On May 29, 2007 my 15 month old son, Ben, took a bite of dinner and within minutes I became an "allergy mom". I watched in horror as he broke out in red splotches all over his body and his face swelled so badly that I couldn't see his eyes. His cries started loud but grew hoarse and weaker by the second due to his throat slowly swelling shut. The life was draining from my little boy in front of my eyes and I was helpless. After rushing him to the hospital, I finally calmed down hours later as his color came back and the swelling decreased.
A week later we visited with an allergist who ran a litany of allergy tests on my baby's back which revealed he was allergic to: eggs, dairy, legumes (including peanuts), tree nuts, and soy. Peanuts and treenuts registered as anaphylactic reactions - meaning that his body would go into shock, swell up, and he would die within minutes without an epi-pen and immediate medical attention. We had been lucky his first reaction had been a slow one. We were issued our epi-pens, orders to avoid all of these foods, and wished good luck as we were ushered out of the office. It was overwhelming to navigate those first few months so carefully with such a small child, but we managed to get our information and plans together to prevent more reactions. Thankfully, most of the allergies were outgrown by the time he was three, but Ben is still allergic to peanuts and treenuts and requires his epi-pens to be with him at all times.
When I think about the term "allergy mom" I love and loathe it all at once. I am well aware the stigma that comes with my child. He is the kid that doesn't always get invited to parties because some parents are scared to have him over for fear of a reaction. He is the kid who gets ushered to a different area in the classroom to eat a pre-packaged rice krispie treat when someone brings in an amazing looking birthday treat and "forgot" to check the labels. He is the kid who worries a little each day that today might be the day no one wants to sit at his peanut-free table at lunch. I have to watch society exclude my child, sometimes unintentionally but sometimes because people just don't understand.
I am well aware of the stigma that comes with me. I have the label of being a demanding mother who may border on "helicopter mom". This stems from having to meet with the teacher at the start of the year to make sure the classroom is peanut/treenut free and his peanut free lunch table is ready. I do not do this to be a bother or to ruin the fun - I do it so my child won't die at school. I also do it so no one else's kid has to witness his reactions. I need to know when there are class parties and need parents to contact me about the food to be served. I don't do it to be bossy or because I want to push my dietary beliefs on anyone or because I think my kid is more special than anyone else's. These meetings, precautions, and extra involvement are all life-saving measures. I have heard that I should home school him because other kids deserve to eat peanut butter crackers in class. I have heard that this is all my fault because of something I did or didn't do during my pregnancy.
I struggle with ignoring the comments that people think their child's lunch choice is more important that my child's ability to live or that he shouldn't be in school with his friends because he isn't "normal". It's hard. Much of society seems to feel that because you cannot see his disability that it does not exist or that we are making it up. I wish many times that I could grocery shop without having to read the ingredients on everything we buy. I hate calling companies and getting bounced through four different departments just to find out if an unmarked food is going to be ok for Ben to eat. I feel awful having to ask people to not bring food to events or to bring something from a specific place to make sure that Ben will be safe. I wish that the world did not need to let me know about every scrap of food that comes near him at school, daycare, summer camp, sporting events, restaurants, birthday parties, and any other place on the face of the planet that has food.
But, for all of that, I am glad I am an "allergy mom" also. I understand more than ever what other people with disabilities go through. Everyone has a struggle and everyone has a battle, I never gave other's battles much thought before Ben's struggles began. I have learned to cook safely for my family and can whip out a soy/egg/dairy/peanut/treenut free birthday cake in no time. I have met amazing people who inspire me every day to try and make the world safe for kids like Ben. I've learned who my real friends are and so has Ben.
I have also learned that kids are resilient and far more accepting than most adults. Ben's classmates and friends look out for him nearly as much as I do. They ask their moms for peanut free lunches and safe birthday treats so Ben they can enjoy them with Ben. Then there's Ben. He's almost eight years old and he can tell you every candy he can or cannot eat. He can tell you where to look on foods for info and when to avoid them to be safe. He takes any exclusion in stride, often times assuring me that he is ok when he does get left out. He accepts his condition bravely, manages it with amazing maturity, and understands human nature more than most adults. He teaches me each day not to sweat the little things, which makes it easier to keep reading labels and calling companies.
In the end, I suppose "allergy mom" is best described as a balancing act to make sure I know what he will be around, what is in it, and making the best course of action to deal with it without going crazy. Sometimes its ruffling a few feathers over class parties, sometimes its overseeing events just to make sure no one is excluded over a snack, but it's never done to be a bother to anyone. I am part medic, part researcher, part counselor, and part educator. I cannot speak for everyone, but this "allergy mom" is merely looking for a little acceptance for a very smart little boy, who has a lot of great friends, funny personality, and infectious smile - who needs to avoid a couple of foods to keep him safe and alive.