charlie's song

Fountain Drinks

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Exactly five months ago today we found out that toxic black mold was slowly and systematically destroying our bodies.  Five months ago today marks the last day of our season of not knowing and it also marks the first day of this season of knowing.  

Both were miserable, each in their own way.  But I think the hardest part…was the day in between. Finally, we knew. We knew why we were so incredibly sick. We knew why our precious Charlie’s perfectly healthy body died inside of mine. We knew why we continued to experience loss upon loss.

But we also suddenly sat in the overwhelming knowing…of knowing that we couldn’t keep any of our things from our old lives.  Because we also now knew that everything we owned was continuing to poison our bodies.

We were neither Here…where we are now. Nor there…in that former land of Unknowing. And as miserable as There was, at least it was familiar. And I longed for anything familiar at that point.

I’d like to say that five months ago today I was full of faith and hope in the God who had finally had mercy on us and told us why.  But I wasn’t.

I was a wreck.  On multiple levels.  I was so incredibly sick that I could barely walk…let alone rent a U-haul, and make the four-hour pilgrimage to the nearest Ikea to buy a whole new life.

But by this point, our kids had already spent two weeks sleeping on the floor of our new house, and we needed to buy them beds.  And sheets.  And pillows. And Ikea puppies.  They had just found out they they could no longer keep a single thing they had owned in the only life they’d ever known….surely they needed at least one Ikea puppy.

It took about five minutes of Ikea to seriously question if it was worth the trip for those puppies.  It was a long day at Ikea.  Ikea’s hard to take on a good day. But a crazy-busy, packed-out Ikea on a rainy Sunday afternoon, with a body that was completely wrecked and three very weary kids…well, that’s like an Ikea torture chamber.  By the time we left Ikea, I was a puddle of misery. I was exhausted, and hungry, and totally overwhelmed that we had just had to buy a new couch, and a new feather duster, and a new tea kettle, and a new…everything.

And I was limping physically.  I couldn’t breathe because of the infection in my lungs.  I couldn’t think because of the mycotoxins ravaging my brain.  I couldn’t even walk because of the inflammation in my legs.

And worst of all by far…I was limping spiritually.  I couldn’t even pray my heart hurt so badly.  WHERE ARE YOU GOD!?  We have just spent the last of our life saving’s buying a couple of things at Ikea…how are we going to pay for an entirely new life?   We have six doctor appointments lined up…and we’ve already given all that we had left to the fourteen doctors before this.. I kept looking back at the three little buddles knocked out from exhaustion in the back seat, and thinking, How are we ever going to provide for these precious lives?

Wherever He was...I was quite certain God was a million miles from wherever we were.  And as we drove home from Ikea, I started to weep.  Weeping for my lost babies who died because of a house.  Weeping because of the three babies He had kept in our care who needed new socks and new toothbrushes and new blankies, and I had no idea how we were going to give them all of those things. Weeping because I had absolutely nothing left to give on this horrific journey through suffering…and we were actually not at the end of it, but had rather just turned the corner into a whole new valley.

Picture Katniss Everdeen the moment she found out she had to go back into the Arena.  Minus the booze.  That…was me.

And if there is one thing I have learned on this endless journey of suffering…it’s that you do NOT get a break from the lies and the fears and the struggles and insecurities you have always carried…just because you’re suffering.  They come along for the ride.

And for the most part…they just intensify.  It felt like every lie I’ve ever heard and believed about the Lord’s lack of love and care for our family poured down on my heart during that long drive home from Ikea that night.  He doesn’t see how much we are hurting.  He doesn’t see our suffering.  He doesn’t love us as much as all of the people whose lives He has made so ridiculously easy.  He doesn’t hear my endless cries for mercy.  He doesn’t even SEE.  

Picture Hagar the moment she landed in the desert and sent Ishamel off to die. Minus the empty water jug.  That…was me.

On our way home from Ikea we stopped at Chipotle to get something to eat.  I felt far more like eating dust and ash…than a burrito, but I’m sure even Job eventually had to eat.  I ordered my water cup, paid for my burrito, and walked away.

And somewhere between that moment at the register and the moment I reached the soda fountain…something deep snapped in me.  I.  Had.  Had.  It.  I was tired of being the people God forgot about.  I was tired of being the family who lived in a cemetery.  And an oncologist office.  And now a forced trip to Ikea because we could no longer keep a single thing from our old life.  I was tired of being forced to walk into places of pain that I had never, ever wanted to go.  And I was really tired of trusting God to provide, and only losing more and more with each new twist in the journey.  And I lost it.

In a totally climactic moment of defiance, I walked right up to that soda fountain dispenser with my plastic water cup…and I poured myself a Coke.  I’ve never done something like this.  But I wanted a Coke.  And I was too tired and weary and broken to go back and pay for it.  A part of me didn’t want to anyways.  Because I just didn’t care anymore about, well, anything.  I peeked over my shoulder thinking the Fountain Drink Police might take me down right then and there.  But nope.   Nothing.  I had pulled off an uncharacteristic fountain Coke heist.  And.  I.  Didn’t.  Care.

As you read this, one of two things are probably going through your mind. You’re either 1)  Totally appalled that I would do such a thing, and even more appalled that I would confess such a grave transgression in such a public place. Or 2) Rolling your eyes, because in the grand scheme of things…what’s a $1.60 Chipotle drink?  And which camp you’re in is probably more of an indication of your heart in this moment, than mine in that one.

The point…is that as I stood there in that moment in Chipotle I finally admitted that I no longer believed that God would take care of me.  I no longer believed that He saw and cared how broken my body was.  How broken our hearts where.  How literally broke our family was.  And how completely shattered our hope had become.

The bottom line…is that I no longer believed His love.  And I was so convinced that we could no longer trust Him to love us and care for us and provide for our needs…that I was going to take matters into my own hands.  One Chipotle drink at a time.

Two days later, I wrote a blog post to our friends.  I had finally had enough time to wrap my mind around the reality of our incredibly difficult situation and the mountain that loomed before us, and I felt so desperate for prayer.  So incredibly desperate that I didn’t even care if I was asking people to talk to the God I was barely speaking to.  I needed them to talk to Him anyways.

Picture that father broken and weary, crying out on behalf of his hurting son, “I believe, but help my unbelief!”  (Emphasis on the unbelief.)  That…was me.

I wrote that blog entry.  And headed to the oncologist.

And the rest, as they say…is history.

I had no idea that thousands upon thousands of total strangers were about to read this blog.  And I really had no idea that those same strangers were about to respond by giving of their time, their treasures, and their talents…so that God might literally help our unbelief.  But that is exactly what happened. One miracle at a time.

Five months later, I wish I could say that my faith was surging…just like I wish I could say that my stack of “Thank You’s” was dwindling.  But it’s not.  I have had lots of time on my hands this summer, but I have been so incredibly sick that I haven’t gotten to the 1,300 “Thank You’s” I have wanted to write.  I don’t feel obligated to do it.  Believe me, I am WAY past obligations these days.

But I have genuinely wanted to write those notes…so deep is our gratitude for each and every person who has loved on our family during these last five months of life.  It’s probably not going to happen.  I have really struggled to find 1,300 total strangers addresses anyways.  But I really want you to know my heart.

Because I know my heart.  I know how deeply weary I had become by the time I got to that moment in Chipotle.  I know how many lies about the Lord and His love I was actually hearing and truly believing.  My heart needed God to speak.

And He did.  With the voice of His body.  Each and every one of you.  He spoke to us of His great provision in the face of the greatest need of our lives.

And He continues to speak.

A few weeks ago I experienced my most terrifying neurological symptom to date.  I was inadvertently reexposed to mycotoxins this summer while we were traveling, and was struck with a horrible case of neuropathy. Neuropathy is a common symptom of toxic mold posioning, but one that is totally new to me.  It is also terrifying. The toxins begin to attack your central nervous system, and you slowly watch your nerves begin to shut down.

First, it was the nerves in my legs and toes.  I could move them, but I could no longer feel them.  Then it was my arms and hands.  I could no longer pick up a fork.

And then it was my face.  It eventually got to the point where I could no longer read the kids their bedtime stories because my words would slur together like I had just had a stroke. I felt immobilized and unable to speak, and then my vision started to blur.  It. Was. Terrifying.  And there have been so many moments of despair and panic.

And as I watched my body literally shutting down, any doubts that I had harbored about the serious effects of toxic mold poisoning completely left me. People have experienced permanent nerve damage from these toxins. People have even gone blind. And suddenly I found myself in a place that made that horrible Ikea trip look like a Sunday picnic.

Will I be paralyzed by the end of this journey? Am I going to go blind?  Am I no longer going to be able to speak or read stories to my precious babies?  Does God even care how scared I am?  Where ARE you God?!  Do.  You.  Even.  SEE?

And I found myself back there again.  Back in the place I had been five months ago that long night in Chipotle.  Terrified.  Overwhelmed.  And believing so very many lies.

And in that moment, in that incredibly dark and scary and lonely moment…we got a text from our friends saying that they’d finished the “Thank You” video they had offered to make for our family.

They had started it months ago…but of course that day was the day it was finished.  And as I watched the video I was struck all over again by the incredible journey God took our family on this Spring.  The journey of seeing His response to our great need.  His response to all of the fears and lies and overwhelm we have had to face every day on this long road of suffering. His response then…to the things we still face daily.

What we have been through is not just horrific…it is also incredibly lonely.  I don’t know a single soul who has endured the loss of a full term, healthy baby boy, and then the loss of two subsequent pregnancies, and then the loss of health, and then the threat of cancer and organ damage, and then the loss of every book, every sock, every picture, every… everything.

It’s our story.  And it’s honestly so lonely that it’s only our story.  There is no one I can look to who has been through all of this…and survived.  And more importantly, no one I can look to who has been through these exact sorrows…and whose faith has survived.  On the worst days I wish there was…simply so I knew it could be done.

But isn’t that true for all of us?  No one, not one person in all the world…has your exact story either.  No one has had your exact challenges, your sorrows, your moments of terror, your battle with Satan’s lies…or your exact joys.

And that too, can be incredibly lonely.

But perhaps the greatest thing I have learned over the last five months is that all we can really offer one another, we whose stories are as beautiful and cold and unique as that proverbial frozen snowflake, is moments like the one you gave our family a little less than five months ago this week.

And all the moments since then where your love has reminded us that we are not alone.  That you are with us.  That you do see our pain.

And even more…that God is with us.  That God does see.  That God does rise up and fight for our broken, aching, deeply weary family.  And that God does provide.  And not just books and socks and new family pictures…but the faith and hope and love that we need to make it through this very long life.

Thank you to our friends Andre and Charles for all of the love and time you spent on this incredibly thoughtful video.

For all of you whose addresses I will never be able to find…please accept this video as our deepest, though insufficent thanks.

Thank you to each one of you, for being such a tangible reminder of the Lord and His provision and love over these last five months of our lives.

We are not home.  But we are slowly moving on a journey towards there.  And we are still, by the grace of God, deeply longing to get there and eager to see His face.

With love, the Zeller family

<p><a href=”http://vimeo.com/97899302″>zeller project</a> from <a href=”http://vimeo.com/user5426652″>Charles Rumble</a> on <a href=”https://vimeo.com”>Vimeo</a&gt;.</p>

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24 thoughts on “Fountain Drinks

  1. You. Are. A M A Z I NG.😍

  2. Thank you. Your story is so hard to read, and yet you keep bringing it back to the Savior who gave his LIFE for me. And while I know that you might rather not be the example of His steadfastness, He CHOSE you because he created you and knew that He had a purpose for you. Your articulation of your suffering and His constant care keep me going on the days that seem too dark, too hard to keep moving through. Praying for you. (And the video is amazing!)

  3. Your video reminds me of a Chris Tomlin song “How Great is Our God”. The splendor of the King spread so generously over you and your family. I pray that you will never grow weary of waiting on HIS perfect timing and HIS perfect plan for you. We love you guys!

  4. I want to let you know that your story touched me today. This post was passed on by a mutual friend, because I just posted today, too, and mine that started with “Two years ago today…”. She didn’t know if reading your story would be a good thing to my heart today or not – but it was. I laughed. “I’m WAY past obligations these days.” Been there. Am there. And I wept. Lies about God I thought I had guarded against were found to have roots all tangled through my prayer life, my marriage, and view of Him. It’s been pretty messy as I oh-so-slowly sift through that soil picking at the pieces and examining whether it’s a good root – or one that needs to be thoroughly cast away. Thank you for sharing your heart and your journey. The world needs more real, transparent relationships with the creator God and His sacrificial Son.

  5. Stunning, completely moving video. Your family is beautiful, and God is using you in such big ways.

  6. Prayers coming your way from Connecticut. I’ve been following your blog since this spring…my heart is broken for you. May God heal your broken hearts and your broken lives.

    >

  7. Oh, Mist. This is so beautiful. I loved hearing your voices and seeing you all interacting with each other. I wept as you bravely shared again the pain and sorrow of losing Charlie, and the sorrows that kept coming. Your lives display God’s love, grace, truth, provision, and joy, even though you are so bruised and weary. Thank you for sharing. Praying for you and love you all.

  8. I was so happy to see your faces appear on my Instagram the other day and to read your words again. I wanted to shout, “see? I didn’t forget!” I have continued to pray for your family. For sweet little Emma. While our struggles are not at all similar, I too have facedmtimes of feeling alone. There are things no one else can understand. You are a wonderful steward of your story.

  9. My heart hurts for you and your family. May our God of love comfort and heal you.

  10. I am amazed at your determination and faith. We lost our son 8 days after birth due to injury during his birth (made by the hospital – who has been held accountable). Since then, I also suffered 3 miscarriages and then an emergency operation at the same hospital for a cyst. Our son’s death was just the beginning of our suffering also…and yet there has been beauty in the story. We also do our best to make something wonderful from this time, but it is difficult. Now, we wait patiently in hopes that we will adopt from Kenya, but nothing in life is guaranteed. Through all this, I must say that my faith has escaped me. I am not where you are. I am not able to simply trust God, man, life… But I continue to read in hopes that I will find some peace in your journey and ours. You are never alone.

  11. Weeping and praying with much love.

  12. thank you zellers for sharing this update. praying for continued grace and hope, strengthening and perseverance, patience and courage. God will not only sustain you but will renew you, poco a poco (as we say in Spain.) To God be the glory!

  13. He sees you… oh, He sees you… and I see Him in you.

  14. Your journey has been a difficult one to follow and read. I have spent time and time again in tears over the truth you have spoken, not only about your suffering, but over the truth of God’s goodness and faithfulness. Thank you for writing and processing with the public. It has inspired me and only drew me closer to God.

  15. This post immediately reminded me of Chris Tomlin’s All My Fountains…5 months later my family is still praying for yours.

  16. Other people have far more eloquently said what’s in my heart for all of you. I continue to pray for you all – blessing, healing, resolution of the symptoms and restoration of all that’s been stolen. I ready your blogs through tears….so wishing I could help relieve some of the pain and suffering, but so grateful to be able to walk this out alongside of all of you through prayer. Thank you for the privilege of seeing your heart, your struggles, your transparency, your pain, your vulnerability. Love you.

  17. Thank you for the update. I’ve been anxious to hear from your heart again! We are going through our own journey with mold and chronic pain, and so much of what you say speaks to my heart. Keep writing, please! Praying that God sends you complete healing.

  18. Reblogged this on Egcho and commented:
    I love love love this blog.

  19. Misty, you touch us. God does through you. Your precious, fragile faith that Jesus himself is praying will not fail. Much love, Elizabeth McKinney

  20. I loved your video–I periodically check in on your blog, hoping for good news! I think of you often. Please continue to update us on your journey. Prayers.

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