FPIES Angels

It’s a common complaint in the food allergy world: people don’t get it. They don’t understand, they don’t help, they don’t care.

That is true in a lot of cases, but one of the greatest joys of food allergic living is when you encounter the opposite.

You’re going about your business, being and doing what you always do to keep your child safe and BAM! You’re blind-sided by a gesture or word from someone that let’s you know: you’ve just met an angel.

These encounters inspire gratitude so deep and profound that they motivate you to pick up the pace and keep going. They are encouragement in the darkest moments, and their worth is more valuable than words can express.

Today I want to talk about some FPIES Angels I’ve met and heard of, so everyone can get a little encouragement today.

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A couple of weeks ago we went to visit my oldest friend in the world and take photographs of her graduating son.

I’ll admit I was nervous about traveling to someone else’s home with both boys. There were lots of ways it could have been difficult, or even downright awful.

My friend, her husband, and her son, however, were absolute FPIES Angels!

They made it so easy for us. They asked questions, made accommodations where they could, helped keep an eye on the boys to make sure they didn’t get in to anything they shouldn’t, and were, in every sense of the word, a huge relief!

We were never treated like we were a burden or an oddity. We were treated like old friends…albeit old friends with special needs.

It was a breath of fresh air, and an encouragement to consider that we may not have to be as cloistered as we have been.

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My parents are always FPIES Angels. They sometimes have a hard time keeping track of which boy can have which foods, and which foods the boys absolutely can’t have, but frankly, so do Darrel and I! It’s a lot to keep track of!

But from the first bloody diaper we saw with Jed 3.5 years ago, they have done everything they could to support their grandchildren.

My mom has put together entire holiday feasts that were completely safe for Jed to eat, down to the smallest side dish. They’ve changed brands of many foods in their kitchen permanently so that they will always have safe things for me and the kids and won’t accidentally give them the wrong thing.

My dad has changed the way he feeds his chickens so we could have safe eggs for Zac, and I know he’s making plans to raise other animals that could be safe for the boys.

They’re also planting a garden, and plan to grow everything corn-free and organic so my boys will be able to eat anything they can handle safely.

In a million little ways, my parents have been Food Allergy and FPIES Angels from the beginning.

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My in-laws didn’t jump on the FPIES and Food Allergy bandwagon from the beginning, but as time has gone on, I have to acknowledge that at least one thing they do consistently has made our lives possible: cows.

At first, it was a hard sell to convince them we needed purely grass-fed and finished meat. They really wanted to grain the cows! But they have complied, even when they thought we were crazy, and provided us with numerous grass-fed and finished cows at cost. They even deliver them to the butcher for us – and a few times have even picked up the meat for us!

We wouldn’t have made it as far as we have without their cows, and for that, I’m truly grateful.

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Our church, as I’ve said, isn’t a very safe place for us at the moment because of dangerous art supplies and the prevalence of food, but our church is filled with FPIES Angels nonetheless.

They took up a special donation for us before Christmas to help with our huge costs while I’m out of work, and two families donated supplies to help us enclose our front porch to make the house safer for Zac.

We’re so grateful to know that even though we can’t be there weekly, our family hasn’t been forgotten and that our church family still cares.

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We are blessed to know two wonderful people with children the same ages as our boys, who I’ve mentioned were amazing FPIES Angels. She put together a fund raiser that provided many diapers and some money to help us, and she and her husband donated new floors for our living room to keep the house safer for Zac. He even installed them for us! (Darrel did help, but we could not have done it alone.)

I’m so sad to share that these friends have taken a new job in another state, and are moving away. But we will never forget them, and never stop being grateful for their willingness to be FPIES Angels.

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I would be remiss if I didn’t mention my animal people as FPIES angels. Mark at Bug Scuffle Farms is an FPIES angel of the best kind; he didn’t know anything about FPIES but was incredibly receptive to our needs. He treats his animals with respect and care, and raises them the right way just because it’s the right thing to do.

Christina at Rolling Hills Traeger Ranch is downright amazing! Her love for her animals is clear and strong, and her concern for the people who eat her meats is touching.

They are the best example of farming transparency I’ve ever encountered; they will talk about every aspect of ranching with no double-speak or obscurity.

Christina feels so strongly about her part in helping FPIES kids eat, as a matter of fact, that she has started a fundraising campaign that will enable her to not only continue raising her animals safely, but provide free shipping for FPIES families who desperately need her meat to keep their kids alive.

I’ve seen her join message boards relevant to FPIES living so she can better understand and respond to these families needs, and I’m blown away by how much she is trying to be a fundamental part of helping struggling children find safe foods. If that’s not an FPIES Angel, I just don’t know what is!

(If you’d like to help Christina continue to help children like Zac – and the many others I know use her meat – please consider donating to her GoFundMe account! Thank you!)

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We have many friends who send us messages when things are rough, who tell us they’re thinking of us, and who encourage us by their interest and concern. We have friends who are supportive and encouraging of Darrel’s Photography business, partly because they want to help our family earn more money and mostly because they believe in his talent. They’re all FPIES Angels, and I want them to know that we are blessed by them.

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I’ve heard of some wonderful FPIES Angels on the boards, too. From the little girl who insisted her birthday party provide only safe foods for her FPIES friend to the daycare that changed all their art supplies to be trigger free for their FPIES enrollee, there are just as many FPIES Angel stories out there as there are of people who make things harder.

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I wish I could give all these people hugs, money, or in some way repay them for all they’ve given to us and our fellow FPIES families, but I can’t. The only thing I can do, though, is to thank them, and tell the world about these FPIES Angels! This journey would be so much harder without them!

I would really, really love it if you would leave a comment on this post about an FPIES Angel in your life! We all need encouragement sometimes, and being able to read your Angel stories will surely help someone else keep on fighting!

Who’s the biggest FPIES Angel in your life? How do you like to say thank you to your FPIES Angels?