Thursday, April 16, 2015

A Year with My Celiac Kid

One year ago we discovered that my daughter had celiac disease, which means she can't eat gluten or it makes her very sick (gluten is a protein found in many common grains like wheat). After 1 year of dealing with it I have to say I think I would rather we had discovered she had some other problem, like being born without a foot or something like that.

People can at least understand when you don't have a foot, and you just get a plastic foot and you're good.

And you either have the plastic foot on, or you don't. You don't have to stand there looking at a label while your wife uses her phone to research the internet to see if the plastic the plastic foot is made of is actually OK for her to wear.

And never, despite all assurances from the Internet, the manufacturer, the store you bought it from, etc that the foot is safe to wear, will the plastic foot in fact be the WRONG foot and start kicking her in the ass until we get it off and then continue kicking her in the ass for a couple of days.

I could just strap the foot on and let her go run and play. She'd get the hang of it after a bit and then I bet she'd barely notice it. I wouldn't have to watch out for other well-meaning moms giving her other plastic feet that might make her sick, or kids learning how to share sharing their own, toxic plastic feet with her. She could just wear the goddamn foot and get on with her day.

If my daughter needed her foot, but didn't have it for whatever reason, I bet she could use a cane or something, anything that would help her walk that we could find in the perpetual pile of crap that is in our family minivan.

On a road trip we could stop anywhere, use any facilities, even if we forgot the damn foot somehow. We wouldn't have to drive around looking for that one fast-food place that is safe for kids with one foot.

Okay, that's enough.

I'm sure being born without a foot (congential apedia?) must really suck in a lot of ways. But all the subtle ways in which my daughter having celiac disease means that her journey through the world is a lot harder make me think it wouldn't be so bad. Something like a missing foot is immediately obvious to all and, I'm certain, would elicit exactly zero complaints from people about the kid with no foot. Celiac is an invisible disease that isn't really fatal to anyone that has it unless that person is a tiny child. And when my wife tells people "we're gluten free" we get looks like "ugh, THOSE people".

I don't mind all the people getting into gluten-free for their health that much even though I'm skeptical about it. Frankly, with them around there's a lot more interest in making all kinds of products my kid can eat. Yeah, she doesn't need cupcakes or pizza but it's great that I can provide those things for her. I wonder what will happen when the gluten-free fad finally ends and people get into something else. How much harder to find and more expensive will this food be? Well, it seems like the number of people with celiac/gluten intolerance is going up ("MONSANTO!" shouts my wife from the other room) so maybe I don't have to worry about it. We'll figure it out regardless.

I don't want the world to change for us, that's pretty impossible and frankly I think would make the lives of a lot of other people miserable. Would it be nice to be able to eat anywhere we wanted without having to worry, just saying "we're gluten free" and the cooks change their gloves and give us our quinoa and chicken or whatever otherwise it's a huge lawsuit? Yeah, it would, but I think expecting that is what's wrong with a lot of people today. My daughter isn't the Princess of the Galaxy (just mine) and it's good for her to learn that, I think. She's going to need a lot of patience dealing with other people dealing with her disease, and some understanding too, that most people have no problem eating gluten and THAT'S OKAY and they're not evil or microaggressing her or whatever stupid shit they say in the future if they don't accommodate her every need.

But yeah, if I could snap my fingers and make the trade -- plastic foot all the way.




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