My younger daughter, Ellie, who is now almost 2.5 years old, was diagnosed with Food Protein Induced Enterocolitis Syndrome (FPIES) when she was 6 months old.
Though daunting, Ellie’s FPIES diagnosis – as well as her accompanying ‘oral aversion’ diagnosis – explained so much.
Ellie had struggled with GI symptoms since birth. We had already been on an intensive and extensive journey of food elimination from my diet – since she was nursing – and still, she struggled.
She had many GI symptoms that caused pain, discomfort, aversion to eating, and eventually, cessation of growth. All of her symptoms were explained and clarified through these diagnoses.
Up to this point, I felt I had failed Ellie.
It was what I was eating that was causing her pain, even though I cut out most foods from my diet.
Prior to becoming a mom, I had been a pediatric nurse. Shouldn’t that mean I’m extra qualified to figure out how to make Ellie well? No, sadly it does not mean that. I am still working on really believing that.
I also felt like I had failed her through my lack of faith. If I had strong enough faith, shouldn’t I be able to move a mountain? This mountain? Because these diagnoses felt like a mountain, of the Mt Denali variety.
Mountain Moving Faith
I want to have the kind of faith that carries me through life, knowing God is fully capable and in charge of every situation. I want to place my worries, anxieties, struggles, and trials at His feet and have peace. But instead, I tend to crumple on the floor in a heap of tears under the weight of setback after setback in Ellie’s health journey.
I am currently a member of a Bible study full of wise and wonderful women. They all have stories of their faith to share. Whether it is a physical, mental, or emotional journey they have experienced – or are still experiencing – they all have such strong faith and conviction in the word of God.
I admire these women and their resilient faith.
Why is faith at the foot of a mountain so hard? Why can’t I see the point of my small child suffering despite my fervent prayers? Why haven’t my prayers been answered?
Our Caring Father, God
We have struggled as a family through the last 2.5 years, trying to do our best for her – and praying for healing. I changed my diet significantly – and prayed.
I found and consulted an entire medical team experienced with FPIES – and prayed some more.
All through her hospital stays, tests, and procedures – I prayed.
Every food trial pass, and then eventual fail, that we have endured – I have prayed!
Every time we said no to good things, things that could bring joy, to protect her compromised immune system – I prayed.
Why are my prayers not being answered? Doesn’t God realize how painful it is to see my daughter struggling through nights of pain, and days of not wanting to eat? Doesn’t He care for her?
There is an unmoving answer to those questions.
Of course He cares – God cares even more than I can imagine. He cares even more than me. God understands. Even in my world where I feel like we are drowning alone in the grief of a child suffering, God has been there.
God remembers, every second, the complete sacrifice and death of His own son on the cross for the sake of my own sins. God is well aware of the pain of seeing your own child suffering.
Every day I have to fight my way back to that unmoving answer of God caring. Reclaim that truth so that it doesn’t slip through my fingers. Remind myself that God knows sacrifice so intimately. His was the sacrifice of his Son, not just the sacrifice of sleep, comfort, and food that I have sacrificed for my daughter.
Since God cares about every sparrow and knows every hair on our heads, then God absolutely knows everything about Ellie. He has known her longer than I have, He CREATED her the way she is – goofy personality and all!
“Are not five sparrows sold for two pennies? Yet not one of them is forgotten by God. Indeed, the very hairs of your head are all numbered. Don’t be afraid; you are worth more than many sparrows.”Luke 12:6-7
God’s Perfect Timing, Not Mine
Why are we still suffering through this journey of more setbacks than progress with my daughter? Is it because my faith isn’t strong enough?
“Jesus replied, “I tell you the truth, if you have faith and do not doubt, not only can you do what was done to the fig tree, but also you can say to this mountain, ‘Go, throw yourself into the sea,’ and it will be done. If you believe, you will receive whatever you ask for in prayer.”Matthew 21:18
I am working on my faith, but that is a never-ending journey.
We can always grow in our faith; I know I certainly can. I am a part of this wonderful Bible study group for that purpose – to grow and build my faith. I desire a deeper relationship with God.
However, it is not the size or strength of my faith that creates progress. God is not reliant on me for anything – that includes my growing, but not perfect, faith.
God is sovereign. He has a plan. I can’t even pretend to understand it, or even like it right now. But I can know that He really sees us in our suffering. That He really understands what we are going through.
I was reminded recently by the members of this Bible study that just because God doesn’t answer my prayers within the time frame I expect, doesn’t mean He won’t answer them at all. All things are in God’s timing, and His timing is perfect.
“There is a time for everything, and a season for every-activity under heaven. He has made everything beautiful in its time.“Ecclesiastes 3:1, 11a
The Strengthening Word of God
The doubt I have in my faith not being strong enough to help Ellie doesn’t come from God. He hasn’t told me that I have failed in my belief and abandoned us to suffer out of spite. Those aren’t God’s words being whispered in my ear – allowing for my doubt. Those thoughts come from Satan and his desire to separate us from God.
God’s words never sound like that: full of blame, doubt, failure, and uncertainty.
His words offer guidance, comfort, strength, and yes, warnings and directions, too. God’s word reminds me that everything is done in God’s perfect timing, not mine.
The truth is, I was never handed an itinerary, schedule, or agenda for this life, so what do I know about timing? I DO know I can trust God’s timing.
When I remind myself of God’s perfect timing, it brings to light how God has been with us throughout this journey. Yes, my daughter still struggles, and we are still searching for answers. But He hasn’t abandoned us. He has been right alongside us throughout this journey.
“He tends his flock like a shepherd: He gathers the lambs in his arms and carries them close to his heart; he gently leads those that have young.”Isaiah 40:11
Led by the Shepard
When we were so desperate for answers as to why our daughter was in such discomfort with all her GI symptoms, God provided us with each medical team member one at a time, all of whom are the best in their field for this diagnosis in our region. People seek them out, and yet God placed them right in our path without us realizing it.
This team of professionals was able to diagnose Ellie and give us direction with treatment and a plan.
God knows me and my need for answers and direction, and He gave us the comfort of knowing what to do and how to care for our daughter. He gave us the comfort of knowing we had a team to do this with us. God did not expect me to do this on my own.
When Ellie was no longer growing and still experiencing significant GI issues while nursing, God directed her GI doctor and Registered Dietician to help us find a formula that she could tolerate (a huge challenge with her diagnoses).
This formula, despite it being lower in calories than her size and age would require, has maintained Ellie’s growth at an excellent rate, especially for being fully sustained on formula alone at 2.5 years old. That is God.
When Ellie was hospitalized and had procedures and tests run, God allowed us comfort in the knowledge that so many critical issues were ruled out.
When I was feeling the most isolated and overwhelmed during all of this, God encouraged several people in my life to suggest I start a blog. To share about Ellie’s journey and to combine it with my outlet of baking therapy. I did! Through this blog, I have found several friendships that have been incredibly supportive. This blog has also opened doors to conversations to have with other moms on similar journeys.
God also placed me in this Bible study group, which has allowed me to feel anything but alone. God has worked through them in wonderful ways, the greatest being their prayer support for Ellie and our family. Not to mention the hot meals dropped off at our doorstep. That is absolutely an expression of God’s love.
God has not abandoned us in this journey with our daughter because my faith wasn’t strong enough. God was always alongside us, leading us to the people we needed to see and to the changes we needed to make.
Trusting and Waiting on the Lord
Yes, experiencing the suffering along this journey was (and still is) unbelievably hard. Just because it is hard and hasn’t been resolved doesn’t mean God isn’t working through it all and alongside us.
He is strengthening our faith through our dependence on Him, and He is providing for us along the way. Our job is to continue relying on Him and the knowledge that He is directing our path.
“Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge Him, and he will make your paths straight.”Proverbs 3:5-6
I am not free of all concerns regarding Ellie. I pray that someday I can truly get to that point of having no anxiety or worry because I completely turn it all over to God.
Until I get there, I can take moments of rest in the knowledge that God is in control. He knows all. He cares incomprehensibly. He has a plan, and it will be done in His time.
“Do not be anxious about anything, but in everything by prayer and petition, with thanksgiving present your requests to God.“Philippians 4:6
We are currently in another time of setback with Ellie. Doctors are concerned with her lack of progress and continued setbacks, and other diagnoses are being brought to the table for consideration.
It is hard – and will continue to be hard – to watch Ellie struggle. But God didn’t promise life wouldn’t be hard. He promised to be there with us and bring us closer to Him when we allow.
Then someday – in God’s timing – I will be rejoicing as I hear the words Jesus spoke to the Canaanite woman in Matthew, “Woman, you have great faith! Your request is granted.” And her daughter was healed from that very hour. Matthew 15:23