There was a time in my life (before I had kids, when I thought I knew everything) when I thought it was ridiculous that schools were banning peanuts, or making kids with peanut butter sandwiches eat at a separate table. Why not just shove all of those allergy kids over in the corner and let them eat there?
A lot of people still feel that way. Food allergies don’t affect them, why should they care or go out of their way to take care of those people? Why should their kids miss out on time with their friends because they want to eat peanut butter on their sandwich?
I think God looked at know-it-all me and laughed a little. I like to think that He understood that I didn’t know any different because I, like so many people, wasn’t affected by it.
Fast forward a few years, and I found myself completely mired in the trenches I had thought I would always be able to avoid. Not only did I have a screaming toddler and a screaming newborn that were unable to tolerate anything other than prescription baby formula, my digestive system had begun it’s own revolt and was threatening to take the rest of my body down as well.
Somehow, over the course of a few months, we became a food allergy family. Not just a little bit of like, hey we can’t eat shellfish because we get itchy, no…this was an entirely different beast.
My kids have FPIES – Food Protein Induced Enterocolitis Syndrome. It’s such a mouthful that even doctors have abbreviated it. We spend our days trialing one new food at a time, and we’ve been doing that for years. Something simple to most people, like using a canned pasta sauce, takes many individual trials for us to make sure each tiny ingredient is safe for our kids. There was a time when even cross contamination to some of their trigger foods would start a reaction that would take days or weeks to resolve.
It’s something we’ve learned to live with, and I don’t always notice it like I used to. We’ve become that family, and our family and friends have learned how to support us and help along the way.
But, sometimes in the middle of food allergy life, there are moments that catch you by surprise.
Like when you finally have enough safe foods to make (from scratch) pizza for your kids to take to a birthday party. You overhear your daughter proudly telling everyone at the table that her mom made that pizza for her. You would think it was made of gold instead of a crumbly mess with no safe cheese to even hold the toppings on. It didn’t matter to her. I looked at my kids in that moment, enjoying the same food on ninja turtle plates as everyone else at the table and I had to choke back a good amount of tears.
Or, when you make hamburger buns for the first time to take to a pool party and you are so proud of what you made, then quickly realize you have to teach your three year old how to eat it because he’s never had a hamburger on a bun before.
Or when your little brother uses a 3D printer at his work to make goldfish shaped cookie cutters for your daughter who is enamored with the idea of goldfish and probably still has a few years to go before she can eat one from the store.
There are many really sad moments in a journey like this, but also lots of really, really special ones as well.
Sometimes when you go through the darkest places, it makes even the smallest victories and glimmers of hope seem more amazing. Those are the victories that have been fought for and hard earned. Life with FPIES is hard, and there is a lot of dark. But, there is a lot of beauty as well. You just have to look a little harder sometimes to find it.
“Happiness can be found in the darkest of times, if one only remembers to turn on the light”
– Albus Dumbledore