I’ve read two recent articles from Allergic Living touching upon the feeling of embarrassment that can come along with the diagnosis of food allergies. Both stories expressed how the two young people with food allergies who died, didn’t like to make a big deal out of their allergies. The grieving mom of the one young man tells people to speak up about about their food allergies. She is also an ER Nurse. Her story is here. In another article, the friends of a high school boy who died from anaphylaxis repeatedly say they wish they had known what to do during an allergic reaction. You can read their tragic experience here. Two different tragedies. The same rallying cry: Speak up and educate everyone you know about anaphylaxis and how to respond. I am in awe of these courageous people who share their deep sorrow with the hope of saving others. We all need to listen.
My heart. It sinks reading these desperate calls for help. Especially from the mom who is also a nurse, like me. Those kids, they could easily be the friends of my child. Will my daughter know how to speak up for herself with confidence in high school? Will she be able to handle travel and attend work events when starting off her career? Will her desire to “blend in” and not cause an “allergy scene” cause her to make poor choices? Will she teach her friends and colleagues how to help her if she experiences a severe allergic reaction? Will she be brave enough to *ask* for help, understanding she will not be in trouble or punished for having a reaction? What if she has a bad day and pops a piece of (contaminated) chocolate in her mouth without thinking first? Just one wrong bite… accidents happen. We’re only human. All of these thoughts flood my mind. I tell myself to slow down. She’s 10. But for those few moments, I see her in each of these scenarios, and it’s overwhelming.
I do not have food allergies. I am the person who never wants to cause a fuss. As a guest in someone’s home, I was raised to have good manners and graciously eat whatever was put on my plate. When I was around 5, I remember I ate lima beans at my friend’s house. I never ate lima beans at home. I thought they were disgusting. My mom was shocked when I told her I ate them. At a restaurant, my parents taught us to not complain or send food back unless there was a serious problem. “No, I’m not sending that burger back. Pick the onions off and eat it!” I can still hear my Dad’s huffy voice in my head. Once on vacation, my brother didn’t like how his steak was cooked. The waitress picked it up, flipped it over and gave it back to him! Yes. Maybe my dad was right. Just eat the food you’re given and be thankful.
When you have food allergies, the old ways we learned go out the window! I think this is where that feeling of “being an inconvenience” stems from. It goes against our very upbringing. I had to learn how to speak up and advocate for my child without being afraid of offending someone. At first, my husband was way better managing these difficult conversations. I wanted to hide under a rock. I didn’t know where to begin. I felt flustered, like I had a neon “Food Allergy Mom” sign glaring over my head, 24 hours a day. Those were uncomfortable days. That invisible sign still glows bright during transition times, but then dims down again to a livable level. We’re learning to live with this allergy light on, but now it’s more like a comforting night light. This soft light has become our beacon of hope, representing the much needed food allergy education and awareness.
Being comfortable with your food allergy light is an important step in managing life with food allergies. You need to become very comfortable talking about food allergies and educating others with your own authentic voice. Much like a night light, the ability to educate others provides safety and guidance without getting in the way of living or sleeping! It has taken me years to carve out a secure spot for this little light. My hope is my daughter will take her own light with her when she’s ready to leave the nest, just like she learned how to ride her bike, cross the street, and someday drive a car. This light is not something a child can learn to switch on in a day. This a process, and she is carving out a secure space for it in her own life.
That’s the place I return to, when my mind zooms off into the future. When I think about her hanging out at a high school party or sitting down at a business dinner. My hope is our daily rituals, that little light, will be as natural to her as the color of her eyes. One day she will shine and be able to articulate clearly, eloquently and gracefully her food allergy needs, without feeling like an inconvenience. My prayer is for those she is relying on, that they will take her seriously. This is something we practice over and over, learning from our mistakes and celebrating our successes, no matter how small they seem to the outside world.
The daily conversations will pay off. “Do you have your epis? Did you ask where the party will be? Did you call the restaurant? Does your friend’s mom know how to use your EpiPens and call 911? Where’s your medic alert bracelet? Did you check the ingredients? Did you wash your hands?” While others may see this as nagging, it’s making an impact. She’s making this a part of her daily routine. I notice her packing her epinephrine for sports. I see her read labels and prepare her lunch for school. I’ve heard her speak up for herself at school. I’ve watched her friends look out for her. This process is working. Her light is starting to shine.
Keep at it, moms and dads, and all those who care for kids with food allergies. Together we will continue to make a difference. With 1 in 13 kids having food allergies, we are not alone in our efforts. One day, our kids will be managing this all on their own. As a mom, I know the worry will always be there. But, with their little allergy lights of education leading the way, as a beacon of hope, the road won’t be as dark and scary.