A place where, although still heavily restricted, we at least know what we are dealing with.
For three years, feeding Elizabeth was a game of Russian roulette.
Try a new food and wait 2-4 hours to see if she begins to vomit. Sometimes until her body goes into shock.
Repeat for the next fourteen days because she could pass the first few trials and fail the seventh attempt.
Such is the life of a child with FPIES- Food Protein Induced Enterocolitis, a nightmare of an intestinal allergy with no formal testing other than eating the food and seeing what happens.
Pair that with IgE mediated allergies to dairy, eggs and peanuts, throw a gluten intolerance that triggers severe eczema on top of it and you have our fourth baby girl.
Our little warrior, who in her first few years, endured misery.
The ocean water burned Elizabeth’s skin so badly during our family photo shoot, we had to stop. Camille Vaughan Photography
No wonder she was growth restricted in the womb! No wonder she didn’t just spit up but vomited after each nursing session! No wonder she never slept and always cried. The foods I was eating were her triggers and I had. No. Idea.
I eliminated all major allergens and lost twenty pounds in my attempts to continue to nurse her only years later to find out that the avocado I was surviving on was one of her triggers.
It took batteries of tests, UV light therapy and trial-and-error with her diet to realize her horrific head-to-toe eczema was caused by wheat. Steroid creams, nightly wet-wraps, and baths with me at 2 o’clock in the morning in desperate attempts to provide relief, even if temporary.
Yes, I keep putting it off because if I’m being honest, I don’t want to go back there.
I am running away as fast as I can from those awful memories, from the trauma that was raising baby Elizabeth.
But without risk we become stagnant.
Her diet never evolves and we never know, unless we try . . .
And so I finally take the call.
I set the date.
And I wait.
Camille Vaughan Photography
This is the first of many in-office food challenges for Elizabeth because she has so many FPIES fails: rice, sweet potato, beef, avocado, peanuts, and quinoa just to name a few.
But in a few weeks we begin with rice.
The first challenge: getting her to agree to eat a cup of the food.
A child with food allergies learns to become wary of any new food not previously deemed “safe” so I’ve had to start having conversations with her about trying this new food further adding to my guilt.
What if she fails?
What if I convince her to eat it all and she begins to vomit?
What will that do to her trust in me?
How will I stand myself?
I’ve held her limp, near lifeless body in my arms after an FPIES fail. I’ve helped load her onto a stretcher and into an ambulance at just 9 months-old. I’ve witnessed my husband and babysitter administer an Epipen three times while on the phone with 911.
I don’t want to go back there.
And yet, here we are.
Facing the trauma.
Looking beyond the wave of fear with the hope of passing and swimming in the deep richness of food variety with her sisters.
Instead, she seemed to crawl as far into her shell (me) as physically possible.
“What’s your name?” “What’s your favorite color?” “Can I get a high-five?”
All met with the same response.
Eventually, I faced her and explained, “When someone asks you your name, you say, ‘My name is Elizabeth.’ When they ask you your favorite color, you tell them.”
A light-bulb went off- for both of us.
Elizabeth’s entire life has been permission-based. She does not try a new food, unless explained-by-me that it is safe for her to eat.
And as the youngest of four sisters, she has always looked to others to lead the way.
So it finally made sense, why she had never responded before: she had never been told to.
And it finally made sense to her, that is was ok to respond.
She was simply catching up.
I shared this revelation with a friend of mine and her response, more-or-less was,
“Well, yeah.”
We dove into a conversation about our childhoods, how they’ve shaped us and ultimately how different they were.
Her military-based family traveled.
But her mother was always there and my friend always felt seen, supported and loved.
My mother traveled and always asked if I knew how much she loved me, for her own reassurance.
I realized, no one ever taught me, like they taught my friend.
I’ve always just figured it out, on my own.
I left home at 15 for boarding school, never to return home.
I’m not sure if it was the package of Bertie’s Every Flavor Beans or the recent memory of Halloween, but when one of my daughters asked our youngest if she wanted to try a questionable jelly-bean and I hesitated, not knowing the allergens involved, I saw, for the first time, our youngest change.
She understood and was affected.
Rather than ignore, I followed her into her bedroom and quietly conversed, “Hey, how are you?”
Forlornly, she looked at me and I knew the jig was up.
There was no more fooling this three “and-a-half” year-old.
I decided to meet her where she was.
“Are you sad because you aren’t able to eat the same things as your sisters?”
It was a first admission of mine. The terrible truth almost always substituted or downright avoided.
Instead of answering, she buried her head into my shoulder and wept.
What is a mother to do?
Pancakes, muffins, cupcakes, waffles, even popsicles I can substitute.
But jellybeans on the fly? I’m out of my realm.
She’s too old to fool.
Instead, I meet her.
Yes, this sucks.
No, this isn’t fair.
Yes, you can be sad and angry.
And together, we will find your way, child.
We are more than the worst thing that has ever happened to us.
New Leaf Parenting 