For the Woman Who is Wrestling with Disappointing Diagnosis

For the Woman Who Is Wrestling with Disappointing Diagnoses
 

RachelMaier

I had expectations about my life. Not dreams, exactly—although I had those too. I’m talking about things I looked forward to with absolute certainty. When I pictured myself as a mother, I almost always saw myself standing at the stove, playfully swatting away eager little fingers snatching still-warm cookies from the counter, my kids’ faces speckled with chocolate and crumbs, a satisfied and mischievous smile twisting their lips. I expected this sort of scene to be a normal, natural part of our home life as much as I expected my children to have perpetually empty tummies I would be tasked to fill. Now here I am, a mom standing in front of the stove just as I thought I would be, but my kitchen and circumstances are far different than I expected, and my attitude toward food has changed forever.

 

Before my kids were diagnosed with food allergies, before gluten and I became enemies before we became a food allergy family, my attitude about food was joyful, and I wholeheartedly believed food was a gift from a good God, meant to nourish, sustain and delight His creation. The notion that food could be dangerous or cause death was nearly unthinkable. My heart went out to families with food allergies, of course, but I expected my own brood to be immune from them.

 

And then, the unthinkable happened one morning when my 11-month-old little girl grabbed my breakfast—a piece of toast smeared with peanut butter—and shoved it in her mouth. My two-year-old tolerated peanut butter with no problem, so letting my youngest little girl munch on a smattering of the stuff didn’t phase me until I noticed the skin around her mouth was red. Upon closer examination, it was splotchy too, and before I knew it her face erupted into an angry cluster of what I now recognize as an allergic reaction. Panicked, I called my husband, who assured me, “Nuh-uh, no way. No kid of mine has a peanut allergy. Her skin is probably just sensitive or something.” When he got home, he set out to prove his theory and put a fingernail-sized scoop of peanut butter on her tongue again. The hives returned and Benadryl mitigated the problem. A scratch test followed, and soon we had the diagnosis that rendered our little girl one of the frightening statistics. Two years later, we welcomed a son who ended up with a food allergy diagnosis as well, this time to milk, casein, sunflower seeds and eggs.

To make matters worse, in the middle of all this my own body was showing signs that something was amiss, and over time I came to understand gluten and I don’t get along. My body reacts in the most repugnant and painful of ways after even the smallest gluten exposure; the stuff wracks my body with searing pain, like road rash on the inside, that quickly spirals out of control. For years, I tried to get to the bottom of the problem, but between misinformation and doubting doctors, ER visit after ER visit and negative test results to boot, no one seemed to believe gluten could possibly be causing the trouble. And so, I lived with the agonizing fear that I was dying a slow, undetected death, and no one would figure it out until I was long gone. 

Eventually, I went to see a new doctor, a specialist who listened like others wouldn’t; ran tests others didn’t; and gave me news that at least made me feel less crazy. He suspected I had an undiagnosed case of Celiac Disease, either that elusive thing called Non-Celiac Gluten Sensitivity. Either way, he urged me to live like I had Celiac Disease and impressed on me the importance of never eating gluten again. Following a colonoscopy, he was also able to diagnose Inflammatory Bowel Disease, and gluten was clearly a major trigger for that condition. Two years later, I was diagnosed with Biliary Dyskinesia, a hard to diagnose a painful condition that causes the gallbladder to malfunction. 

And so, we are a full-fledged food allergy family and my expectations about feeding my family didn’t turn out the way I imagined. Disappointment turned into frustration, and frustration turned into anger that food—that beautiful, good gift from the God I loved—went from delightful to dangerous. It was all a logistical nightmare, of course, and the fear that accompanied every subsequent diagnosis seeped into my heart and twisted it around, tempting me to believe my family had big targets on our backs or rather stomachs, and Someone was aiming to fire. A deep sense of loss plunged me into a dark place indeed. 

I wrestled with the Lord over all this, arguing my case and putting Him on the spot. Your word says the food that you made is good—that it is a gift! Why is your good gift causing so much grief for my family? And why would you create children who are allergic to normal, everyday healthy foods people have eaten for generations? How can you allow a measly old peanut to carry a death sentence for anyone, much less my perfect little cherub of a girl? How can you sit by and watch as my baby boy’s body swells with hot, patchy hives when so much as a drop of milk touches his lips? While we’re at it, why does gluten wreak havoc on my body? If you really made all the food in this Earth, and if it is even half as good as you say it is—if it really is a gift from your heart to ours—then why are food allergies even a thing?

In the deepest, most vulnerable part of my broken heart, I was really asking this: How could you do this to me?

I lived under a cloud of disappointment over the diagnoses, yes—but also, embarrassingly, I was disappointed with God. I felt betrayed, as if my life-long love affair with food had been a ruse, a set up to lure me into believing God was good when in fact, He was just plain mean. How could a good God let such bad things happen to people who love Him?  I wondered how we could have any quality of life when social gatherings suddenly posed a threat to the lives of my children? How would my kids safely go to school? How could I ever trust anyone else to feed them safely? Our world shrunk into the confines of our own little house, the only place we could control the safety of our food allergy family, and I struggled to know what to do about it.

I wrestled with the reality of all this disappointment and the accompanying frustration and fear for a long, long time, crying out to the Lord in the middle of the worst case scenario situations that come with the reality of being a food allergy family. But even as I did so, I felt as though my cries for help bounced off the ceiling of Heaven because surely the Lord would rescue us all from what felt like a death sentence, but instead here we were without healing. My expectations about family life weren’t met, and in the very scary aftermath of facing the grim reality of how going gluten-free and living with food allergies affect our everyday lives, I grieved.

God met me in the middle of my grief and showed me the startling truth that food allergies are a result of His good world gone completely wrong, in much the same way as cancer and murder and selfishness and conceit, theft and diabetes and migraines and addiction are all byproducts of sin making a most unwelcome appearance on His good earth. When the first bad decision was made, when Adam and Eve decided to distrust God's original intent for their lives and instead chose to believe lies lisped from the mouth of the Enemy, things have spiraled out of control (haven’t they?), and we live in the very real aftermath of a world gone completely wrong. No one knows for sure the exact cause for the alarming growth in food allergies, but many have strong opinions (It’s the GMO’s! Pesticides and over-processed food ruin everything! Blame the vaccines! We’re too clean—if we didn’t wash our hands, there would be no allergies!). I imagine many of these theories have quite a bit of truth to them, too. But at the root of it all, if we go back far enough, God’s idyllic ideas for life twisted under the weight of human greed, the effects of which reach all the way into our food system today, and our bodies are paying the price for it. I am certain of this. And while getting to the bottom of the food allergy crisis is admirable, important, necessary work, I suspect the problem won’t be set right until Jesus returns and makes all things new. 

In the meantime, while we wait for that day to come, I live in the tension between disappointment and hope. If you're struggling with a disappointing diagnosis, I imagine you live there too.

I still feel disappointed about it all, it’s true. The reality of our diagnoses threatens to steal our joy and cut our lives short, and that makes life difficult. I still cry about it all sometimes, especially after I have to administer epinephrine to a floppy, swollen little body and wait while my child’s fate is left to the mercy of the Lord. (And by cry, I mean flail and scream and call out to Heaven in sheer desperation and panic. It’s not pretty, I assure you.) But in the middle of even the lowest, hardest moments, God asks me again and again and again to hold on to hope, promising that hope in Him will never ever disappoint me. He won't disappoint you, either.

But how do I actually do that? How do I exchange disappointment for hope? It takes time. It takes practice (I’m still practicing.) It takes acknowledging my disappointments so I can move forward into a new reality or make lasting adjustments to the way we live. It takes realizing that God understands what it feels like to be disappointed and knowing He understands what it feels like to lose a child, so he can relate to the gut-wrenching feeling that washes over me when my own kids fight for their lives. It takes looking the alternative—that God is an unmerciful, detached meanie who couldn’t care less about my pain—squarely in the eye and deciding to believe He is who He says He is, and He loves me and cares about my life even though my circumstances tempt me toward believing otherwise. I know now in a very real sense what Jesus meant when he said man cannot live by bread alone, but on every word that comes out of the mouth of God (Matthew 4:4), and over time I let the promises of God fill me up in a transformative, life-giving way. 

I still let myself cry when the pain of our reality peaks, but now I cry out to the God who promises my hope in him will not lead to disappointment (Romans 5:4-5). I experience the truth that the Lord is near to the brokenhearted (Psalm 34:18). I trust that God will always give us the food that we need (Matthew 6:25-34). I know the Lord redeems our suffering and turns it into something valuable and lasting (1 Peter 5:10). I know my disappointment over food allergies and sickness and diagnosis after frustrating diagnosis is not God’s fault, and now I grieve with Him that His good world went so horribly bad. And I am full of hope and anticipation for the day that He will make everything right again when death and disease and sadness and fear and all the stuff that makes life on Earth so painful dissolves as the beauty of His holiness restores wholeness and health to all creation. 

 

***Watch Rachel and I's live interview on Instagram on this topic below***

 

Ashley JacksonComment