortage of tears were fallen on that gem. Talk about mom guilt!
Compassionate phrases to try when meeting a food allergy strong family:
Instead of: “Oh, you poor thing!” — Try: “Oh wow! You must be so healthy!” This is not to say that all things he can’t eat are unhealthy, it’s to say that what he can eat is good for him and not a less-than-stellar second place. He is one of the most adventurous eaters I’ve ever known. Eating kale for breakfast never hurt anyone!
Instead of: “Wow! You can’t eat anything!” — Try: “Tell me about what you love to eat the most!” There’s nothing more that a food allergy family likes to talk about than food. Our son is no exception! He loves sharing recipes with anyone who listens and feels so appreciative of those who do give him that opportunity.
Instead of: “Oh, that’s so awful!” — Try: “Oh, wow! You are so strong!” But if I’m being completely honest, please just don’t say this one. Ever. It makes him feel poorly about himself and makes me, as his mother, feel even worse. Expensive? YES. Awful? It’s truly not. We just consider it a life adjustment. Our dream is for him to feel built up in love and strength, rather than feeling as though his life is less than the next person’s.
Instead of: “Whoa! That’s crazy! How do you even live without [insert food allergen here]?” — Try: “Is there an alternative that is safe?” He lives without these foods because he always has. He really has no idea what he is “missing out on” since he has never actually had it in the first place. This one usually leaves me trying to answer the “Why can’t I just be normal and eat everything like everyone else?” question and that’s just no fun for anyone involved. It’s heartbreaking and gut-wrenching to hear your little one think that he was made differently as a punishment.
If you’ve made it all the way through this ramble of mine, I would like to say a sincere THANK YOU with all the heart emojis. This parenting thing is tough enough as it is, and I know our little family appreciates as much love and support as the next. And please just know that if you see me when I am out and about with my tiny humans and I seem distracted, it’s because I probably am. I’m distracted and busy living that allergy life.