Denial, anger, bargaining, depression and acceptance. Those are the five stages of grief. Who would think that a bite of vegan spinach quiche—crafted with “creamy cashew cheese”—would catapult me into that first stage?
I know that the average American’s mouth doesn’t exactly water at the thought of a vegan restaurant, but after my daughter’s dairy allergy diagnosis at 9 months of age, this seemed ideal. There was no need to obsessively wipe down the highchair to rid it of smeared mac and cheese or to guiltily sneak bites of eggplant parmesan while she spooned some homemade concoction out of Tupperware. This time, she could order anything off of the menu and I wouldn’t have to worry about cheese, milk or a butter-laden grill. I took a photo to capture this milestone: My daughter was eating her first meal in a restaurant. She was 19 months old.
After one bite of the quiche, hives blossomed around her mouth. She rubbed her upper lip and then her eye, which began to water and swell. “Eye hurt, mama,” she whimpered. Fortunately, the reaction subsided within minutes. I scheduled a skin prick test with the allergist for the following week and spent the next several days lingering in that first stage of denial. I refused to believe that we had uncovered a new allergy. That splash of lemon on the dish was likely the culprit—it probably just irritated her skin.
Of course, the allergist confirmed what I already knew deep down inside—she was allergic to a variety of tree nuts. I choked back tears as the doctor commenced his Tree Nut Allergy 101 tutorial. I just remember bits and pieces: Only approximately 9 percent of kids outgrow this potentially fatal condition. Cross-contamination is a huge concern so we would have to avoid bakeries, ice cream shops, and just about every other backdrop for your standard childhood memories. Beware of shoddy food labeling (e.g., “may contain” statements are voluntary). The severity of future reactions cannot be accurately predicted by previous reactions or tests. The dairy allergy alone had seemed manageable. I had high hopes that she would outgrow it and was much less concerned about severe, life-threatening reactions (though they certainly do occur). The new diagnosis was overwhelming.
That week, I immersed myself in leaflets, books and online resources in an effort to embrace our new lifestyle. However, I found myself slowly transitioning from a state of shock to silently screaming, “Why us?!” I was angry. It wasn’t fair. I didn’t want to morph into a helicopter mom, hovering over her at family gatherings and playdates to smack food from her hand. Vacations would involve careful planning and coolers of “safe foods” rather than spontaneous road trips and lunch at greasy diners. I would have to inspect and loot her hard-earned spoils every Halloween. Suddenly parties, restaurants, holidays and everyday life seemed much more stressful.
When I expressed my anxieties, well-meaning friends and family members reminded me how lucky I was that I “only” had to deal with food allergies. At least it wasn’t cancer. Obviously. However, this would be a lifelong struggle that my child would have to face three times per day. If she lives into her 90s, she will experience over 98,000 meals, and I will be around for only a small fraction of those. The teenage years will be the most risky (young adults are at the highest risk of anaphylaxis). Furthermore, the very food that could send her body into shock will be viewed as benign, if not divinely mouth-watering, by most of her friends, roommates and partners.
In an attempt to connect with those who would not try to deliver the “well, at least she wasn’t diagnosed with x, y or z” pep talk, I joined an online support group for the parents of children with food allergies. I lost myself in posts for a good two weeks. I will always remember my first glimpses into the lives of real people, many of whom had no family history of food allergies, who were thrown into this community.
The 56 “likes” and counting for the mom who admitted she was relieved that the school Valentine’s Day party was canceled due to a snow day. “Hugs” for the 4-year-old boy being treated in the ER after falling face-first into a bed of peanut shells near a squirrel feeder. Parents praying that their little ones were vomiting because of a stomach bug, or even the flu—anything but another reaction. Preteens suffering from anxiety, nightmares, OCD and PTSD after experiencing multiple anaphylactic episodes. The girl who had developed a fear of food and had to be nourished with feeding tubes. The toddler who was hospitalized because his grandfather kissed him hours after eating a trail mix bar. Moms petrified of introducing solid foods to their second-borns after discovering multiple allergies the first time around. The countless families for which setting foot into a baseball stadium, movie theater or airplane is considered risky behavior (some kids react simply from touching contaminated surfaces). And worst of all: The mothers who had lost children and were on a mission to spread awareness. It was brutally depressing.
Just when I thought about leaving the group, I read a post by a new member who was in hysterics after her infant reacted to traces of nuts in her breast milk. She had followed all of the current recommendations for preventing food allergies: eating nuts during pregnancy, nursing the child, for example. Was there something that she could have done differently? I could relate. I scrolled through the comments and saw that an “old pro” had shared a graphic outlining the stages of grief. She encouraged us to mourn that carefree life that we had always envisioned. She gave us permission to cry. Over the next few months, I found myself tearing up occasionally—usually while witnessing kids being kids (toddlers nibbling on doughnuts in shopping carts, amusement park commercials with a clip of a preteen devouring a loaded sundae).
I now find myself in the stage of acceptance. Food allergies are becoming increasingly common, with 1 in 13 children now struggling with this condition. This means that schools, restaurants and airlines will have no choice but to become more accommodating. Scientists are developing treatments that reduce the likelihood of life-threatening reactions. Portable allergen detectors will soon be available to the masses, so I will be able to chemically analyze suspicious vegan quiches.
Of course, maybe acceptance becomes more palatable when it is topped with a dash of bargaining. No, I didn’t bypass the bargaining stage. In fact, I began bargaining the minute that the nurse scratched her tiny back for the allergy test. What I wouldn’t give to find a cure or to be part of that 9 percent who outgrow the tree nut allergy. Until then, you will see me lingering around the spread at a holiday party with a stylish epinephrine injector holster on my hip.