I’m Not A Crazy Mother: Food Allergies, Anaphylaxis, and Advocating for Your Child

Less than 24 hours ago, I drew upon a lifetime of living with anaphylactic food allergies when I injected my little boy with epinephrine.  24 hours prior to that, we made a trip to the ER after he broke out in hives shortly after drinking some soy milk.  Soy wasn’t new to him.  It had been in his diet constantly since birth, as well as the other “top 7” food allergens.  They sent us home with an Epi-pen Jr., and told us what to look for in the event we needed to use it; all information that has been firmly rooted in my brain for the purpose of protecting myself ever since I was old enough to understand it.

But it was the moment 24 hours ago, when the hives were spreading out of his ears and across his face, combined with the itching in his mouth and nose, and his desperate “Mommy, help me?” that had me reaching for the epinephrine and sent us on our second emergency room visit in 36 hours, this time after cow’s milk.

I have six years of experience helping people cope with anxiety, even OCD, that arises as a result of living with anaphylactic allergies.  Prior to this, it has been my own experience living with these allergies that I have drawn upon in connecting with families going through this journey.  I knew that my mom was called “overprotective” because of the way she advocated for me at school, where I was bullied by my first grade teacher who didn’t believe I really had a problem. Bullying is probably not the right word for it – I probably ought to call it abuse.  The same teacher who took my safe cupcake out of my lunchbox and ate it right in front me, throwing the rest of the contents of my lunch box in the trash; the same teacher who barricaded the door and wouldn’t let me leave the classroom when I tried to go to the school office because they were making peanut butter bird feeders, and there was peanut butter smeared across my desk and chair, my skin erupting into hives and my throat beginning to close.  In response to removing me from that classroom, in insisting that I have epinephrine with me, and checking labels in school freezers, she was “the crazy mom.”  I never saw her as such, but others did.

Thus, I join the ranks of alleged “crazy moms” who cultivate a sense of separateness from mainstream culture; not out of preference but out of necessity.  And I have a letter for you:

Dear Caregivers,

You’re not crazy, even though much of the world will tell you that you are.  There will be people in your family who tell you that you’re a helicopter parent, overprotective.  That you need to step back and “let kids be kids,” that your child just “needs to toughen up.”  Your life looks different from that of the “typical American family,” because your family can’t consume food indiscriminately without regard to ingredients or cross-contamination.  Going to a birthday party is either an enormous task leaving you depleted of energy, or impossible, depending on the severity and type of allergies your child has.  There aren’t many places you can go in which food is not present, or the main attraction: movie theaters, festivals, even churches and places of worship.  You might come to a point in which you wonder why people have to make everything about food.  Can we not attend church without there being food everywhere? Evidently not.  You will grieve the life you had before, in which you could eat without worry and participate in social occasions without fear.  I say all of this not to be a downer, not to be pessimistic, but to tell you that I hear you, I affirm you, and I feel the same way.

You are the champions of your child’s health and wellbeing.  You are an advocate for a child who needs help learning how to protect themselves.  You are showing them what it means to be assertive, how to read labels, how to act calmly but efficiently in an emergency situation.  You are strong, you are capable, and you, my friends, are definitely not crazy.

Sincerely,

An Allergic Mom of an Allergic Child

P.S. The only time I was ever annoyed with my mom was when she made me carry my epinephrine in a fanny pack.  I couldn’t have a crossbody purse? Oh well.  I lived to tell the tale.

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