{God’s Story} How I’m Learning to Trust God through Celiac Disease

Oct 28, 2015

Trusting God

When Tara first asked me to share a story, I really wanted to share a finished one. I’m sure you know the feeling. Everyone loves a nice story, that is not only encouraging and inspiring, but begins and ends definitely and has all the question marks neatly wrapped up. The problem with sharing a finished story, however, is that the most significant stories in my life right now are still waiting to be wrapped up. That does not, however, negate the fact that God has been teaching me powerful, convicting, compassionate, and merciful lessons every single day.

One yet-to-be-wrapped-up story in my life (and surely the one to which I’ve devoted the most of my attention) is the story of my son, Joshua, and his impact on my whole family’s health. Joshua is almost 5 years old, has textbook (though unofficial) Celiac Disease and what now amounts to about 20 food allergies, and is somewhere on the high functioning end of the Autism Spectrum. Because of this, and what seems very likely to be Celiac Disease in my husband, my family embarked on a healing diet (the GAPS Diet) which takes most people about 2 years, but takes some 5-7. We are on year three.

We are here on year three and yet, while we see many little signs of healing in Joshua every day, not one of his allergies has been officially healed or reversed, yet. My husband has had 3 allergies reversed, and I’ve had a few discovered and now am en route to healing. Our baby girl was born a year into this protocol and she has only one allergy that we know of. That is actually a huge sign that we have benefited from this way of life.

Other signs are the fact that, while on paper his seasonal allergies are still off the charts, we have been enduring one of the worst allergy seasons on record and he has had barely a sniffle. My husband, daughter, and myself all caught a nasty respiratory bug and Mr. Immune Compromised again escaped unscathed. Clearly, healing is taking place. Three years ago, my poor little man would had a faucet for a nose from February until November, and had gotten a few chest infections as a result. This year he had a few sniffles, but no long-term congestion and no scary, wheezy, I-don’t-want-to-let-him-go-to-sleep breathing.

But the food allergies that stop my heart every time another child with food lurches toward my son, those are still present.

We work very hard, though, to keep him safe, and by Christmas 2014, it had been a good long while since he’d had an allergic reaction. And then we went to church.

It was actually the Sunday before Christmas, and our church was doing the big Christmas production we’d all been planning. I was getting ready to sing, while my husband cared for our two little monkeys in the fellowship hall. He was changing Joshua’s diaper on the floor, when something made its way onto Joshua’s hand. We still aren’t 100% sure, but our best guess given the circumstances was that it was a corn-containing face paint that some of the dancers use.

He rubbed his eyes.

I was finishing my song when I looked up to see my husband at the back of the sanctuary and his “try not to look worried” face. I could tell that something was wrong with Joshua, so as soon as I finished I hurried up the side of the room to where he was in the back. Joshua’s face was puffed up like a balloon.

We later learned that this would have been the perfect time to give him his Epi-pen Jr. Before you start wondering how we couldn’t know, when you’ve never had to use it the line seems to be very thin. I have since learned that the rule of thumb is that a reaction involves two or more systems. He was swelling AND having trouble breathing. This means it’s an Epi-pen moment.

We didn’t know that at the time, though, so my husband informed me that he had given him a double dose of his specially compounded Benadryl, so that sent me worrying on the other end of things, that we had possibly over-medicated him. We all went back to the fellowship hall and waited to see if more urgent care was needed.

The swelling was coming down. His breathing improved. He ate some of his “ice cream” that we bring with us most Sundays. I started to calm down from crisis-intervention-mode. And that’s when I started to feel angry. Why was this even still an issue?

Angry might be too strong a word. Honestly, I was feeling pretty desperate. Desperate and frustrated. We decided that the best thing to do was to leave church early and keep an eye on him at home, where we knew there was less of a chance of a second contamination. And as I loaded the car, I had some words with God.

“God, I really just don’t understand. You said, ‘Walk out your healing,’ and that’s what we’ve been doing…But where is the healing??? Why is he still having these reactions? I need something, God. I need to hear from You. I need to understand.”

The heavens were pretty silent as we got the kids into the car, and honestly, my heart felt heavy like it hasn’t in a long time. Once home, we got the kids inside, and let Joshua curl up in his daddy’s easy chair, where we could keep an eye on him but he would be comfortable. The swelling was slowly but surely coming down, but the poor kid was wiped out from the Benadryl. He looked pretty awful.

Suddenly, I remembered a word that someone had received as they prayed for us, a couple years ago. They told me to sing. Sing around the house. Sing Joshua’s healing. Sing, sing, sing. And I started singing the very simple but powerful chorus, “Break Every Chain.”

If you are unfamiliar, the lyrics say,

There is power in the Name of Jesus

There is power in the Name of Jesus

There is power in the Name of Jesus

To break every chain, break every chain, break every chain

 

There’s an army rising up.

There’s an army rising up.

There’s an army rising up,

To break every chain, break every chain, break every chain

 

I hear those chains falling (repeat) (Break Every Chain, lyrics and music by Will Reagan and the United Pursuit Band 2009)

When I got to the part where I was loudly declaring over him, “I hear those chains falling!” And my sweet baby boy took my breath away. From his curled up position on that chair, he sat up and raised up both his hands. He just began to yell out very long yeses. Five times he yelled, “Yes!” and I just stood there, amazed. I was crying, and I said, “Joshua, did you just say, ‘Yes?’” He said that he had and I just allowed that bewilderment to wear off a little so I could think of what should come next. Aside: I feel compelled to point out that the way he responded is not something we see frequently at church or do around our own home, even. It was not a learned behavior.

I started to sing Break Every Chain, again, and he said, “No, not this one. Sing, ‘Because I’m happy…’”

Now I was amazed and convicted. Even my little (then) 4 year old knew when it was time to stop pleading and start praising. He was still looking pretty rough. He was still exhausted. But he had broken through to God while I worshiped over him, and now he knew it was time to rest in what God was doing.

God spoke to me through my son, that afternoon; through his willingness to just surrender himself in the middle of horrific circumstances, and through the grace and the strength he was leaning on. What God ministered to me in that moment was this: “I know you don’t understand what’s going on right now, but you can know that I am in control. I know this hurts you and scares you, so remember this. As much as you love and care for that little boy, as much as you would give your life for him, I love him even more than you ever could. And I love my own Son more than you could ever care for Joshua. I love Him, and I endured His suffering, all so I could bring you close to me. What you’re going through right now is a teeny, tiny glimpse of what I went through for you.”

He doesn’t magically “disappear” every trial and hard circumstance in our lives. We don’t get an easy button, and we were never promised one. But we were promised that God would be in every moment of every trial. He is right there with us, and He is deserving of praise, even when we don’t have the outcome we are praying for. {Tweet that!} And He is holding us so close, so tightly. He is weeping with us when we weep, and rejoicing over us when we rejoice. He is near.

Joshua still has allergies. Physiologically, there are a few different puzzle pieces that we’re working on to help optimize his health. His sensory issues have limited his diet even beyond his allergies, because he struggles with different textures. So some of the important healing foods on our diet, he won’t touch. We’re waiting for an opening in the therapeutic feeding program into which he’s been accepted. Then we can start working in some of the healing foods that he no longer eats, which will help jump start that healing. We’re looking at some other options, too. But, as much as those things matter, they don’t matter to this moment, this lesson. What matters is simply this: God is near. He is with us. He loves us. And no matter what our circumstances look like, that will never change. {Click to Tweet!}

Melody Joy is a friend I met through OverACup’s online Bible study group several years ago. She is one of my favorite people I’ve never met. Her heart for God and her insights into His word have taught me so much over the last few years. I pray you have been blessed as she shares her heart with you today. 

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4 Comments

  1. Terri Wilson

    Just what I needed ?

  2. Doris Swift

    Melody Joy, what a beautiful story of trust in God. So true how He holds us close, even in the trials we face. Thank you for sharing with us, and I am sharing it too! Something we all need to hear.

    • Melody Joy

      Thank you, Doris! I’m glad it blessed you!

  3. Mandy Couch

    So needed this today!

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