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.
Lately, bedtime at our house has been a scene of chaos.
Commands of “Brush your teeth! Get your jammies on! Go potty!” are blatantly ignored, while my and my husband’s patience are next to nil.
The littles go on the offense: running around the house, slamming their legs down repeatedly on their beds as if they are mermaid tails or tossing stuffed animals back and forth all while incessantly giggling.
This would be funny if it weren’t 9 PM and their parents weren’t desperate for a moment of peace and quiet.
But it is and we are.
Threats of no treats are empty, worthless ammo, so last week, I spent an hour reading articles about bedtime routines.
I have to admit, since this isn’t my first time at the rodeo, I felt a little foolish having to research something I feel I should have nailed down. For a time, I did but with the addition of each daughter, the loss of control has humbled me.
Upon reflection, I recognized that if I want my children to be calm, I, too, must model the same behavior.
Like most things, when it comes to solving problems, the change begins with me.
My days are spent in constant motion. Even when they are at school, I am cramming in chores, particularly those which are easier without their presence like grocery shopping and laundry. Throw in after-school activities, dinner-time and homework and next thing you know, it’s time to get the kids ready for bed.
There’s very little time to wind down, for all of us.
So, I asked myself: “How can I make them look forward to bedtime?” Instead of this battle of wills, how can I get them to buy in?
Enter this article by Nurture and Thrive and this one by Picklebums. Their suggestions include lullabies and massages, something I used to do when they were babies but have since stopped.
I approached that same evening with a zen-like calmness rivaled only by Buddha himself.
Instead of yelling at her to brush her teeth, I grabbed her hand and gently led her to the bathroom to begin the process. Instead of picking up her room as fast as possible while tossing her the jammies, I sat down on the floor and helped her put them on. I read her books, as usual, and stayed on the edge of the bed to sing a lullaby while scratching her back. I then repeated this to some degree for three more children. . . .
It seems like it would take longer but in actuality, my children were left calm and relaxed and thus, for the love of all that is holy, stayed put.
Thank you Jesus and internet blogs.
Slower motions. Lower frequencies. Tiny changes make the biggest difference.