Thursday, May 21, 2015

National Eosinophil Awareness Week - Day in the Life

It’s National Eosinophil Awareness Week.  I haven’t really done anything, but I’m aware.  Boy, am I ever aware.

A lot of families I know posted challenges on Facebook – Eat like an EoE kid for a day!  They’re accompanied by lists of foods that have to be avoided by their children (common culprits like peanuts, soy, wheat, milk, eggs – and less common ones like apples, potato, beef.)  Others post lists of the meager and incongruous groupings of things their children can eat (tapioca, rice, turkey, blueberry) and urge their friends and family to step into these shoes, just for a day.  If you fail, donate $10 to Eosinophilic Disorder research.  If you don’t – think about living every day this way – maybe donate anyway.

I would never ask this of my friends or family.  I’d never wish it on my worst enemy (okay, maybe my worst enemy.)  As you know, if you know us at all, Aidan has no foods.  None.  Nothing.

If you ask him, he’ll happily tell you that his favorite snacks are chocolate, pepperoni pizza, and pretzels.  Those, he’s decided, are really socially appropriate things to say.  Sometimes he needs me to remind him what color chocolate is because he really doesn’t know.  Can you imagine?

While other families are drilling their preschoolers on stranger danger, Aidan is learning to be strong and assertive when someone tries to offer him a snack.  No, I have allergies!  No, I can’t have that!  Just. Say. No. 

So, okay, I won’t ask that you live a day in his life.  But close your eyes for a minute and think about it.  As your friends and family enjoy their snacks and meals, you can have a cup of water.  You can’t sit too close to anyone who might be eating – that wouldn’t be safe for you.  You can’t play with any toys or work on any crafts with food ingredients (sorry, Play Doh!) – not safe.  No soaps, lotions, or shampoos with “all natural” ingredients like fruit extracts or shea butter – might as well just say “all deadly.”  As you go through your day tomorrow, think about how different it might be if food – everything that is food or has food in it had to go. 

Isn’t it all the more impressive that this guy does it all with a smile?