Featured Blogger Kaylee Page shares her perspective on life with FPIES in an ongoing series.
Some of you read that title and looked at me cross-eyed, too tired to give me a response.
Some of you are looking up from your knees while cleaning up a pile of puke that splashed all over your living room carpet while also managing to splatter itself on two adjacent walls. You are disgusted with me. I’m okay with that.
Some of you probably just want to break into tears.
FPIES can easily become your entire world. It’s the doctor appointments, sure. It’s the day-to-day making of meals, absolutely. But it’s the fear and worry of the challenges to come—this is what can consume your world. It did mine.
We had a time where we only had elemental formula and five safe foods. Her esophagus was inflamed from all the vomiting in her first year of life so they wanted us to wait before introducing any new foods. Once that cleared up we were given “all systems go” to introduce foods.
[BIG PAUSE WITH A DEEP BREATH]
… but I wasn’t ready. I was scared.
I would have left her on those same five foods if it had not been for our doctor patiently pushing for challenges and a husband who gave me little nudges from behind when my heels were dug deeply into the ground. I always had to double-triple check that we were really going to risk a reaction. I’d say, “You’re okay if we try milk today, right?” and he’d say, “Yes!” Three letters. One word. But it made all the difference.
I needed to speak it out loud to help me accept it and propel me to actually do it.
So we’d try it. And I’d freeze. For hours. For days even, it seemed. And if she passed – we tried it again. And I’d freeze ALL OVER AGAIN.
Was it enough to consider it a pass? I’d think. She did hiccup – maybe that was a symptom. No-no. She’s okay…. Right? Again. Try it again? Pass? Is this an official pass?
I froze up so much during our FPIES journey.
Trying new foods was maybe one of the worst parts of FPIES for me. But somehow, something started to change…
We had a “pea party” when we introduced peas. (Get it? A tea party that served peas—tea set and all.)
We got fun straws to drink up her introduction of cow’s milk.
We made homemade donuts for her first run at wheat.
Trying new foods became our family’s excuse for a little fun in our crazy intense FPIES lives. FPIES is hard enough as it is—for our kiddos, for us! It’s a new flavor, sometimes a completely new texture. It’s just all new. I didn’t want Bella to associate fear with the challenges. I’m sure she picked up on my nervousness, and I was nervous enough for the both of us. What she needed was hope, a big hug and a whole lot of fun!
Fun doesn’t solve the anxiety and fear of an FPIES challenge, but I’m a firm believer that anxiety, fear, hope and fun can all sit in the same room together. For me, in the back of my mind I worried that we were creating a fun experience that could lead to a severe reaction. But better that than a miserable experience leading to a severe reaction…am I right?
Life is what happens while we’re busy trying to control FPIES. So in the midst of fear, anxiety, worry and concern—LIVE—be in the moment, and make it the best moment it can be. You might as well live the reaction-free moments to their fullest as they can’t stop the actual reaction from happening.
If fun seems too far out of your vocabulary right now, it’s understandable. Fun didn’t start at my first rodeo. I sat as a nervous spectator the first couple of challenges. But slowly, I made my way out into the arena. And eventually I found myself riding a bull.
Turns out, the bull doesn’t win. We do. We face FPIES every single day. And in the end… we take it by the horns!