Living With FPIES

Jed when he was not much younger than Zac. Unfortunately, Zac probably won’t ever get to take a picture like this.

By now you have probably read enough to know that living with FPIES is not always easy.

There’s the constant worry, the high costs of food, the specialists appointments, the vomit, the diarrhea, the lethargy, the fear…but today’s post isn’t about any of that.

No, today I just thought I’d share with you one aspect of living with FPIES that makes it so isolating and lonely and sad.

Every year, my local Mommies group meets up to go to a gigantic Corn Maze, Petting Zoo, and little mini-fair.

We always take Jed. He loves the petting zoo most of all, but always gets a kick out of running through the maze, too.

It’s a fun, inexpensive family fall outing that I look forward to every year.

Last week I got notice in my email box that the meetup was fast approaching, and I got all excited!

Then the FPIES wet blanket smothered my enthusiasm. CORN MAZE, folks! I can’t take my horribly-sensitive-to-corn, wants-to-explore-the-world toddler to a corn maze! That’s just ASKING for a reaction!

Not to mention the food that will be on the menu at the event, or the feed and hay at the petting zoo. All of which could – and probably would – make Zac horribly sick.

Last year we didn’t know about his corn sensitivity, plus, he was just a wee baby that slept in the Ergo carrier the whole time.

I wish I’d know that was the last time we’d be able to go for who knows how many years. I’d have taken more pictures and savored it a bit more.

Then I got another email: they’re doing Pumpkin Painting at a local park this week!

Now that sounds really  cool, and certainly like something Jed would enjoy doing!

Again, here comes the FPIES wet blanket. Paint. Soy. Corn. Toddler. Exploring. Touching.

Hello, reactions!

So, once again, Jed misses out on something perfect and fun for him because FPIES just won’t let us participate.

I miss out on an opportunity to meet new people and try to make more local friends, and visit with the Mama’s I already know.

Zac is denied the chance to experience “normal”, fun childhood experiences.

And let’s not get started on Halloween…

I hate FPIES and Fructose Malabsorption.

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What fun things have your kids missed out on because of their food issues?