“You’re such a good mom.”
They say to me with awe and pity.
And I wonder,
If you were me, would you do anything differently?
I’d like to think not.
My child, with food allergies, gets invited to a birthday party.
Of course I bring her own cupcake- dairy, egg, peanut and wheat-free.
This is our normal.
And yes, it’s hard.
But if it were you . . .
You’d do it, too.
We’re Moms.
It’s what we do.
Camille Vaughan Photography
They keep calling and I keep putting it off.
The inevitable.
It took so long for us to get to this point-
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.
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.
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.
Hold my hand, baby girl.
Here we go!
She called and she said, “I don’t know what to do.”
And I said, “Here’s XY and Z.”
All the places someone else can help.
“But here’s the truth.
There’s no one more qualified than you.”
Listen, I have those kids.
They need professional help.
They need accommodations, counseling, services and meds.
And we utilize them!
But at the end of the day,
What do they need most? Above all? Since birth? In addition to God?
Me.
They need me to show up.
Me not to punt them and their struggles for someone else to solve.
They need me to hold their hand.
When it’s ugly and neither of us know what the hell to do.
They need me to just walk alongside them through it.
I fill blanks with the qualified but I also remain steady.
No matter what they are going through,
I am here.
“And that’s what you do.
You stay.”
I stay.
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.
We will find our way.
“Nobody knows how the story ends
Live the day, doing what you can
This is only where it began
Nobody knows how the story ends.”
And so goes the life of our Elizabeth.
Little Lizzie had 10 vials of blood taken last week. She’s still severely allergic to dairy, egg and peanut and FPIES (Food Protein Induced Entercolitis Syndrome) to rice, sweet potato, avocado, quinoa and beef.
We have avoided soy, corn and wheat out of utmost caution for her severe eczema.
Until tonight-
When she tried a skittle (corn syrup).
I’ve had four children.
Eating a skittle has never been a bigger deal.
She called her big sister, Harper, specifically, in to witness the event.
And she still wouldn’t chew- only lick.
This month Elizabeth turns three and our journey continues- likely with a lot of food therapy in our future.
Acceptance of new tastes and textures- trusting the foods she has always avoided.
“Nobody knows how the story ends
Live the day, doing what you can
This is only where it began
Nobody knows how the story ends.”
“Nobody Knows” by The Lumineers
First, it’s a bump. A setback. A hinderance.
Then, quite suddenly, a demand for attention.
We explore options. We’re optimistic.
Sure, we stumble, but who doesn’t?
And then,
it’s different.
It’s not a challenge to overcome anymore.
It’s a new way of life.
One we never asked for, nor wanted.
We’re faced with a Dead End.
Or, are we?
We stop. We cry. We lament.
Then we retrace our steps and get our asses back on the
Right. Damn. Track.
Because when faced with a dead end,
Other than dying,
What are we supposed to do?
Live.
We live.
Let me guess,
You didn’t want to, right?
But you had to.
Out of necessity.
Yea, I get it.
I’m that advocate, too.
And, likely, over half of those poor bastards you interact with on a daily basis are in the same spot.
Stuck, but still caring.
Trapped, but still loving.
Cornered, but still exploring options.
Always, continuously, every day.
Caring. Loving. Advocating.
Repeat.
Repeat.
Repeat.
Tired, but Repeat.
Exhausted, but Repeat.
No other options so, Repeat.
Yea, we’re tired.
But you know what else?
We’re resilient as hell.
We can see others differently, in spite of.
We can empathize.
We can offer a hand.
We can endure,
Out of necessity.
New Leaf Parenting 