I stumbled upon a video on Facebook showing people putting down their devices and becoming present in real life again. You can watch this heartwarming video for yourself, here. It’s really beautiful. Strangers gather together, over a makeshift table in an apartment building hallway, bringing pot luck dishes and warm crusty bread to share.
The young and the old, sitting down to enjoy a homemade meal. The song, “What the World Needs Now is Love Sweet Love” plays in the background, almost sounding like a waltz bringing up my most treasured memories. Enjoying an ice cream on the boardwalk in Wildwood, NJ. A big family reunion at the firehouse. Thanksgiving Dinner with my Grandmother’s special recipes. Life’s major milestones, including religious traditions, marked with meals and desserts, shared with dear family and friends.
Before food allergies impacted my family, I loved all of these occasions. We thoroughly enjoyed exploring life through food, laughter and adventure. I couldn’t wait to travel to Ireland and visit our family. I was excited to watch my children enjoy the chocolates, sweets and special dishes my husband talked about while remembering his days growing up as a kid in Dublin.
Shortly after our second daughter’s first birthday, she was rushed to the emergency room because of a severe allergic reaction to a tiny bite of her sister’s peanut butter & jelly. Thankfully, I followed up with a board certified allergist as directed, who confirmed her severe food allergies and helped me learn how to safely live this new way of life. Sadly, the joyous days of carefree eating and feeding my little family came to a screeching halt. The allergist gave me a talk forever seared in my memory.
He told me EXACTLY what I had to do to keep my baby safe, even what restaurants, bakeries & ice cream shops I needed to avoid and how to read a food label for my baby’s allergens. He instructed me on what to do if she accidentally ate something with peanuts or tree nuts. He explained how I must immediately give her epinephrine because time was of the essence to improve her chance of survival. He showed me how to use the epinephrine auto-injector and said to then call 911 for transport to the emergency room for monitoring. He made sure I knew to never leave home without two epinephrine auto-injectors. I was told to follow up with him every six months to a year, making sure we stayed on top of her condition. An invisible barrier between life with and without food allergies fell before my eyes, like a garage door slamming to the ground.
I was in shock. My husband wanted a second opinion. After putting this allergy puzzle together, we connected it with her baby rashes, random hives and bouts of screaming. After replaying her first severe allergic reaction over and over in my mind, we knew our doctor was right. But as a nurse, with excellent training, I was angry. I never learned any of this in nursing school or during my time working as a nurse in the hospital. I couldn’t believe what I had to do to safely feed my child and family. But I was determined to adjust our life and fit back into this big, bad allergen filled world.
When I saw that Facebook video, it hit me over the head like a hammer. THIS is the heart of the matter. Imagine having food allergies and yearning to be a part of such a warm gathering. It’s not possible without what I call safety checks: what’s in the food, was there any chance of cross contact with allergens, were food prep areas, utensils and cook wear thoroughly cleaned before use, etc. This is what life feels like on the other side of that invisible door. How can you become part of the group when you can’t spontaneously share in such beautiful meals? How can you break through this invisible wall and explain your medical needs without sounding like an inconvenience? This can feel so awkward at times because food allergies go against the cultural norm we grew up with, to always accept food that is offered as a sign of respect. Somehow, those with food allergies must be welcomed at the table too, but this depends on others taking food allergies seriously.
Over the years, I’ve found the process of teaching my child how to advocate for herself with clarity, confidence and grace as one of the most difficult aspects of food allergy management. I fumbled my way through those early days, with my face turning red and my voice shaking. Then I realized she was watching me. I had to get this right. No matter how uncomfortable I felt, I could not let my fears keep her from experiencing life. I had to teach her how to speak up for herself. My goal is for her to be self sufficient and resilient, therefore I had to walk this walk and talk this talk. I found more seasoned food allergy moms and learned from their experiences. I’m still learning. But with each failure and success, we’re getting the hang of it. Now that she’s 10, she’s starting to find her own allergy voice, even during those socially awkward times. What a gift to see her grow in her confidence and gain this important food allergy conversation skill.
One day, I hope to scroll through Facebook and watch a video showing someone with food allergies joining the table. The person with food allergies brings a dish and says something like, “Does anyone else have a dairy allergy? I do and this dish is completely dairy free.” The conversation would go on, while they learned from each other about food allergy life, safely enjoying their meal at the same table, together. When people understand what life is like with food allergies, that invisible wall weakens. The safer, more welcomed and included people with food allergies become. What’s my advice? Be honest and brave, those with and without food allergies, and help break down this invisible barrier allowing love, sweet love to grow.