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What I've Learned as the Mother of a Child With FPIES

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Our FPIES diagnosis was a “curve bat” that finally settled me down. Just kidding — it opened up an entire new world of medical terms, symptom tracking and enough “poop pictures” for medical staff that would make your head spin.

I wonder if you are thinking, “Lady, the phrase is ‘curve ball.’” No, not in this case. In this case it’s far more appropriate to say that FPIES is a giant wooden bat swung in my direction, and I definitely didn’t doge it in time. But I’ve learned that’s OK.

Without FPIES, I wouldn’t have learned the entire process of digestion, how to appropriately decline any and all meal invitations, how to tear apart a food label faster than you can whip out Google and most importantly, to tell you in far too much detail what my son can currently (not) eat and why.

The thing is, whether your child has a disability, high needs, is chronically ill or somewhere in between, the real lesson to take away is as parents we become their advocates. And in doing so, we tend to learn a lot of skills that could be otherwise seen as irrelevant. But they aren’t to me, or to any other mother who has had to go through the ringer to be told, “yes mama — you’re right.”

If you ever get two allergy mamas in the same room and ask them for the top 10 cross-contaminated grocery store food items, you’ve got the WWE of the medical world. While some people might think this is not impressive, some of us think we’re pretty cool.

Follow this journey at Motherhood Unhinged.

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Getty image by Ridofranz

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