charlie's song

Trust Without Borders

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Thank you for your prayers.  We have been waiting for the results of both Emma’s and Reid’s mycotoxin testing, and it’s been a comfort to know that thousands of people have been waiting with us.  We have felt not alone…and we are so thankful for you.

Many people have written and said they were praying specifically that Emma’s test would come back at “zero.”  I was praying for the same thing, but I knew deep down that it just wouldn’t be.  There’s just been too many concerning symptoms.  It’s so easy to second guess the things you notice as a mom, but especially after sitting in Emma’s parent-teacher conference yesterday, and talking through the things her teacher has also noticed recently, there’s no way around it…our sweet girl is struggling both physically and neurologically.  Which is exactly what the test revealed yesterday.

There are three different groups of mycotoxins.   We found the same two types of mycotoxins in Emma’s body that were found in mine.  The Triochothecene kind and Ochratoxin A.  This one is especially scary because it’s been linked to liver cancer, organ failure, and reproductive damage.  In Reid, they found only the Triochothecene type, but he had double the amount found in me.  The doctor said that this is often the case…that the one with the highest exposure is not necessarily the one with the most noticeable syptoms.  Some of it could also be that Reid’s body is better at dumping the toxins back out than mine is.  It’s hard to say.

All we know with certainty is that we’ve all been exposed to a dangerously high dose of two different mycotoxins, and that we are all at the beginning of a very long and uncertain journey.  Honestly, the amount of mycotoxins revealed is a little irrelevant at this point.  People who have not been exposed to toxic mold, test zero every time.  But the testing is helpful because it gives us a baseline to work with.  When we are a zero…we are considered toxin free.  That…will be in about five years.  The doctor told us that, besides the lasting organ damage (which is impossible to determine at this point), we should feel like “ourselves” in about five years.

I cannot even tell you how encouraging that news…isn’t.  Sophie is only two.  Which means that in double her lifetime…she will begin to feel like “herself.”  And “herself” happens to be someone she’s never even met…because she’s lived in a toxic house for all but four months of her entire life.  We didn’t even test Sophie because the idea of trying to get a successful urine test out of an un-potty trained two-year-old was simply beyond me at this point.  But testing all of us really isn’t necessary.  We lived in the same house, breathed the same air, endured the same bombardment of neurological toxins day after day after day.  We are all very sick.  We are all going to be on the same militaristic regime of medicine for the coming months and potentially years of our lives.  We are all struggling.

I’ve been trying to think of how best to describe what it felt like to get this news yesterday.  All I keep seeing in my mind is that scene from the beginning of  “The Secret Garden” when those people are sitting around the table eating and talking and laughing.  They have no idea that within a few short hours- they will all die of poisoning.  Every time I see it, everything in me just wants to reach right into the TV and stop the story from happening.  I KNOW.  I know what they don’t.   And knowing is everything.

But in my own life, in my own story…we just didn’t know.

There is only One who did.

And He chose not to tell us.  To not reveal to us that we are all very, very sick.

Until yesterday.

For the last two years we have sat down daily at the table of our own lives and ate, and laughed, and grieved, and played…and all the while we were being poisoned.  Slowly.  Collectively.  Day after day.

There are many emotions flying around in my heart as I struggle to process this.

But the strongest feeling…is relief.  Relief in the finally knowing.  Because as much as I desperately wish, with every fiber of my being, that God had told us sooner, I know that He could have chosen to never reveal this to us.  His sovereignty reigns over the not knowing… and His mercy reigns over the knowing.

A few days after Charlie died I received a very kind, personal email from Pastor John Piper (https://charliessong.wordpress.com/category/a-letter-from-john-piper/).  His words meant so much to me, not just because I deeply respect His commitment to the sovereignty and supremacy of Christ, but also because he has been there.  He has stood beside the grave of a baby whom he had wanted to know and to love and to keep.  His words mean something, because to say them…it truly costs him something.

I feel so very weary of all of the books and blogs about suffering, from people who have never actually suffered.  People who glibly say that God doesn’t “want” our suffering, or that God “didn’t know” what was coming. As if He is sovereign over the cross alone, and that every single moment of life that followed it…every moment meant to point us back to it…well, those are just a crap shoot that He couldn’t see coming.  I know why they say it.  They say it to make people “feel better.”  They say it to make God seem at least “nice”…if not powerful and sovereign and almighty.  And it’s so easy to say that when you’ve never had to wrestle with suffering.  Never had to wrestle with the God who could have stopped it…and didn’t.  Never had to wrestle with verse after verse after verse clearly articulating His deep and constant sovereignty over every single moment, of every single life.

But I have.  And so has Piper.  Which is why I have run over and over again- and especially again this week- to the words he wrote the night after his baby granddaughter died.

“Noel and I lay in bed at about 3 AM after coming home from the delivery thinking: This seems so preventable. By God and by man. Yes. So easy. But neither man nor God prevented this. Man, because he did not know it was happening. God, because he has his wise and loving reasons that we wait to learn with tears and trust.”

With tears and trust.  

I think of these words DAILY.  And they are words that bring meaning to Earth’s long wait.  Waiting to get healthy.  Waiting to meet my babies.  Waiting to know God in ways that still seem far from my realm of understanding.  Waiting for everything broken to be made right.

There were lots of tears yesterday.  Tears as I held a fragile little girl in my arms and told her that she is very sick, and will need to take the yucky medicine for a very long time.  Tears as I left the parent teacher conference and thought about all of those months that our Emma had to fight against her own mind….just to learn how to read and write and add and mulitply.  Tears as I walked into the front door of our house and looked down at shoes that aren’t mine, and a coat that’s not mine, and stood surrounded by a house full of stuff that wasn’t mine…up until very recently.  I miss my old, familiar things.  I miss my hair.  I miss being healthy.

And most of all…I miss my babies.  My head aches.  My liver aches.  My thyroid aches.  But nothing compares to how much my heart aches.  Aches to breaking.  It aches every time I look at Charlie’s picture.  It aches every time I see someone else’s one-year-old baby boy.  And most of all…it aches every time I look down at Emma and Sophie in their matching “mycotoxin-reducing Lucy Pevensie haircuts,” and Freddo is alone…with no matching baby brother by his side.

Yes.  There have been many, many tears.  And we will wait with tears every single day.

But there has also been trust.  Some days it’s faint.  Barley there.  And I mean, barely.

But it’s there.

No matter how fierce these waves of sorrow and suffering.  Somehow, because God remains…faith remains.

I’ve been thinking all week about the worship song called “Oceans.”  I love the line that says, “Spirit lead me where my trust is without borders.  Let me walk upon the waters, wherever you have have called me.” 

He has called me to so many places I never, ever wanted to be.  A place where there are simply no borders left on my faith.  No place where I don’t have to trust Him.  No place where I can coast along trusting in the borders of my own strength.  Every single day…is fight or die.  Fight to trust.  Or die the slow death of unbelief.

I have to trust Him that we were led to every stop we have made on this journey.  I have to trust Him about the three babies buried.  And about the three very sick babies still with me.  About the sickness that ravages each one of our bodies.  About the fear of cancer that still looms daily.  They found a concerning nodule in Reid’s thyroid this week, and four in mine.   Five nodules between us is five too many.  The trust I have put in my Savior and His Sovereignty now has to extend all the way beyond words I never, ever wanted to say.  Still birth.  Miscarriage.  Toxins.  Oncologist.  Loss.  Suffering.

Borders I never wanted to cross.

And yet…God remains.

I struggle so much to trust Him.  But I must.

On one hand, I must trust Him…because He is worthy.

And on the days when my faith feels especially wrecked and weak I actually ask myself, “Do I even really still trust Him with my life?”  I know the answer is, “Well, I must.”  Somewhere, deep inside, I must still trust Him.  I know that I must, because I still long, more than anything…that He would be glorified through this very broken story He has chosen to write.

I long that He would lift Himself up to our kids as they learn to walk with Him in the midst of such a painful childhood story.  I long that He would lift Himself up to the college students we minister to, who get a very up close look at our very messy lives.  I long that He would lift Himself up to you…and that you would know through our lives, when the storms rage and wreck your lives…that you can trust Him deeply.  That it is God who has lead you to each and every storm, and God who will finish the good work He began on the day He first rescued you from the ultimate storm…by saving your very eternal life.

John Piper is right in every way.  It is a long wait.  Filled with tears and trust.

And of both, He is absolutely worthy.

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7 thoughts on “Trust Without Borders

  1. Continuing to pray… For Emma and her Mommy!

  2. God is being glorified, my dear. I have been struggling for quite some time with feelings of depression and extreme anxiety. I have been living in fear for my baby’s life day in and day out to the point that I wake up at night, and go in and check on her. Reading your blog, which I have been glued to since I found your Instagram auction through @takethecannoli, has been such an encouragement to me. In stern ways, painful ways, and beautiful ways. I have cried with you over these last couple weeks, and I don’t even know who you are! It’s not much, but your little blog has grown quite a bit on me, and has truly challenged me spiritually that I have to get my mess together and be GRATEFUL for each day that He chooses to give my darling girl and I. You’re a modern story Job, and He is using you to change my life. It brings to mind that part in The Lorax when the onceler says, “I know it may seem small and insignificant, but it’s not about what it is, it’s about what it can become. That’s not just a seed…anymore than you’re just a boy.”

  3. I have people who say to me, “You have been through what we all fear. You are walking it now.” And they look to me for strength. And I’m just widowed with two young kids. And some more stuff; nothing, NOTHING like what your sweet family has endured, but still, in my circles, it’s been a lot. They see the notebook-full of things God has done and continues to do, and they go back to their struggles with renewed hope.

    Who does God put in front of me to look to for strength? You.

    Praying that healing and purpose that gives lift to your wings will be revealed to you, and fast.

  4. Dearest Misty,
    My family & I are missionaries in Kenya. I’ve shared your story with our kids & we are lifting you & yours before the Lord. I am encouraged through your blog. You are absolutely right that our Lord loves us wholeheartedly, without a shadow of a doubt. He does write our stories & we are powerless as you say, to do anything about the story He writes. But it’s our job to Trust, to read His word so that when we faulter we KNOW He still loves us. To praise Him in the storm. And one day to receive the crown of life & jewels for our crown because we trusted & were faithful to Jesus through such a difficult & challenging life. Continue walking with Him. Thank you for your honesty.
    Praying for you all by name.

  5. I believe that in your sharing of this unique life of yours, you glorify God. You open your heart and show us faith. The strong, yet fragile faith that carries you through from moment to moment. God is is glorified through you and your family. thank you for sharing.

  6. praying for your family daily. praying that you can move closer into the hands of Jesus. Praying that you can lean into Him, hour by hour, day by day.

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