The Mommy Vortex: Becoming a Food Allergy Mom

On Labor Day 2009, the day before my son was to start Kindergarten, he asked me if he could eat a cashew that was sitting in a bowl of mixed nuts at my parents’ house where we were celebrating the end of summer. He had eaten almonds and walnuts before, so I didn’t hesitate to give him the cashew. Within thirty seconds, he vomited the nut onto the tile floor at my feet, and began breathing heavily. Within minutes, his left eye was swollen shut, and he was constantly clearing his throat in an effort to breathe.

I had no idea what was wrong. In retrospect, I should have known – I should have been better educated about food allergies, but I was not. My sister thought quickly and gave my son Benadryl, which, thanks to his earlier vomiting, helped immensely. An agonizing trip to the allergist – complete with hysterical tears during the skin tests – confirmed that my son was severely allergic to tree nuts and peanuts, and mildly allergic to strawberries and pineapple. How could this be? None of my or my husband’s family members had food allergies; I had never even thought to test my son. I suddenly felt like I was thrown into the deep end of the pool with no life preserver. I literally had no idea what to do next.

Learning to be a mom of a child with a food allergy is difficult. Your world suddenly changes in an instant, and you become the food police overnight.

In those first few days and weeks that followed, I had to educate myself about everything from food labels to cross-contamination to how to effectively use an Epi-Pen. I learned about blood levels, “food challenge” tests, and airborne allergies. I then had to educate my family and friends, and had to fill out endless reams of paperwork to make sure my son could stay safe in his school, at camp, etc., where an Epi-Pen would always need to be present.

I was always scared.

Then there came the food battles. Halloween was (and continues to be) a food allergy nightmare. Birthday parties present a host of landmines that can rarely be avoided. Try explaining to a five year old that they can’t have the cake and ice cream that other kids are eating. Even with food allergies becoming more prevalent (and thereby increasing awareness), it always seemed to me that my son was the only one who couldn’t eat a certain food or take home a goody bag. My son did remember having the anaphylaxis reaction when he ate the cashew, but even so, it was difficult for him to eat his “safe snack” in front of other kids eating whatever they wanted.

We stayed out of restaurants for months, until I was comfortable enough asking the right questions and advocating for my son’s safety. Some places were accommodating; others were battlegrounds. Visiting friends and family even became difficult, as those not familiar with food allergies could not understand why having a bowl of mixed nuts or sweets from the local bakery on the table was dangerous for him. Others would get offended if we didn’t allow him to eat something – especially if my husband and I refused the food ourselves in solidarity and support. There were many times my son’s allergy felt like torture for all of us. But it was my job – my privilege – to keep him safe at all costs. And so we soldiered on.

Now, at almost nine years old, he is his own advocate, and is very careful about what he eats. He reads his own food labels, and although he does get upset when he can’t have something, he is much better equipped to understand the dangers of eating a food that could be compromised. Most other parents have been incredibly accommodating and kind – even though I bring my own “safe snacks” wherever I go.

And, yes, there have been a few moms who have made life more difficult by questioning whether the allergy is “really that bad,” and asking whether my son “can just have a little” of some potentially contaminated food. I’ve even had other parents completely dismiss the allergy, comparing it to life threatening diseases like cancer, and then scoffing that, in comparison, the food allergy “really isn’t that bad.”

But the thing is, my son could die. I know it’s not like having cancer, but still, one bite of the wrong food, with delayed treatment, and he could die. I try not to be dramatic about it, yet the facts are what they are.

And after hearing about Cameron Fitzpatrick, a 19 year old college student in Plymouth, MA that tragically died on March 8th after biting into a cookie that (unbeknownst to him) contained peanut oil, I know I have no choice but to remain vigilant. Constantly. The teen’s mom, Robin Fitzpatrick, implored the public after her son’s death to “[b]e your biggest advocate always if you have any kind of an allergy. Please don’t take it for granted. Always inquire, always ask, don’t just go on other people’s say so. Really truly be your biggest advocate.”

Of course I think about those days, not long from now, when I won’t be able to monitor everything my son eats; when, like Cameron’s mom, I won’t be there to keep him safe. The thought absolutely terrifies me.

But for now, I will keep him safe. For now, I will read food labels, cross-examine restaurant staff, pack his lunch for school, and carry safe food with me wherever I go. I will hug him when he sees other kids eating food he can’t have; I will educate him so he can advocate for himself when the time comes. Yet for now, I will be his protector, striving to keep him safe while keeping his life as normal as possible.

And I am heartened by the significant advancements in the world of food allergies, shared with me by a supportive friend, recently reported in the New York Times. These new strategies give hope to me and many other parents that one day we may not have to keep our kids safe from birthday cake, and that, maybe one day, our kids won’t be in such frequent danger.

Until then, I (and many other parents like me) will remain on constant alert, keeping our kids safe – keeping them alive – and reminding ourselves that it is our privilege to do so.

* This article originally appeared on The Mommy Vortex.