What food allergy looks like

I admit it: before Little N was diagnosed with food allergy, I didn’t get it. Big E has food allergies, too, and was diagnosed before Little N even started solids. But there was one incident, which was not anaphylactic, and while scary, it was a food (tree nuts) that is fairly easy to avoid. My mom has oral allergy syndrome. Her mouth gets itchy if she eats certain fruits. I have seasonal allergies, as does my husband. We get itchy eyes and runny noses in the spring. Annoying, but not that big of a deal. Easily fixed by taking a couple of pills until the pollen is gone. I didn’t get it.

I’d like to think I was sensitive about it. I mean, I felt sympathy for people with food allergies. I work with two people with  life-threatening food allergies. But without thinking, I ordered hazelnut coffee at the request of another coworker, not realizing that I had just contaminated the coffee maker, forcing my food allergic colleague to buy her coffee every day.

And since Little N’s diagnosis, I’ve encountered some really unbelievable sentiment and situations. Here are a few:

  • At a party: The baby wants the food! Why don’t you just give it to him? He would like it! (I don’t want to go to the hospital right now.)
  • At church: Childcare workers left bowls of cheese-covered crackers on toddler tables within reach of our son after we carefully explained his dairy allergy. Big E noticed them in Little N’s hand and alerted the caregivers. They seemed to think it was not a big deal. In reality, it could have killed him.
  • From other parents: It’s not fair that my son can’t bring snacks for the whole classroom just because one kid in his class is allergic! My son doesn’t have food allergies. We shouldn’t have to cater to one kid!
  • And from many well-meaning friends and family members who simply don’t understand the severity of his illness. Friends and family members who downplay or think we are overreacting. We had a friend suggest to us that perhaps he has food allergies because we are overprotective. If you can believe it.

And I get it – I do. Because that used to be me. I just didn’t get it. I didn’t get what it feels like to be excluded from social occasion after social occasion because other people don’t get it. I didn’t get altering every part of your life. I didn’t get that sometimes food = fear. I didn’t get that food can kill you. As in, dead.

And I want to share what food allergy is like. What it looks like when your whole body thinks a benign substance is poison.  I’ll say nothing here (but might in another post) about what it feels like to be in a cab racing to the hospital, watching your child lose consciousness in your arms – the fear, the blind panic as the cabbie tries to find the ER entrance and you keep checking to see if your child is still breathing.  For now, I’ll just show you some pictures, all of which are pretty mild compared to what we have seen on other occasions, when we are too wrapped up in the emergency to snap pictures.

10% of children under the age of 10 have severe food allergy to at least one food.

The pictures below are of Little N after a very, very minimal exposure to an allergic food. (Think, licking something in which his allergy is the 8th ingredient on the list.)  That’s him in hospital bed after an exposure to sesame seed (tiny amount).  What you can see is how the allergy affects his skin. What you can’t see is how it affects his lungs and his stomach and how it might affect his heart.

I want you to see this. Because I get it now. And I want everyone to get it.

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And here’s my baby without any allergens in his system.  Pretty cute, huh?

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And then there is one instance I’d like to mention, too, because it meant so much to me.  Little N had just been released from the hospital. I was exhausted – totally physically and emotionally spent. We had been invited to a birthday party of Big E’s little friend from church, whose parents have also become friends – two of the most lovely people we have had the privilege of getting to know. I really wanted Big E to go and have fun, but there was no one to take him but me. My husband had another commitment that afternoon, and I had no one to watch Little N, either. I bundled the kids up and took them to the party, with no time to bake something for the kids to eat. I felt depressed. I felt like the worst mom ever. My son was going to watch as everyone else dug into birthday cake. This boy who loves cake – I was going to have to tell him no – we can’t be sure it doesn’t have nuts. I sat at the edge of the playground holding Little N, watching Big E play with all of the other children, feeling down and tired and dreading what was coming up.

And then the non-allergic-to-anything birthday girl’s mom walked up to me and said, “We bought these for Big E. We thought maybe they’d be ok for him?” And she pressed into my hands two beautiful nut-free cherry tarts she had gone out of her way to buy. They were even labeled, so I could read the ingredient list. I choked back the tears and thanked her for her thoughtfulness. There aren’t many times in my life I’ve felt more grateful. And I watched my happy, happy boy devour them, eating birthday dessert just like all of his friends.

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Filed under Food Allergies, Parenting

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