More Than FPIES

Featured Blogger Kaylee Page shares her perspective on life with FPIES in an ongoing series. Today, she looks at how we can get beyond the FPIES label and enjoy our children fully.

“All I ever really knew about Bella was: her food, her food, her food. And I think everyone who interacts with Bella has FPIES first in mind and at an arm’s length away. Getting her to chew. Helping her eat enough calories in the day. Afraid. For any sort of accidental ingestion.
….But, she is a beautiful girl.”

With a little pause, Bella’s preschool teacher added: “So, that’s what I’m working on! Getting to know… Bella!”

As she shared these words, my eyes welled with tears and it took everything in me not to buckle over and throw up! She’s so right, I thought. She Is One Hundred Percent Right.
Driving home that day, I felt the weight of the world on my shoulders. I was trying to wrap my mind around just how badly I’d messed up. I could have pushed foods faster, harder. I could have talked about her bright spirit and caring heart, first, before rambling on and on about FPIES. I could have made more conversations about Bella’s development—not her FPIES.
I’m going to write a “Dear Kaylee” letter. (You know, those letters people write speaking to their past selves providing insight on how to navigate the story better. I like those letters. And I thought I could write a really good one providing a great step-by-step guide on how to do FPIES perfectly.) Even better, I’ll write it for all the moms and dads, I thought. I’ll use that to tell them how to do FPIES better than I did. How to nail it. How not to fail. Then at least all of my mistakes would not be in vain!

But when I actually thought about what I would have done differently, a part of me was torn. A part of me has a LOT I would have done differently but the other part of me is thankful, even proud, of our story.

So today, I have no letter, just the four “Ls”: Learn, Let Go, Label and Lean In.

Learn: We’d all love a guidebook on how to navigate FPIES. But each kid is different, and thus, each journey is different. A part of me thinks I could go back and do FPIES so much better. The truth is, there are a few things we (my husband and I) could have done better. But really, we learned so much. About food. About allergies. About our bodies. We learned about our marriage. We learned about ourselves and how we handle the hard, the difficult, even the ugly of life. And we’re stronger, braver, smarter and healthier for it.

Let Go: Like I said, I wouldn’t change our story. There are cringe-worthy moments when I see that I could have (maybe even should have) done it differently, but I just have to let some of it go. Imperfection leads to learning and growth. I can’t undo the past but I can let the imperfect go and certainly get excited about doing it differently moving forward.

Label: Because FPIES is scary it became all I could think about, talk about and plan around. So much so, that’s all I saw when I looked at Bella: FPIES. Our life was food. We spent hours in the day ensuring that Bella’s basic need—food—was met. I didn’t see anything other than FPIES, and sadly, that’s how I shared my daughter with the world. FPIES is one label but she’s much, much more: funny, outgoing, caring, strong, determined, bright-spirited, intelligent….

If I had to do it again, I would have paid a lot more attention to everything that is Bella—not just her FPIES.

Lean In: Fear has this sneaky way of robbing us from really beautiful moments in life. We think of the worst in the thick of a reaction, the thought that our child could die from FPIES (isn’t that what we’re all most afraid of?).

I spent my days “managing FPIES” instead of being mommy! I kept Bella at arms length out of fear. I loved her, sure. But it was more in this momma-bear sort of way. You get this, right?

This instinct to protect and provide…. But she was a task. A process. I had my check boxes of safety and provision. But I wasn’t fully present; I wasn’t available to her.
I didn’t lean in.

I was afraid. I was afraid to love her so fully and so wholly, and then possibly lose her. Even if that medically didn’t even make sense or apply, it was my fear! I wish I would have leaned in.
In the middle of the puke puddles, during Google searches, while taxiing from appointment to appointment—I wish I would have just stopped to see the little girl in front of me growing up, changing, smiling, laughing, learning and living life to the fullest. She was fine the whole time —a little different than I had anticipated—but she was going to be fine and good. In fact, beautiful.

So to you, knee-deep in puke puddles, in the moments when FPIES has you anxious, fearful and so very afraid: lean in.

Know and enjoy your child fully. See your beautiful.

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