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.
“But the other kids are going to know I’m leaving.” She lamented.
I could have lied. I could have lost her trust by trying to convince her that, no, they wouldn’t.
But I met her where she was.
“Yes. Yes, they will. And this is a choice you have to make.” I said, instead.
“Either you endure a read-aloud that sends you into a full-blown panic-attack or you make accommodations for yourself, like anyone else with a disability does and you excuse yourself to the library. In other words, you own it.”
For me, it’s environmental allergies. When I pet a dog, I immediately wash my hands. I’ve owned dogs. I love dogs, I take allergy shots for dogs, but I am, alas, allergic to dogs. I make accommodations.
For her sister, it’s food allergies. I make separate meals three times a day to accommodate.
My daughter suffers from anxiety. We treat with professionals and we do the best we can do avoid triggers, when we can.
“What will I say, when they ask why I’m reading a different book?”
“You tell them the truth.” I explain. “You own it, you brave, girl. And you give others the chance to know that they are not alone, if they, too, feel the same way.”
“Why do you look so mad? Come on, it’s a beautiful day.” He said to me, fuming on the one beach towel I had thrown in at the last second.
Ugh. I hate it when he is right, which is so very often.
I was mad because I was trying to be spontaneous with four young children.
I was mad because for once, I was trying not to help get swimsuits on, pack snacks and lunches and apply sunscreen.
I was mad because it, of course, backfired.
All four of my children were in the ocean, fully clothed.
And now, my husband, too.
Today was supposed to be about our kids accompanying me and my husband to ECSC- an annual surfing and volleyball competition in our hometown of Virginia Beach.
This was our stomping ground- the way we first met- the way we spent our sun-filled days.
We had a truck-full of bicycles.
We brought water.
But we were there to watch volleyball so we left the rest.
And here they were.
In the ocean.
Laughing, begging me to join them.
What is one to do?
There was no other reasonable answer other than to jump in.
And it’s been 10 years (and 199 days but who’s counting?)
Since I’ve been home alone.
Let me repeat that.
It’s been 10 and-a-half years since I’ve been home alone.
I imagine that I will begin that first day crying and then laughing hysterically while eating ice cream in broad daylight watching inappropriate shows on Netflix.
And on the second day . . . .
On that second day I am throwing myself a celebratory brunch because you know what?
I’ve earned it.
And so have you.
Take time to cry and then upon realizing that they will be just fine,
I walked in and explained that I’d held on to this gift certificate since Christmas. That I was in the midst of a family trauma and that I was here to relax and let some of that go.
What I didn’t expect was to burst into tears 45 minutes through, as my massage therapist pulled the energy from my muscles and flicked it away. As she summoned my breath and thanked me for feeling safe enough to let it go in that room, with her, a stranger.
But there we were. 2 strangers united at 9 AM. She, not knowing the trauma and still, meeting me there. Helping me to release.
We hugged, afterwards. After all, after weeping, what else is one to do?
And then we carried on. Her next client. My day with my daughters.
New Leaf Parenting 