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.
The water is wide
I cannot cross o’er
And neither have I wings to fly
build me a boat that can carry two
and both shall row my child and I
I’ve been singing this lullaby, from the “Triangle Collection” by Music Together, to my two-year-old for weeks now. It’s a beautiful tune, but the meaning of the words didn’t resonate with me until I sang it to my middle daughter last week, consoling her over the loss of her beloved pacifier.
She’s four, two years older than I swore I would ever allow a child of mine to use a pacifier. We’ve gradually diminished its presence – from the stroller, car, and now only to be used at night. She desperately wanted to nap this past week, but found herself unable to without it. I, currently 7 months pregnant, wanted to sleep, too and yet found myself lain beside her in her twin bed singing the song over and over.
The wide water represents sleep without her comfort object. I, acting as her boat, was helping her to cross. I reminded her that she was not alone in her journey, that I would walk beside her to overcome her attachment.
And that reminded me of the poem, Footprints in the Sand, in which author Mary Stevenson suggests that Jesus carries us through our most difficult times.
Last year, I would have been resistant to such a notion- allowing Jesus Christ to carry me. Always questioning, suspicious and doubtful, never fully trusting his intentions or the doctrines describing his life and purpose. Skepticism and all, I trudged forward, watching sermons from Trinity Church online and reading books such as Jesus Calling, Relax, It’s Just God, The God Girl Journey, and Mere Christianity.
The Sicilian, Taurean, stubborn part-of-me constantly challenges every word I read or hear, but the more I learn, the more I find myself reconsidering my staunch resistance. Whereas “softening” used to be synonymous with “weakening”, I now feel the strength that comes from opening my heart and mind to allowing Jesus to lead.
I was always searching for someone to explain to me how to get there. Surrounded by believers, church was too intimidating. The bible, too overwhelming. It seemed you were either a believer or you weren’t and I felt lost in the middle.
Randy Singer’s sermons and these books became my boat, leading me across the great distance that separated me from Christianity. Like most things in life, they did not fall into my lap. Amidst all of my doubt, I continued to search and seek, gaining courage along the way.
I realize now that this journey will last my lifetime but oh, how much richer my life already feels. I have so much more truth to uncover and to expose my children to but finally, “the peace of God, which surpasses all understanding” Philippians 4:7 is mine to behold.
Jesus once was a man I misunderstood, but has gradually become the man I seek to carry me across the great divide.
“Ask and it will be given to you; seek and you will find; knock and the door will be opened to you.” – Matthew 7:7
Fumes. That is what my energy tank is running on. It’s not just today, this week or even this year. I’ve been pregnant, breastfeeding and waking up every single night with young children for over 5 years now and I’m spent. This is just my story but there are so many others who are also exhausted for different reasons: A chronic illness, a divorce, work, poverty, stress or athletic training. At some point, we all feel tired so where do we find the energy to soldier on?
The answer is: Each other. We lean on one another. Tonight, when my children wouldn’t go to bed, my husband took them from me, recognizing my exhaustion level. Other nights it is reversed but the bottom line is we lean on each other. When he is not home, a phone call to a friend sometime suffices- they encourage me, make me laugh and tell me to quit whining and get back to work. We were not meant to live this life in solitude. However scared we may feel by sharing our weakness with someone else, we must do so in order to find the strength to carry on.
Sometimes it’s tough to trust someone else with our feelings, particularly when others from our past have let us down. But we must recognize that when we fail to try again, we are allowing fear to dictate our well-being. When we live in fear we are not living as our authentic selves and that is supremely exhausting in and of itself.
In the back of my mind, I know there is someone I have neglected to trust for fear of being duped, fooled, and let down. I can trace the root of my apprehensiveness to my childhood but at what point do I make peace with this and stop allowing it to define my present and future? I keep waiting to feel “ready” as if it is going to resolve itself. Deep down, though, I know progress is not made for those who wait. It is made for those who seek. They seek treatment, forgiveness, peace, stability, courage, and improvement. They seek hope.
I don’t feel “ready” but I feel exhausted and in my heart, I know what is missing above all else. As much as I try to rationalize, dismiss and avoid, I know I am missing a relationship with my God. I fear He doesn’t exist. I fear putting my faith into something that isn’t there just to make myself feel better. I fear being let down. And yet, every. single. time. I have attended the church I grew to love last year, I left service feeling uplifted. I felt hope. I felt amazing clarity. I felt humbled and I felt an immense amount of love and kindness surrounding me.
I’m running on empty and its because I have failed to fill my tank with the one Being whose energy and love has no bounds: my God.
We weren’t meant to do this alone. We look to each other but above all else, we look to our Creator for there is no one in this great, big world that knows what we need more than Him.
I kneel down. I ask for forgiveness in thinking I could do this on my own. I ask you to hold my hand. Fill me with gratitude and grant me the energy to carry on. In your name, I pray.
New Leaf Parenting 