Food allergiesWhen I learned that my son, Henry, had a severe allergy to nuts and peanuts, I immediately thought of everything he would miss out on: PB&J, chocolate and peanut butter, trick-or-treat, my grandmother’s famous peanut butter bars. I cried, more so for myself than for him because he was only two and didn’t know the significance of his diagnosis at that age. Sometimes, I am not sure he understands now, and he is eight and a half.

He knows that we have to read labels and call companies about manufacturing procedures. He knows that we rarely eat at parties because a safe guarantee of food preparation is slim-to-none. He knows that sometimes he may end up eating steamed broccoli when we go to a restaurant that we thought was safe (meaning, we checked, and doubled-checked before arriving only to be cautioned about possible cross-contamination). He knows “no epi, no eat” and “no label, no eat” are commandments for us.  He knows that he has to give me all of his candy from trick-or-treating (yes—non-allergy parents, we may share stealing candy from our kids in common, but I take Henry to the store to pick out his own safe candy after relinquishing his stash to me.) And, what do I do with this candy? I actually don’t even eat it or keep it in the house. My school kids get the extra candy because I never want to take a chance that Henry would find the candy and assume that it is safe.

I have never wanted Henry to feel pessimistic about his allergy, so I often have to mask my fear for his safety and my sadness in feeling left out when people—friends, family, and everyone in between—whom I think “should” know better don’t. When Henry asks, “Okay, Mom, another party, but I can’t have cake, right?” I say, “Nope, but how about I make you some cupcakes for later?” Or, on a heavier note, Henry will occasionally ask, “Will I die if I eat a nut?” and I have to say, “Yes, Henry, you could die if you ate a nut.” Other times, I have to laugh. Recently, we were watching a Jeopardy episode. The answer to the clue was “Mr. Peanut.” Henry asked me with all seriousness: “Who is this Mr. Peanut guy? And why in the world is he going around with peanuts?!” I try to appreciate these light-hearted moments because managing a severe allergy every single day can be exhausting, but, we are managing. This is my positive in a world of challenges that often makes the negatives feel far stronger.

We live in a very strict routine about what we eat, where we eat, and when we eat because life-threatening allergies are complex. There are so many factors that go into our day-to-day decision making when it comes to allergy management, and often we feel isolated.  Most people don’t understand the complexities of living with allergies of this nature, and I have spent many years wondering why people don’t understand. I have taken personal offense to people who don’t remember that Henry has an allergy because “how can they not remember?” When I have to ask two or three different ways about how food has been prepared, I am angry that my questions aren’t answered clearly. When I have to remind someone that just because a label or brand was safe at one point, I still have to double-check the label. And, I am angry that my taking additional time to check the safety of the food is an inconvenience to someone else.

But, I recognize that I have sometimes been wrong to feel angry. This is where I try to be most days, not only for myself, but for Henry. Eventually, he will be asking these questions, following his own routine, and managing his allergy. I may feel alone and frustrated, but I want Henry to feel confident and secure in his allergy management as he grows. My attitude will become his attitude. We take time to discuss the moments when someone has been thoughtful to include Henry or to be careful about food items near Henry. When Henry’s friend asks his mom to read the labels on his packed lunches because he wants to sit right beside Henry, it brings tears to my eyes.  When we learn from another friend that Smoothie King has a dedicated nut allergy blender, and we can actually accept an invitation, we are truly happy. Trust me. We really do appreciate these seemingly “little things” because, then, we don’t feel so alone.

I am reminded to be thankful that even though we are dealing with an invisible foe many times due to the potential for cross-contamination, we do know what we are dealing with. Henry sometimes says, “I wish allergies never existed. I hate them.” I agree with him, but I explain to him that we are lucky to know what his allergy is because there are many people in the world who deal with unknown illnesses or illnesses that have no cure. We may miss out on activities or invites, but what dealing with a nut allergy has taught me (and trust me, I am still learning) is to “find the positive” in the negative. We almost never go out to eat, but we take time to make our own menus at home. We can’t go to bakeries or cupcakeries, or chocolate stores, but I have become almost as good a baker as my grandmother (minus her famous peanut butter bars). “Missing out” has become gaining, and this is the lesson we try to remember every day. 

Deirdre Johns is Mom to Henry, an eight and a half-year-old lover of animals and nature. She has been teaching English for thirteen years and has lived in the lowcountry with her family since 2012.