Allergy Mom: Try. Please try.
Posted May 26, 2014
Please try to put yourself in my shoes.
Please don’t look at me like I’m crazy when I ask you if your kids have consumed peanut butter today. Please have compassion in your eyes when I tell you my son has a life-threatening food allergy. Please try to understand the severity of this diagnosis. Please don’t just try to pacify me and brush me aside as overreacting. Because I promise you I’m not.
“Welcome to the club you never wanted to be a part of.” That was in a note from another food allergy mom on the second day after we confirmed Elias’ peanut allergy. I’ve thought of those words so many times.
That mom’s advice and informational email was just what I needed to comprehend what we were dealing with. But more than that, I needed to feel that someone understood my panic. I needed to hear that she had survived, that her child was thriving and we’d get into our new groove. And for the most part, eventually, we did.
There was a mourning period. A time where you mourn the freedom you had before. When your fear or worries could be about something a little less… everywhere. Peanuts. Are. Everywhere. I kid you not. The more I learned, the more scared I was.
Some of it was made worse by my history with anxiety. My brain is always going. I’m obsessive. I admit it. But this peanut allergy about did me in. And I soon realized from the online support groups that I wasn’t alone. Other food allergy moms have the exact same internal struggles that I do. They constantly (and I mean constantly) fear for their child’s life. Just like me.
I quickly learned that most people just don’t get it. And, I didn’t get it before this either. I thought, eh, don’t eat peanuts. How hard is that? But it’s so much more than that. Peanut allergy is one of the most dangerous. A peanut – or a speck of residue that is invisible to our eyes – could kill a peanut allergic child.
Read that again, please.
Try to gauge our fear that our child could encounter some crumb on the playground, wipe their eyes casually and trigger a reaction. Or that the tablecloth at our favorite local eatery could have smeared peanut butter from the previous diner’s meal.
It could get on our child’s fingertips as they are eating their carefully selected safe meal and anaphylaxis could occur. Imagine that the toys in your church’s nursery have me so afraid for my child’s life that I am too scared to take him to church. Or that before I can sign your kid up for a gymnastics tots class that I need to have a sit down conversation with someone reliable about how they handle food in the gym and hand washing before and during class. Picture yourself enjoying your older (non-allergic) child’s first soccer lesson and kids are running around with sleeves of peanuts sold at the snack bar and your experience is ruined with fear.
If I had to list out the foods we can’t consume as a family now because of their warning labels, you’d be shocked. In fact, I love to see a brand such as Kellogg’s or Pillsbury label for ‘may contain’ items. Because that means they pay attention to cross contamination. And if there was the slightest chance that peanut crumbs from the machine made its way into our Corn Pops, it’d say so.
This level of detail is not required by law. They don’t have to tell me that peanut granola bars are processed on the same equipment as the whatever cereal bars. So pretty much any new food item I pick up at the store is a gamble. And each time I buy a box of item X or Y, I have to reread the label as something may have changed. Hot dogs, bacon, sausage, rice, veggies, bread – it’s all a mealtime risk. Every meal. Every single day of our lives.
It’s the same scenario with fresh produce and making things from scratch as much as possible. I wash, wash, wash produce. It could have been stacked beneath the crate of peanuts on the loading cart. I’ve called flour companies and I know which brand is safest for us. Yes, flour.
I’ve called barbecue sauce companies. Countless restaurants. I’ve shared our safe list with friends so that we can enjoy a meal at their home. I’ve helped to plan family pot luck gatherings so that I can help everyone prepare items that are safe for Elias. But, even then, you are making the assumption that things were baked on safe pans and baking trays. There are potential dangers everywhere.
A quick story: I have a close friend that told me that because of our story with Elias, she was being more cautious with her own children. They are not food allergic, thankfully, but she started thinking about where they take their PB&J sandwiches.
For example, they take piano lessons here in Raleigh. While one sibling had a lesson, the other would eat a peanut butter sandwich before their lesson began. She told me that she realized she needed to take another food to these lessons. Her kids were going to play the same piano as other students, and as preschoolers of course they will have peanut residue on their fingers, hands or sleeves.
Suppose Elias came in after them and began a lesson? It could turn into a very dangerous situation for him or another peanut allergic child.
I was happy to hear that our experience was helping our loved ones protect other food allergic children. That’s what I want our story to be about – creating awareness. Telling the nitty-gritty details of what goes through the mind of food allergy moms, and food allergy children.
So, when I ask if your child has had peanut butter that day before they share a sand shovel at the park, please don’t look at me like I’m crazy. I’ve seen horrific images and heard first-hand stories of these specs and traces of peanut protein sending children just like mine – and just like yours – into the ER in anaphylactic shock. Sure, that’s probably not super common and it’s more likely that we’d get a hive or two. But it could happen. It does happen. And I cannot risk that with my child’s life.
My child is my world. Just like yours is to you. Or like you are to your parents. Please try to understand that we are scared. Every day. A world that revolves around food sometimes feels like it’s closing in on us. Help us keep our children safe. Help us fit in and feel protected. Help us trust each other. Help us all grow more aware.
Kira is the mom of two boys in Raleigh and owner of Krobe Interactive. She is writing regularly about her son's peanut allergy and his treatment.