Featured Blogger Kaylee Page shares her perspective on life with FPIES in an ongoing series.
Mom, when we making bagels?
Mom, I wanna another bagel?
Mom, can I get sum-uv-dat bagel again?
What Bella calls a bagel is actually a donut. But I can’t convince her otherwise!
She has outgrown her FPIES triggers and had her first bite of wheat on New Year’s Day. I figured we’d ring in the new year with a new food—and what better way to do it but with a homemade donut (or bagel as she calls them)!
This donut experience has kicked off the “post-season” in our FPIES journey. For the first time, I feel like maybe I can start using the world normal when I talk about Bella and food.
And she outgrew FPIES nine months ago!!
Wasn’t she normal back then? Or all along for that matter? And what is “normal” anyways, right?
Knowing she had outgrown it didn’t make me want to jump in head first with french fries and Slurpees! I was nervous. I’ve talked about that here before—how I think parents have to outgrow FPIES too. So we took our sweet, precious time adding in new foods. And normal started creeping into our lives but I didn’t feel it, not until the donuts!
Mostly, the past four years have made me feel very un-normal. (And this is how I feel. I can only imagine how Bella feels!)
If you are on the FPIES journey, you know that the question “What is normal?” is very real and near to your heart because you live and breathe abnormal. Food is a big deal. We eat three times a day (at minimum). We spend hours preparing it, ordering it, thinking about it and the best part: enjoying it! It is a huge part of life and culture. With FPIES, you get a very visual reminder of abnormal at least three times a day as you watch your child eat or drink with you, their siblings, their friends. They ARE different.
I had a hard time with this—with this whole idea of labeling and figuring out where Bella fit into the world. I wanted a label because I wanted to feel like I belonged somewhere. Because most days I felt very alone and didn’t feel like our story fit anywhere or with anyone else. Her eating needed special care and yet I found myself feeling like our story was too different to fit into special needs but also too different from the day-to-day living I saw from the “normal” moms around me whose kids gobbled down crackers, licked their ice cream cones and munched on anything set on the table!
I didn’t want to say “she’s not normal” or accept it. I was uncomfortable with what it could mean for her story. I could count 100 ways she was normal…but I didn’t want to speak the one thing that truly was defining our lives at the time: the reality of FPIES being a very different road from most.
I remember—day in, day out, meal after meal—Bella would eat her five foods and drink her elemental formula. I felt like a failure with every bite of not-normal.
But I remember even more, the courage and strength it took for me to finally speak out loud that our story was not the normal I had expected or wanted. I remember the freedom it gave me to accept that we were different. I had been trying so hard to be normal that it had kept me from moving through FPIES with grace and hope.
Trying to be like everyone else was exhausting. Waking up and being thankful that my daughter was growing and thriving was exhilarating!
I was more patient with trials. I was more accepting of failures.
I became less controlling. I became more free and allowed life to change and exist in due time.
Slowly, our different became a very special thing. Easter became a scavenger hunt of finding the best pair of fun socks to stuff in the Easter eggs. Halloween was full of tricks and less treats—go dental hygiene! Christmas stockings were stuffed with more fun socks (because, well, we found out how much this girl loves her socks!).
Ready or not for it, normal or not because of it, FPIES is real. And to walk through each step of it with as much poise as you can muster for the day, you have to accept that there is a part of your child that is different.
Someday, you’ll need to tell yourself that you’re closer to normal than you feel. Other days, it’ll be vitally important to embrace how un-normal life is…
I’m so proud of you. I know your story—not fully, not wholly—but I have walked at least a good mile in your shoes. And I applaud your strength. Strength you probably never knew you had. In a world that got flipped upside down, you have gotten up every single day and walked this journey. Bone-aching tired. Endless extra work to make food happen in your kid’s life. Countless doctor appointments. And lots of lots of emotions. And you’re still here—doing it.
So strong, I tell you. So very strong.
Maybe someday we can all get together? FPIES would seem so normal with us all in the same room, wouldn’t it? We could cry, share and stand together in the face of FPIES… It would feel so good.
You’d bring your sweet self and I’d whip of some of my fresh homemade, say it with me, BAGELS!
