charlie's song


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My Life on the Tea Cups

It began on January 27th 2013.  Baby Charlie had spent 37 weeks tucked beside me in my womb, and we were all so very excited to meet him in a few short weeks.  Every time two-year-old Freddo would put on his little soccer shoes he’d say to me, “Mommy, these are getting too small…soon I’m going to have to give them to Baby Charlie!”  

Anticipation was high.  And life was full of beauty.  At the time though, I thought life was actually pretty challenging.  I had three kids under six and one in my tummy…and I was exhausted beyond belief.  But I was full happy.  Life felt overwhelming and tiring and full. Full of diapers and runny noses.  Full of jelly hands and lots and lots of Why’s.  But also full of so very much hope and joy.  And we were truly happy. Eagerly awaiting, with full intention of receiving, our “new” life as SIX…with the baby boy whose tiny feet would fill big brother shoes any day.

But that day, that very day…I would meet those tiny feet.  I would hold them in my hands.  I would finally hold his perfectly formed little body, with ten small fingers and ten small toes, and the ten million big dreams I’d held for his life.  But his heart would not be beating.  And I would be forced to look down in total despair…at his perfectly formed little feet, and cheeks, and button nose…and eyes I would never, ever see.

And it would be…the worst day of my life.

The beginning of our new life.

A life I hate.

There are still, a few very precious things I love about my life.  But I absolutely hate that my baby boy lives in the ground, while everyone else’s children are running around above the ground…full of love and laughter and life.  I know in my heart that who Charlie really is…my eternal Charlie…is running around in heaven.  I know in my heart that Jesus really did turn to the thief on the cross and say to him ever so softly, “Today, you will be in Paradise with me.”  And I know that when Jesus says, “today”…He means today.  know these things.

But Jesus didn’t say all of that to the thieves’ broken Mommy, who stood there weeping next to Mary.  And He didn’t say it to me.  I am not in Paradise today.  I am stuck here in this broken world, trapped in a broken body, and my sweet baby’s life is being lived…ten million miles away from mine.

Charlie’s real life, his Forever life, gives me hope.  Real, lasting, living hope. But it isn’t my life.  It isn’t by me.  And right now, it isn’t with mine.  And the moment the doctor turned to me with tears and said, “I’m sorry, your baby is gone,” Charlie went to one place in my mind and heart, and I went to another…my new, horrible life.

This may all sound dramatic.  I’m actually struggling to find words strong enough to communicate what it is actually like.  And the only thing that’s coming to mind right now…are the Tea Cups.  Yes, those miniature Disneyland torture chambers that spin feverishly around for all good people willing to wait in an hour-long line.  The last time I went to Disneyland, I had to ride those devilish tea cups not once, but twice with my beloved little glories.  The second time, I took a picture of the blessed event.  Mostly, to show my husband (who absolutely refuses to ride the tea cups) exactly all that I was enduring for the family.  But I also took a picture of that blurry sky because I was struck cold…by how much it reminds me of my life.  

Glaring, blinding lights.  Swirling, sickening, spinning.  And absolutely no end in sight.

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Most people who suffer from a serious chronic illness, could probably share the exact moment they found out about their “new life” of sickness and pain.  For some, it was in a doctor’s office.  For others, it was the moment they fell, or the moment they blacked out, or the moment the doctor called back with the bad-news test results, for which they had been anxiously waiting.  For me…it was a dark, cold, lonely hospital room on January 27th, 2013.  It was four green walls, in bad fluorescent lighting…where I sat utterly alone and listened to the doctor explain that somehow my perfectly formed, 5 lb 10 oz baby boy had suddenly and unexpectedly died in my body.

And that first moment of knowing that Charlie had died…was the moment the tea cups started spinning.  And the moment they start spinning, is the moment you start to panic.  I have to get off of here.  I do not want to be on this miserable ride.  When is it going to end?  I am going to be sick.  I can’t breathe.  Somebody, please help me.

You feel trapped.  Stuck.  Panicked.  Like your entire universe is spinning.

And it’s still spinning.  The moment Charlie died…I knew something was wrong.  I spent a year knowing something was wrong.  A year of spinning around frantically, begging God to make the ride stop, begging doctors to make the ride stop, begging Reid to make the ride stop…spending every moment of every day…trapped and clausterphobic, and paralyzed with fear.  And no matter how hard I fought it…still spinning.

And I’d look out from my swirling, sickening torture chamber…and stare in confusion at all those people in their happiest-place-on-earth-lives, strolling past the Tea Cup ride with big smiles and funnel cakes.  They were there.  Under the same blue sky.  But on the other side of the fence.  With absolutely no idea how horrific it is inside the spinning tea cup ride.  I am alone.  I am in pain.  No one understands how much this hurts.  And it is never, ever going to be the same.  That…is the cry of grief.  

And then, when another baby died in my body six months after Charlie…my worst fears became my reality.  I am not getting off of this horrific ride.  I am still spinning.  I am still suffering.  I still can’t breathe.  Only this isn’t a season…it’s my new life.

And it’s around that time when you have been on the Tea Cups long enough to wreck your soul and lose your sanity…that you start to throw desperate pleas and promises up to the sky.  won’t ask for anything else, ever again God…just please, please let me get off this horrible ride of suffering.  I will do anything, I will be anybody, please just make it stop. Please just take this away.  That…is the cry of chronic pain.

And then, last November, a year ago this very week, our dreams that the ride might finally be over were completely shattered…when yet another baby died.  This one was so tiny, barely even formed.  But Here.  Held in my hands.  As the world spun on.

And then, I started to get sick.  Sick enough to notice.  Little things at first, and then big things.  Things that even the fourteen doctors I’d been to…who had mostly made me feel crazy…began to acknowledge was something.  And I began to realize that maybe wasn’t crazy…maybe I was actually on a crazy horrible ride.

And then, God led me to a doctor who had actually been on a Tea Cup ride before. Someone who actually knew how horrific it was.  Someone who actually understood the endless, hopeless spinning that was my life.  Someone who had suffered, and also happened to be a medical doctor.  And as I sat in that doctor’s office this last February, and my scary list of symptoms finally made sense and had a name…I began to think the tea cups were slowing down.  And maybe just maybe…even stopping.  I began to dare to hope that it was finally the end of this terror ride.

And hope…is a dangerous thing.

Because the Tea Cups didn’t really stop…they just slowed down long enough to let on new passengers.  And then, they started to pick up speed, and I continued to spin violently along in my deeply broken body.  Because everything that comes in…must come back out.  And all of the toxins that ravaged my body, and wrecked my mind, and killed my womb, and devastatingly took my babies…have to come back out.  Slowly…one cell regrowth at a time.

And it has been an absolutely miserable, hell-journey along the way.  These last few weeks have been particularly horrible.  I’ve written a hundred blog posts in my head lately…and not one of them has made it to this screen.  I’ve been way too busy trying to survive this ride…to sit around and chat about it.

There have been endless blood tests and doctors appointments, and some really difficult circumstances in my little ones lives…that have made writing about this seem like a total impossibility.  Like, who honestly whips out a pen and paper in the middle of the tea cup ride, and starts waxing poetic about the crazy ride?

I’m not writing this because I have time.  Or because I am excited to talk about these things, or because I am seeing such beauty in the journey.  I’m not.  I don’t.  I won’t ever probably.  I am writing because we desperately need your prayers.

Because if this horrible ride has taught me one thing, it’s that while most people really are on the other side of the fence and haven’t the faintest idea how horrific two endless years on the Tea Cups actually are…they can still look over the fence, and into your life.  And pray for you from the other side.

And they do.  And I am so completely grateful for each and every one of you who pray for our family. Be it once, or multiple times a day.  And all I can say to you who are enjoying the other side of the fence…is please, please pray.

Because right now, we need your prayers desperately.  This is not a quiet,  “Oh pray for us” moment.  Imagine someone motion-sick, crying out to you from a violently spinning Tea Cup.  Screaming, “HELP US PLEASE!”

I went in today for another blood test.  I’ve started getting them pretty much weekly, as my kidneys and other vital organs continue to test poorly.  But my biggest concern is for my cells.  Mycotoxins affect your body at a cellular level and create cellular damage.  I have been struggling with really bad mitochondrial fatigue lately.  Basically, my limbs feel like lead every moment of the day.  Tasks like putting duvet covers on beds have become totally impossible for me.  It is difficult to drive a car, because it’s hard to lift my arms up for such a long time.  And by the time I climb the stairs in our house, my legs feel like jelly. It basically feels like you’ve just run a marathon all day long…even first thing in the morning.

Please pray for my cellular fatigue.  It takes years to rebuild a new body-worth of cells. Which probably explains why my kids are doing so much better than me.  Because their bodies are so new to the world…they reproduce cells at a rapid pace.  I am so deeply grateful for this.  And for them.  And grateful for how much their younger, newer bodies have been protected from this horrible physical journey.  But my body is old and broken, and my very cells have been destroyed, and I am at an all-time low physically.

Please pray for our environment.  The hardest part of environmental illness…is how unmanageable it is.  I am affected by the very air I breathe.  I can tell you exactly which stores and places in town have toxic mold.  And once I am exposed to a high level of bad molds, it takes me weeks and sometimes months to recover from neuropathy and mitochondrial fatigue.  As my body continues to get more reactive to bad environments…I have had to limit my exposure to new ones.  It’s not like being “allergic” to something like pollen or grass.  When my body comes into contact with the life-threatening toxins molds produce…I don’t sneeze or get a stuffy nose…my nerves and cells shut down.  I get blurred vision.  My hands and feet go numb.  My whole body turns to lead.  Basically, I go into toxic shock indefinitely.

My flesh and my heart may fail.  They certainly seem to be.  But my spirit also feels pretty weak and unwilling these days.  I know that “life is hard”…even for people on the other side of that Tea Cup fence.  I know that every life is full of sunburns, and difficult people, and cold funnel cakes, and ridiculously long lines you have to stand in with screaming toddlers sometimes.  I remember all of those burdens as real and true, even in my old life on the other side of the fence.  And it didn’t always seem so “easy.”  But now that I can see it more clearly…my old life was actually pretty easy.

I couldn’t have imagined my new life, back when I was in my old one.  And you probably can’t imagine it either.  I know you can’t really fathom how soul-sucking, and heart-breaking, and sanity-taking it is to be on a two year Tea Cup ride…unless you’ve actually been on this side and taken the ride.  But I ask you to pray for us, even in the not-knowing.  It’s not called the Mad Hatters Tea Cup Ride for nothing.  Suffering is maddening.  And confusing.  And exhausting.  And we are completely spiraling.  Over the last few weeks, some really difficult circumstances have sent us on yet another desperate spin downward, and I battle despair daily.   It’s like someone took our fragile little Tea Cup, and gave it a nice hard shove.  I cry out “Mercy.”   And there is no mercy…only the endless despair of spinning.  Depair…about the One who ultimately controls this ride.  Who alone could make it stop at any moment.  And Who hasn’t…right up to this very day.

And it’s in those moments that the Tea Party’s soundtrack of lies…gets louder in the midst of this swirling pain.  God doesn’t see my spinning.  God cannot hear my endless screams.  God will not rescue me.  I am utterly forsaken, and completely alone.  And there is no, even ETERNAL end in sight.

But even as I sit here soul-sick and dizzy, and weary beyond belief, my heart needs to put words to a life of chronic suffering.   Because deep down, in spite of all of the lies I hear that we are the only people on the planet who are suffering this deeply…I know it’s not true.  It couldn’t possibly be.  I knew it wasn’t true as I sat at the blood lab this morning, surrounded by people in pain.   I knew it as I listened to the screams of the little boy with cerebral palsy who was crying out in pain in the room next to mine.  I could feel his very soul-pain.  I could feel his mama’s soul-pain as she watched on helplessly.  I could feel the collective, aching weight of the other people in the waiting room whose lives have also spun wildly out of control, in ways they will never, ever be able to get back.  Just.  Like.  Mine.

I know deep down that the world is actually full of people whose lives are spinning to places they would never want to be.  Full of people who are on a miserable ride they never would have chosen for their lives.  Full of people who are quite certain that they are not at the “happiest place on earth” where all their “dreams come true.”  People who are deeply weary from the ride of suffering.

And to you…who may find yourself in the midst of the hellish spin of grief, or the endless whirl and twists of chronic pain, all I can say is this…I am so very sorry.

You are not alone.

There is One…and One alone…who truly understands this horrific ride called “Life.”  And He went to enormous lengths to make His understanding, a living, breathing, unmistakable reality for you and me.  He left a castle, high up in the one and only Happiest Place…and came here to subject Himself to the worst spinning, sickening, terror-ride in human history.  I think about Him.  And I feel silenced, even amidst the spinning.

And I think of those who were with Him in the darkness of those days.  I’ve been thinking about the disciples a lot lately.  I’ve felt really, really down on myself lately for my lack of faith, and hope, and love in the midst of our endless suffering.  I’ve felt guilty that I have actually seen God’s faithfulness so many times before this, and yet am struggling deeply to believe in Him all the same.   I’ve felt saddened and ashamed by my lack of trust in the One who actually promised, “in this world you will have trouble,” and my anger and despair that He who promised that…hasn’t chosen happier things for us anyways.

But when I think about who the disciples were…and all that they too had seen firsthand of His goodness and grace…I am comforted by their faith.

And even more…by their lack of faith at times.

I imagine John at the foot of the cross.  I know there was no moment in all of human history…when the world “seemed” more completely spun out of control…than at the bleeding Savior’s feet.  I picture the disciple “whom Jesus loved,” whose universe felt shattered and spinning…as he looked up at his Hero dead and crucified.

I imagine Thomas, blurting out his weak faith in front of God and everybody, “Jesus, I will ONLY believe this horrible ride is over…IF You show me what I WANT to see.”  Thomas definitely reminds me of somebody.

And most of all, I picture Peter…running on fear, and standing alone in the middle of a cold, dark courtyard…during the worst moment of his entire life.  Saying the worst possible things you could ever say.

Because these last two years…have been the absolute worst of mine.  And I have said…the absolute worst things you could ever say.  And I feel as messy and broken and utterly hopeless…as those who have gone before me.

And yet sometimes, even as my body continues its downward spiral, and my soul staggers in the blinding misery of a life I hate…I look up.  Sometimes not for days or weeks at time. Sometimes only in anger and ache.

But when I DO look up…I see colorful lantern lights.

And beyond them…stars.

And beyond the galaxies…somewhere a million miles beyond my soul-sight…the One who waits for me.

Who will someday finally stop, this horrible ride that has become our lives.  Who will someday rescue all of us, once and for all, from a world that has been spinning frantically out of our control, since the very dawn of time.

The One for whom we wait.  In faith.  And sometimes, almost no-faith.

Because He came, and willingly subjected Himself to the the deepest suffering known to mankind.

That we might have a Way to see beyond all the fences and lights.

Straight into His very eyes.

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The Great Lie

I’m writing this late at night.  I should probably be in bed.  But it’s been a long, hard day, and I can never sleep when Reid is away.  He comes home tomorrow, and I am certain that no one will be more glad that he is home…than me.  Well, except for my kids, maybe.

Because when Daddy’s back, their little world will be a little less wrong, and a little more right.  Mommy will cook more, and yell less.  There will be more story times, and less TV times.  And we’ll all feel a little sweeter and kinder and richer…when Daddy’s here to help fill up our decimated Love Banks.

Or rather, I should say, when Daddy’s here to help defend us a little…against the enemy and his lies.  Because his lies…always seem to be about love.  And those lies, always seem to leave our love banks feeling extra empty.  

It’s amazing how many more lies I hear when I am alone, and Reid is away.  Lies about his love for me.  Lies about other people’s love for me.  But most dangerous of all…lies about God’s love for me.

This has been on my mind a lot lately, but especially after story time tonight.

The kids and I love to read together at bedtime. We snuggle under Daddy’s big Cardinals-watching-blankey, and everyone is a tiny bit sweeter, than our usual spicy. Tonight, Fred picked “The Jesus Storybook Bible” as his literature of choice.  Freddo, like Mommy, is a very high “P” on the Meyers Briggs…so he had no trouble skipping over the Creation scene and starting smack in the middle of the Great Deception.  (It probably drove our organized and linear little firstborn a tad crazy…but hey, we P’s need a little room for our free-spirited inconsistencies.)

I was expecting to blaze through the story, but what happened next took me completely by surprise.

I could barely read the words on the page.

It has been a really long week.  Lots of physical pain.  Basically, I’m in pain every moment of every day.  The only way I can explain the inflammation that comes from mycotoxin poisoning is to say…imagine a headache, a back ache, a stomach ache, an ear ache, and a sinus infection…all at the same time.  All of the time. That’s…what I feel like.

And to add insult to injury, I’m in the middle of a battery of blood tests because there is a good chance my kidneys are failing me.  I guess technically I should just say, “my kidneys are failing.”  But this feels personal.  Like they are actually failing me.  My kidneys are really one of my only major organs that haven’t been wrecked by mycotoxins, and I feel angry and weary that they too, now appear to be turning against me.

All of that to say…I’m struggling.  I’ve been to the blood lab more times than I can count, and I saw a cardiologist this morning because of weeks of chest pains.

But even as I sit here, wondering if my actual cardiovascular heart is about to fail me…it feels like my heart, my Forever heart- is failing me.

Nothing compares to the pain of last year.  I think about our precious babies who are missing, every moment of every day.  But this year, well this year is the prolonged suffering of watching the body that could not sustain my babies lives…begin to no longer sustain mine.  I actually go to bed at night praying desperately that I will not die in my sleep, and be found by my kids in the morning.  I’m sure that is mixed with all sorts of irrational and messy…but it is really hard to go to bed with chest pains, and with hands and feet numb from neuropathy, and with kidney’s that seemed to have joined this fight against me…and to not fear that death is our next suffering.

All of that to say, I fear my heart is beginning to slide into the abyss of what the “happy-smiley people” would call, “A Not Good Place.”

But I’m not one of those, so I’ll just call it like it is…

I am in the depths of despair.

If Anne of Green Gables is a kindred spirit of yours, you probably know what I mean.

But if you don’t…well then, I’ll just have to spell it out for you.

Last Saturday, Reid and I decided it was time to clean out the garage.  I have been so sick over the summer that I am now more convinced than ever that it is necessary to get rid of even the things we were hoping to give to the kids some day.  If we can’t keep it, and touch it, and enjoy it…I see no point in dragging it along through our lives.

This spring, when we got rid of everything we owned from the Mold House…there were still a few bins worth of stuff that I had kept behind.  A bin of photo albums.  A bin of Christmas stuff.  And a bin of things, too precious to part with, and basically too painful to deal with at that time.

The dress I wore the day we buried our precious Charlie.

The hundred’s of sympathy cards we got from people who reached out to us that spring.

The little black suit Fred wore for his one-year-photo shoot, that I just couldn’t part with because I was still naive enough to hope another baby boy of ours might wear it for five minutes someday.  

The ridiculous turtle sweater I happened to be wearing on the day Reid asked me to be his bride.  

All of the love letters…from before and after…Turtle Sweater Day.

Charlie’s teddy.

Basically, everything most precious to me.  The bin we’d have taken, “In The Event of a Fire.”

Except…it wasn’t a fire.  It wasn’t fast, and clear-cut like that.  It was painfully slow. And horribly messy.  We had to willingly hold up, one by one, the perfectly normal looking, and most important and cherished things in our lives…and throw them in the garbage.  One.  At.  A.  Time.

Well, Reid did actually.  I am still so sick from mycotoxin re-exposure this summer that if I went anywhere near these cherished things, I would probably be wrecked immediately.

So there I was, on one side of the driveway, weeping in my beach chair.  And there he was, on the other side of the driveway, painstakingly lifting up and setting back down in either the “Trash” or the “Keep”…all of the things that represent the most wonderful and horrifically painful moments of our lives.

It wasn’t so much about the things.  I’ve already parted with 99% of our things.  And honestly, months down the road, I am more certain than ever that all of the things we lost were just that…things.  Inanimate objects that hold almost no meaning or weight whatsoever…compared to how hard it was to give up our babies.

I don’t even like that hedious black sweater with the embroidered Turtle on it.  It’s how much it reminded me of the day.  It’s how much it made us both laugh hysterically that I ever wore that…even as tears of pain streamed down my face.

What I realized as I watched Reid go through our “life” one last time…is that all of those things reminded me of all of those days.  And what hurts so bad, and is becoming so incredibly difficult for my heart to reconcile with my faith…is that we have lived through so very many bad days.

We had managed to stuff down an awful lot in these last few bins from our “old life.” So many sorrows.  So many memories.  So much of the pain of losing literally everything and everybody…over these last two years of life.  A lifetime worth of pain had been squashed down tight in that mycotoxin-laden bin…like a real live version of those jokester Cans of Snakes.

And all of a sudden, the cover sprang open.

And all of the pain spilled out…right there in the middle of our highly visible driveway.

And I started to weep.

Honestly, it probably looked like we were getting a divorce.  Our kids were in the house, having a very loud, completely unsupervised Frozen dance party, and we were out in the driveway, visibly suffering.  We must have been quite the sight.

And as I sat there…it began to happen.  It creeped in slowly at first, and then it came on with a vengeance.  Wreathing, and squirming, and attacking…like worms.  Or better yet…snakes.

It.

The great Lie.

That wretched, loathsome, ugliest of all things.  That thing…where if you believe it hard enough, for long enough…it will take away the one and only thing that actually matters…your eternal life.

Out in the driveway, I couldn’t even see the lie for what it was.   Because, that, after all…is the nature of lies.

But now, days later…it hit me hard during story time tonight.

Fred handed me his Children’s Bible and said, “This one Mommy, let’s read about the Snake.”

“As soon as the snake saw his chance, he slithered silently up to Eve.  “Does God really love you?  the serpent whispered.  “If he does, why won’t he let you eat the nice, juicy, delicious fruit?  Poor you, perhaps God doesn’t want you to be happy.

Th snake’s words hissed  into her ears and sunk down deep into her heart, like poison.  DOES GOD LOVE ME?  Eve wondered.  Suddenly, she didn’t know anymore.”

And as I read those words, my mind flashed back to our time in the driveway last Saturday.

Reid, holding up our wedding album.

Reid, holding up our love letters.

Reid, holding up our life.

And Reid, lifting Charlie’s teddy up and asking me with tears in his eyes, “Do you want to keep this?”

And right then, from stage right, ENTER…the lie.

God couldn’t POSSIBLY love us.  He took away Charlie. And then the next baby. And then the next baby.  And then the mycotoxin hurricane stormed in, and took all of our worldly things.  And now I am suffering with boils of pain that cover my entire body.  HOW is it possible for one family to endure this much pain? God couldn’t possibly LOVE people who He allows to suffer like THIS.

Reid, lifting up Freddo’s little suit, the question not spoken, but still hidden there in his eyes, “Are we really going to put this on another boy, even if God did do, like ten miracles that He ISN’T doing…and we somehow miraculously had another baby boy someday?”

Does God love me?  No.  And I mean, HELL no.  He only REALLY loves the people who get to KEEP everything.  The people who still have all their stuff, and all their health, and most of all…all their babies.  He can’t possibly love US.   POOR US.  Clearly, God doesn’t want us to be happy.

I mean, usually that slimy snake is at least semi-crafty.  But out there in the garden of our driveway, there were absolutely no subtleties.

He was selling.  And I was buying.

But as I sat there tonight, with innocent little Fred cuddled in my arms, I began to see things a little more clearly.  I thought of Freddo, as he listened to a story about the very snake who has stolen, and killed, and destroyed so much joy from our family. The very snake…who he will have to spend the rest of his life fighting against with every breathe of his being.  The snake…who is after him now, even as he sleeps.  And I realized just how deeply each and every one of us are living that very scene.

Does.  God.  Love.  Me?

And IF He somehow does…than “Why won’t He let…”  (Fill in the blank.)

I hear those lies, every single day.  I hear them in the grocery store.  I hear them when I look at Instagram.  I probably even hear them in my sleep.

Nothing makes you realize just how many stupid people on the planet get to bear children…like burying three of them in a years time.  I see pregnant ladies everywhere.  Most seem really nice, but some of them drive me crazy.  I see pregnant ladies smoking.  I see pregnant ladies belittling their kids in Wal-mart.  I see people who don’t even want kids complaining about their pregnancies on Facebook. And honestly, it makes me want to scream.

And when I am not waging a war in my heart and mind against the unjustness of our story…I am battling a totally different set of lies.  “I guess I am just not a good enough mom.”  “I guess I just don’t love God enough.”  Or maybe, I guess God just doesn’t love me.

And nothing makes you realize just how many healthy people there are in the world…until you are sick every moment of every day.  And while I watch everyone around me heartily bouncing around like Tigger through their full and busy days…I feel like I am literally dragging my body along through mine.  “I guess God doesn’t have anything left for me to do in this life…except be miserable and sick.”  “I guess God doesn’t hear my, or Reid’s, or our kid’s endless prayers that He would heal Mommy’s body.”  Or maybe, I guess God just doesn’t want us to be happy.

And what I realized as I read those very words to my kids, straight out of the children’s Bible that’s sitting on half the Christian coffee tables in America…is that there is absolutely NOTHING unique about these lies that have become the soundtrack of my life.

That sorrowful, soul-sucking song…is on repeat.

In every heart.  Everywhere.

Every.  Single.  Day.  Of.  Our.  Lives.

And right now, people…while we’re stuck broken, surrounded by broken, here on this broken planet, I’m here to tell you….it’s fight or die.

For you, and for me.

If we don’t fight these lies, they will sink us…just like they sunk Eve.

Actually, let’s make that a Present-tense.  Just like they are sinking me.

I don’t really have a nice bow to put on this one.  I wish I could.  I like bows.  I like to feel like I’m writing about things I struggled with yesterday, or maybe this morning. But not things that I am still barely surviving…even as I write this tonight.

So let’s end this post…with the best self-defense mechanism I can think of.  Let’s turn it on you.

Will you take the step of faith to fight back…by telling someone about the lies you are hearing today?  You could post them here.  You could share them with someone else later today.  Just promise me this…that you will tell somebody.  That you will let it be known, to at least one other person, and especially to the enemy who is slinking around your heart even as you read…

THIS…(fill in the blank)…THIS is WHEN I hear, “Does God love me?”

THESE…these are THE MOMENTS I think, “Poor you, perhaps God doesn’t want you to be happy?”

THIS is WHEN…Suddenly, I don’t know anymore.

And Lord Jesus, please come fight for me.

Because I noticed something out on our driveway last Saturday.  I did hear, and I did believe…every single one of those lies, as we sat there and waded through that bin of suffering.

But I also felt such relief in being known by Reid, in the midst of the lies.  Relief in knowing that he knew exactly why every single thing he was pulling out of that bin…was going to make me cry.

And most of all…that he knows exactly how much I am struggling to believe in the goodness of God and His love for me.  And that he is praying for me.  And fighting for me.

One lie at a time.

Until one day, when the bins will be gone for good.  Right now, your garages and closets and attics are probably full of all of your most treasured memories.  And ours…are empty.  But someday, every single one of us, are actually going to lose everything.

And then, the only thing that will matter, in that split-second of time between this world and eternity…

Is if we believed the Lie…to the point of no longer believing the King.

Or if we believed the King…and let Him carry us…to that great and glorious Day.

The day when Finally…we no longer believed the Lie.

 

 


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An Apple A Day

As promised, I wanted to share a few of the things that our family does daily…on this long journey towards a healthy someday.  Many people have written and asked us what in the world you can possibly do once you are exposed to toxic mold, and I wanted to respond.  Some days, I feel so miserably sick that I feel like the worst possible person to share what it looks like to fight for a healthy life.

On the other hand, I have logged hundreds of hours doing research on the best products and practices, and if I can help others skip putting in that kind of time…then this post is worth it to me.  The last thing I have wanted to do on my sickest of days…is research the best kind of air filter or iron supplement for our family.  Being sick from toxic mold exposure has felt like fighting for health with a gun to my head…but it has also made the things I have learned on this journey all the more valuable to me.

This post is long, and I apologize in advance for my lack of brevity.  But when your immune system has been under constant attack for over two years….well, it takes a lot more than an apple a day to get healthy.

Before I begin though, I have one important caveat that I need to make about “being healthy.”  In the temporal world we live in…I think that striving for health has it’s place. But we are also eternal beings, and in the eternal realm, I couldn’t agree more with Solomon…all of this striving is utterly meaningless and “Vanity, of vanities.” Because, no matter what you do and how hard you try…our days are still numbered. And our control over our health is limited far more than any of us would like.

I’ll explain.

I have a distinct memory of one morning in college.  As I lay there in my dorm room, with the Chicago sun streaming down on me, I felt overwhelmed with my endless list of “unknowns.” What will I be when I grow up?  Who will I marry? Will I ever get to be someone’s Mommy?

And then, all of a sudden, right there in that moment, I heard God speak.  It wasn’t in an audible voice.  It was just a whisper to my heart, but it meant so much to me.

I heard Him say…

As you lay here in the sunshine, before you even wake…

I SEE you…on your wedding day.  

I SEE you…with your children.  

I SEE every single moment, that is yet to come in your life.

You are stressed and worried, and fearful of many things…and I SEE.  

It was a simple moment.  Not even profound really.  But it meant so much to me. And it began to permanently change how I looked at the many unknowns of my life.

And it’s still true.  Probably, even more so now.

Because what I realize now, after almost two years of sorrow and suffering so deep that most days I still can’t even breath…is something that I hadn’t really understood in my college days.

As I laid there in my dorm room…He also saw the suffering.  

He saw me in that cold hospital room, the moment the doctor told me that our precious Charlie had died.

He saw me as I left for the hospital great with child…and He saw that I had to come back home without a baby.  Back, to the very home that took their lives.

He saw the next baby and the next…and my failing health every day in between.

And He sees the day I will join each one of them in my Forever life.

And it is because of all that we have been through, and because of all that He sees, that I am convinced that I can eat my gluten-free crackers, and take my endless medications, and breathe better in my filtered and much-improved air quality…but it is God alone who will sustain our very lives.

And God alone, who will eventually end them on the day He has ordained.

He has numbered my days.  Just as He numbered every one of baby Charlie’s.  And I believe with all my heart, that we cannot add or subtract a single moment of our lives…from the sovereign story He is writing.  From the God who sees and plans it all. From the God who even now, is allowing me the very breath to write these words…and you, the very breath to read them.

I know this isn’t a popular sentiment, especially for American’s and our hyper-control mentality.  But I will die on this hill.  Being healthy…is my responsibility to the story God is writing.

But…

It does not change the lines.

THAT being said…I want to be healthy.  I want to fight with the sword I’ve been given. Just as God sent His people into real battles in real time…battles that He had predetermined they would win or lose, based on the story He was writing.  But they still had to fight.

And so do we.

And so, with that in mind…this is our attempt to fight for health, as the mold ravages our bodies.  The five things I most recommend.  Our “Apple A Day.”

1.  THE APPLES WE EAT.  

rayal gala apple on whiteWe may as well start here.  Since most of the world is in agreement that “you are what you eat.”   The hardest part about toxic mold exposure…is what it does to your immunity.  I am actually taking some of the very same supplements that people are given when they are diagnosed with HIV…because mycotoxins put your body in a permanently infected and inflamed state.  All of that inflammation makes it impossible for you to fight off future infection, disease, and ultimately often cancer…and that is why toxic mold is such a dangerous thing.

For the last two years, our bodies have been under constant attack, and in a perpetually inflammatory state.  And so, anything we can do to reduce inflammation or strengthen immunity…that is what we eat.  I actually do make my kids eat an apple a day, and we try to eat “the rainbow” as much as we can.  We also try to eat as much organic, pesticide-free food as possible, because those things really do add to the “toxic burden” we’re already carrying.

But one of the biggest things people with compromised immune systems can do, is avoid anything that causes further burden to your body…especially inflammatory foods.  One of the most inflammatory foods is gluten…and my doctor highly recommended that anyone with mold exposure go gluten-free.  When I finally stumbled into Dr. Hope’s office I weighed barely 105 pounds, and being gluten-free wasn’t really a good option at that point.

Now that I’m doing a little better, I’ve bit the bullet and given up gluten.  It hasn’t been easy… especially for someone who really enjoys things like the Paris Baguette Contest. But I really have had less pain in my stomach and intestines, now that I no longer eat gluten.  It is boring and hard and I really miss all that delicious food I can no longer eat…but anything I can do to reduce inflammation…feels like the right thing to do at this point.

I keep it simple.  I have no interest in being a gluten-free, super-star chef.  I found ten things I can eat…and I eat those.  The hardest part for me has been snacks.  So I’m going to share my five faves…

photo-10Every one of these are seriously good actually.  I eat the granola bars and apple chips on the go, and have Mary’s Cracker’s with hummus, and these kale chips with avocado every day.  Some days I eat it straight up with olive oil and garlic salt.  Some days I make it into guacamole with tomatoes.  But tomatoes are a mixed bag.  There’s actually a whole slew of foods that contain mycotoxins (http://www.healingnaturallybybee.com/articles/foods32.php) so I have to limit my intake of these as well…and corn and tomatoes are two of them.  But…you have to eat something.  So these are my go-to faves.

The fact that so many people seem to be developing a gluten-intolerence does give one pause that something that so many people can’t tolerate…might not be all that good for any of us actually. (For more info on this, check out the book “Wheat Belly,” by Dr. William Davis.)  And my doctor recommended trying going gluten-free for at least a few months to see if there was any improvement on the inflammation. Honestly, I’m hungry a lot.  But I am still eating foods I like…I just need to eat a lot more of them, than I did when I was eating stick-to-your-ribs gluten delights.

Here’s a good article on that if you’d like to read more about inflammatory foods: http://www.huffingtonpost.com/2013/03/21/inflammatory-foods-worst-inflammation_n_2838643.html?

2.  THE WATER WE DRINK.

American’s total obsession with food has definitely turned food into the “health priority.”  I actually think this is wildly imbalanced.  The human body is 70% water and most people give little more thought to the quality of the water they drink…than buying a cheap Brita filter from Target.  Unfortunately, the Brita just doesn’t cut it. Most cities add a heavy does of chemicals like Fluoride and Chlorine to the water we are drinking, which only increases our toxic burden.  I’ve researched lots of other waters, but I’m a little skeptical of things referred to as “Miracle Water.”

We have found that the Berkey water filter is a reasonable and cost-effective way to get healthy, chemical-free water.  Gizmodo did a good review on why Berkey is one of the best, and we’ve been really happy with ours.  We have to fill it about five times a week.  It’s easy to refill, and even our kids can get their own water, which is huge because water is one of the most important ways to flush toxins back out of your body after exposure.  Our motto is, “Good things in, Bad things out.”  And I’m not sure there is a more important product in the world…than good water.IMG_3431Gizmodo review on Berkey: http://gizmodo.com/our-favorite-kitchen-gadgets-1461169632.

3.  THE AIR WE BREATHE.

Next to quality water, I am quite certain the second most important thing is quality air.  This one hits really close to home for me.  I cannot tell you how painful it is to think back on our life in our old house.  We were eating healthy food, and taking quality vitamins, and getting good sleep and exercise, and meanwhile, every moment of every day…breathing air that was poisoning our bodies.

The number one priority is being sure that your air is SAFE and as mycotoxin and chemical-free as possible.  The second priority is to keep it as clean and filtered as possible.  And the third is to just get as much fresh air as you can every day.

First, is your air FREE OF as much MOLD AND MYCOTOXINS as possible?  Absolutely no home…is completely mold free.  Much like dust, mold spores move around with the air, and they are everywhere.  In every home and every car, and on every porous thing.  But…the goal is to limit the levels of mold growing in your home (and especially the levels of mycotoxins floating in your air) to a safe and manageable level for your body.

There are only two ways to find out how much mold (and more importantly how many mycotoxins) your body is burdened with on any given day.  One, is to test your body.  If there is any doubt in your mind that your air is not safe…I highly recommend getting a Urine Mycotoxin test done by Real Time Labs in Carrollton, TX ((972) 243-7754. ) They are extremely helpful and honestly, know more about mold and mycotoxin exposure than almost any doctor you could go to.  They are great at giving referrals, and may be able to help you find a good environmental doctor or mold inspector in your area.

The other option is to get a mold test done on your house.  This is a very mixed bag in my opinion, because most mold inspectors know absolutely nothing about myctoxins, and a good house inspection costs about $1,500 here in CA.  But, our family is living proof that it doesn’t matter how healthy you are…if you are breathing poisoned air every moment of every day.  So I believe it is worth getting your house, and especially your body tested, if you suspect exposure to these things.

Beyond a mold test…I highly recommend getting a good air filter.  I am an obsessive duster.  I dust and vacuum our house constantly in an effort to vigilantly clean the air we breathe.  I was that kid…the kid who actually bust out the vacuum before my friends and I would play house.  I really wanted, even my imaginary house to be sparkly clean.

All of that being said, I never realized how dirty the air we breathe actually is…until we bought an air filter.  We have three in our house right now, and they are not cheap.  But every single time I open the filter and see all the black dust caked in there, I am reminded that it’s worth it…that could be in our bodies instead.  Here are the filters that we use…photo-10On the left is the Alen Paralada Air HEPA Air Filter, and on the right is the Austin Air Healthmate Jr. Plus.  The important thing is that you get one that is HEPA rated.  (Which means it can handle very small air particles.)  The Austin costs a little more, but is worth it to me because it also uses activated carbon, much like the charcoal we put in our bodies every day.  The Austin also does a better job of helping clean the air of chemicals and gases, but both are great filters.  We bought all three of ours on Amazon, which is great because you can return it if you don’t love it.  But if you do buy one, I can guarantee you that you will notice a difference in both dust level and air quality…and you will probably not want to go back after seeing such an improvement in the air you breathe.

Finally, since outdoor air is almost always cleaner than indoor air (unless you live by, say, a gas station or a freeway) the very best thing is to get outside.  AS. MUCH. AS. POSSIBLE.  We try to spend at least a couple of hours outside every day.  We go biking, walking, running, hiking, beach combing…basically any excuse to be outside, and it has drastically improved our health.  In addition to this, I am on four different compounded nasal sprays to help kill off the live mold still living in my nose.  These sprays are absolutely necessary, but I have found that my health is most immediately affected by the quality of the new air I am breathing.

Honestly, when you stop and think about how many times a day you take a drink of water…compared to how many times you take a breathe…air quality hits you in a whole new way.

4.  THE SUPPLEMENTS WE TAKE.

The reality of our world is that no matter how much healthy, pesticide-free, organic food we eat…we just aren’t getting enough nutrients to really arm our bodies with the vitamins we need.  Studies have been done on the difference between whole food vitamins (vitamins made out of actual vitamin C, iron foods, real fish oil, etc.) as opposed to synthetic vitamins.  It’s staggering.  Almost all of the vitamins on the shelf of stores like Target and Walmart…are just filled with really expensive synthetic fillers.  I buy all of my vitamins either directly from my doctor or at Whole Foods, and even though they are not cheap…I know that I am actually getting 100% of my daily allowance of whatever I am taking.

For a while I was taking upwards of 60 vitamins a day, and I have now cut back to 30 or so of the absolutely necessities. When you are struggling with toxic exposure, those are usually things like K-Pax “Fuel of Life,” and supplements rich in Zinc, Vitamin C, D, and B’s.  I take a compounded injection of methylated B12 every day, and it is probably the one thing I am doing where I feel immediate results.

In addition to real, whole-food supplements, the other thing I take daily is probiotics. If you have been to an American medical doctor in the last ten years…you’ve probably been given an antibiotic…because they tend to hand them out like candy at a parade.  It’s not that antibiotics don’t have their place…I really think they do, and I’ve taken three rounds of them this year alone.  But…they not only kill off ALL of the bad bacteria in your body…they also kill off all of the good.  And the good bacteria we need to fight off infection…comes back a lot slower than the bad.  That’s where probiotics come in.  They give the good bacteria a fighting chance to beat out the bad.

I take multiple probiotics, multiple times a day, as well as Fish Oil, and gluthione in both oral and nasal form.  Gluthatione is something your body naturally produces that aids in detox, but I take more to help draw the mold out of my body and into my intestines where it can bind to the activated charcoal I’m taking.  (I like the charcoal sold by Vitamins Because, or the Cocconut charcoal by Bulletproof.)  And here is my favorite probiotics, and the oral form of glutathione I take…photo 1

5.  THE BAD STUFF OUT WE GET OUT…through any and every means.

I’ve talked a lot about the “good stuff” we try to put in our bodies, but I’d be remiss if I didn’t mention the importance of “Bad Stuff Out.”  There’s basically only three ways to get bad things like toxins and bacteria and chemicals out of your body…once they get in.  You either:

1.  Eliminate it out through your intestines.

2. Flush it out through your mouth or nose.

or…  3. Sweat it out, very slowly, over time.  

At the risk of sounding like the elderly people I used to visit in the nursing home…BM’s are a huge part of being truly healthy.  Your bowels really do bind up and flush out so many toxins, and one of my nutritionists highly recommended a bowel moment for every meal you eat.  I know that may sound absurd, but I really think things like chelated magnesium supplements, magnesium epson salt baths (Dr. Teal’s Lavendar salts are my favorite), coffee, and prune juice really do help keep your intestines healthy and free of the junk that eventually plagues your whole body if left there indefinitely.

Some toxins don’t even make it to your intestines, but rather take up permanent residence in your nose.  Reid, Emma, and I all had nasal swabs done that showed rare colonies of mold growing in our noses…the same molds that were found in the Mold House.  Because of this, and the fact that it takes at least nine months to kill off live mold and fungal infections…I take multiple nasal meds every day.  I also do the Neli-Med sinus rinse three to four times a day, and even more often when I have a sinus infection.

Finally, whatever toxins do not make it out of your body through those two methods…well, they just live there.  At a cellular level.  Or in your brain, where so much of mold and mycotoxins tend to dwell permanently.  That…is where sweating comes in.  Unfortunately, I don’t sweat.  I haven’t even owned deodorant since high school…because I just don’t need it.  It was because of this, that my doctor recommended we buy a sauna.  You can find cheap ones online, but if you want to be sure that it is safe, and that the wood used is actually toxin free…the good ones are expensive.  But we have found that it is the only way I can actually sweat toxins out of my body, and it has been worth it for our family.

We got our sauna from Heavenly Heat, and it has both a coal sauna and a far-infared unit inside.  For the last five months I have gone in the sauna for 30 minutes almost every day (sometimes twice) at 160 degrees, and it really is the time I feel the very best.  I.  Sweat.  Buckets.  And, best of all, it has helped open up my sweat glands so I can actually sweat now, even when I am just going for a run or riding a bike.

Most importantly, sauna’s strengthen your heart.  It is actually quite a work out sitting in a 160 degree box for 30 minutes, and I can tell a major difference in my runs since I’ve begun using the sauna.  I can run for a really long time, for someone who’s only exercise for the last six months was sitting in a sauna watching cooking shows on TV.  A sauna isn’t for everyone, but for people who have trouble sweating, particularly people like me who have MTHFR (a genetic blood disorder that an estimated 60% of the population has some form of)…anything you can do to open your detox pathways…is really something to consider if you want to be healthy and toxin free.10154468_10152008754645863_2312791343003887973_n

And that…is what we do.  Our apples a day.  There’s more, but those are the basic “Fab Five.”

Honestly, I’m exhausted from writing about it.  And I’m really exhausted from having to live it.  Every.  Single.  Day.  Two years ago, I would never have described myself as a “health nut.”  But…I really believe that these things are critical when you have significant toxic exposure.  And, probably even if you don’t.

I encourage you to take what you want from this, and dismiss what you don’t.  But I promise you this…if you actually DO every one of these five things...you will feel better than you do right now.   And if you don’t…well, I’ll send you a box of my favorite gluten-free granola bars and my apologies.

In the end, more than all of these products and practices though…I know it is the Lord alone who builds the house.  Our bodies are His temples…and we can only do so much.  Ultimately, He is the one who does or does not grant us health.

We would so appreciate your continued prayers for our family as we walk this long hard road towards healthy.  Some days, I feel good.  Most days…I don’t.  Some days, I feel absolutely miserable.  I am learning that the same God who gives us the good days…also gives us grace to endure the bad days.

Thank you so much for your prayers and support.  Most of these things would not have been possible for us to do or buy…were it not for the love and support of so many people who have loved us through this time.  And we are so grateful for you.

With love,

The Zeller’s061514350013

 


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A Broken Down Carriage

I do not remember 2013.  It began with death.  And ended with death.  And there was the deep sorrow of death in between.  Baby Charlie died on January 27th…hours before his big brother’s 3rd birthday.  And then, when I was almost certain we couldn’t endure any more suffering…our June baby died…the week of Emma’s 6th birthday.  And then, when I was absolutely certain we couldn’t handle more pain…our last little one died the week before Thanksgiving 2013.  Thanksgiving no longer came easy.

All I remember of 2013 is tears.  And aching sorrow.  And so very many baby graves. Sometimes I look back at Instagram pictures of last year and think, “Oh, yeah…I DO vaguely remember going to Disneyland at Christmastime.”  But mostly, I just remember raw, searing pain.

That…was 2013.  And if I had to put it in a nutshell, 2013 was the year of breaking. The year of being broken, beyond anything I had ever dreamed, in even my worst fears for my life.

And I am still broken.  There is nothing fun about losing almost every single thing you owned.  Nothing fun about dealing with endless doctor’s visits, with the very real threat of cancer looming over your life every single day.

But this year…is not broken.  Not by comparison at least.  There is nothing in all the world that was more breaking, than burying a perfectly healthy, beautiful baby boy, who would have lived…if only he hadn’t been stuck in my body.  Nothing.  Nothing more breaking than spending the last pennies we had left…going to fourteen doctors who couldn’t even tell us why.  Nothing more breaking than facing the deepest fear of our lives, and then risking what was left of our shattered hearts and broken faith on trusting God for another baby and then another…only to stare into more babies graves.

By comparison to 2013…2014 has been rainbows and unicorns and smiley faces and sunshine.  But it is still the second hardest year of our lives.

If 2013 was being broken, 2014…was being sick.

I have been sick every single day of 2014.  I was so incredibly sick in January.  And I actually got a whole lot sicker after we moved out of the Mold House…which is almost always the case.  When you are living, day in and day out in a dangerously toxic environment, your body eventually starts to shut down.  You are no longer even capable of even reacting to the toxins, because they are bombarding you so quickly. But once you leave a toxic environment, and actually begin detoxing…you start to be highly reactive to everything.

And since moving out of the toxic environment of our old house, I have become, for lack of a better word…the proverbial canary in the coal mine.  Long ago, they used to send tiny birds into coal mines to measure air quality.

And now…you can do the same with me.  Before we moved into the Mold House, I wasn’t even allergic to mold and mycotoxins.  Now, within an hour, I can tell you with absolute certainty if an environment has toxic mold in it.

This is a very unfortunate reality…particularly for the canary.  Because once I am exposed to mold and mycotoxins, it takes my very weakened immune system months to recover from the coal mine.

After we moved out of the Mold House, I began to feel this glimmer of hope flickering to life in me.  Hope that we were actually going to be ok.  Hope that once we got rid of everything we owned that had been exposed to the Mold House…the horrible reality of being poisoned by our house…was something we could finally put behind us for the rest of our lives.

But it simply wasn’t to be.  For one, because the mold was still in us.  It needed to be drawn back out, and detox takes months and years to complete.  And two, because mold is just a very real part of life in this broken place.  Every single house in America has mold.  And some of those houses, due to water damage from leaking roofs, and water heaters, and jacuzzi tubs, and dish washers…have mold that has turned toxic.

And you can almost never, ever see it coming.  A good mold test, by someone who actually understands mold and mycotoxins, costs upwards of $1,500.  For the most part, all you can really do is send the canary in…and wait and see.

For now, I know that our new house is safe.  I know this because if it wasn’t…I would be struggling with temporary blindness, and neuropathy so bad that I wouldn’t be able to move or speak.  That’s what happened the last time I was reexposed to mold in June.  And I’ve been sick every day since.  But I am thankful that I at least finally know what a reaction feels like.  Which is really helpful when you happen to be the weary canary.

But that doesn’t mean that this new house will always be safe.  Three weeks ago, our dishwasher leaked all over our kitchen floor.  Two weeks after that, our brand new washing machine leaked all over our laundry room late one night.  And then, as if that Satanic onslaught wasn’t enough…the very next day I walked into our bathroom and found water pouring down our bathroom sink.  The sink was on full-blast and stuffed with toilette paper.  And there, in the midst of that grizzly, mold-ripe scene, was Barbie and Minnie Mouse and the Little Mermaid, taking a luxurious bubble bath together in the middle of the day.  It looked exactly like a scene from Home Alone, and as soon as I saw it, I began to weep.

It’s not easy to be a canary…when your two-year-old happens to be the the third member of the Wet Bandits.  It’s not easy being the canary…and living in a world full of water heaters, and dish washers, and washing machines, and imaginative and rascally two-year-olds…who can turn on you at any point.  And I will unfortunately always be in danger of toxic mold exposure once again destroying my body and our lives.

And so will you.

Honestly, it is enough to drive me to insanity.  The fear of it…will always be there.  And right now, I’m dealing with the both the fear…and the reality.

I have been sick every single day of 2104.  Some days I am so sick that I cannot even see or move or speak.  I have learned to do life…sick.   I go grocery shopping…sick.  I take my kids to the beach…sick.  And perhaps hardest of all…I have quiet times… sick.  I sit there with my Bible, and the shattered remnants of my soul, trying to figure out how to walk with God after the aching pain of 2013, while battling against the sickness of 2014.  It’s hard to talk to Him right now.  It’s hard to believe that He has anything left for our lives besides suffering.

And though my kids are feeling well and doing well for the most part…when Mommy is sick…it becomes a suffering that hits our entire family.

The other day, I was sitting in the Time Out chair.  I’m not even sure how I got there, but I just really needed a break, and that miniature aqua chair just looked oddly restful and inviting.  Suddenly, little Sophie came up to me and put my face in her hands and said in her sweet little voice,  “Mommy needs to rest.  Because Mommy is so sick all of the time.”  

I sat there, in the Time Out chair, and started to cry.  At the tender age of not-even-three…her mommy has been sick or grieving for almost every moment of her entire life.  Our sweet little Sophie hasn’t even really met me healthy.  And I can’t even tell you how many times I have had to tell our kids that I can’t do something or go somewhere because, “Mommy is sick.”  I had never, ever, ever…thought this would be our lives.

Which is perhaps the hardest part of our sickness.  I did not see it coming.  Much like going in for a normal check-up and suddenly finding out that you have cancer…there was absolutely no warning that suffering and sickness were about to take over our entire lives.

But it has.  And in light of that, there are two things I wanted to say.   The first is about the new To Do List I face each day.  The second is about my heart.  My new, broken one…that I also have to face each day.  The first matters a little.  It matters, for sure.  But it only matters for our time left on this earth.   The second one…well, it’s everything.  My heart matters for eternity.  Because this is the heart I have to live with the rest of my life.   The one I will love (or not love) God with.  The one I will live out of every single day in this broken Land…and then drag all the way into my Forever life.

Many people have asked us what we DO.  What things we actually do day to day, to fight against mold exposure, compromised immune systems, and our suddenly broken bodies.  I will write a separate post about THAT… because it feels boring and newsy, but honestly, probably very important to get down “on paper” at some point.  If it could, in any way, help people who are suffering from this same thing…it is worth it to me.  So, that’s coming.

But what matters far more, what fills my mind each day, and keeps me up at night…is my broken heart state.  The real question, the one that haunts me every single day, as I battle with a broken body on the outside, and a broken heart inside is… “AM I going to be Ok?”  “Am I going to believe in God, by the end of all this suffering?”  And I don’t mean, “Am I going to believe in God…in two years when He heals my body and gives me my rainbow baby?”  I am long past expecting that pretty little bow and happy ending to this story.

What I mean is…“Am I going to believe in God and walk with Him…EVEN. IF. HE. DOESN’T?

Am I going to believe in God…if I have to live with this much physical pain for the rest of my life?

Am I going to walk with God…even if all He gives me to do or bear…is bear this pain?  If I never get to bear…another baby?  If I never get to bear…a happy ending?  If only…I bear pain?

Am I going to honor God…if I do not get to die of old age at ninety-three, while holding hands with Reid?  Will I honor God, if I die of cancer or heart disease, in months or years…instead of decades?

These are the questions that are really on my mind.  And they never really leave my mind…because I hear them when I’m in pain.  And I am always in pain.  It’s on my mind…in the grocery store.  It’s on my mind…when I’m with the kids at the beach.  And it’s on my mind…as the tears drip down on my Bible each day.

And sometimes, just sometimes…God speaks to that deep place of pain.

A few weeks ago, I was so sick we couldn’t even make it to church.  We decided to listen to a sermon by John Piper on suffering.  Right now, sermons on suffering…are my love language.  Especially by people who have suffered.  Especially by people with the spiritual courage and Biblical integrity to believe in God’s sovereignty over suffering.  It was a good sermon.  And at the end of it, God gave me an incredible and unexpected gift.  The gift of a story.  Piper shared a story that John Newton had once told.  It was short.  But extremely timely.  And I’ve thought about it every single day since I heard it that Sunday.

Newton said,

“Suppose a man was going to New York to take possession of a large estate, and his carriage should break down a mile before he got to the city, which obliged him to walk the rest of the way.  What a fool we should think him, if we saw him ringing his hands, and blubbering out all the remaining mile, “My carriage is broken! My carriage is broken!”

It is a simple story.  But the depth is not lost on me.

I.  Am.  Going.  To.  A.  Large.  Estate.

A mansion is waiting.  A place of no pain.  A place of endless joy.  A place where God will pick me up out of my little aqua Time Out chair…and wipe every salty tear from my eyes.  A place where I will finally go to the beach with ALL of my kids…and my body will not ache with pain.

But I am not there yet.

And I live and wait…in a very broken carriage.  I carry around a body that aches with chest pains, and neuropathy, and a raging sinus infection, and inflammation from the crown of my head to the tip of my toes…every single day.

And I feel forced to walk, or rather drag, this dilapidated carriage down what has become a very long road to eternity.  Right now, from where I’m standing, I can’t even see the estate.  I am completely taking it’s glorious existence, and all the promises hidden within…with a mustard seed of faith.

But luckily, the existence of such a place…is not dependent upon my faith.

I am asked, only to believe.  To trust the One…the only One…who has been There.  To believe it is coming.  And to wait in my broken carriage.

Mostly, I want to wring my hands and blubber.  I want to bang my hands against the glass ceiling of Heaven and scream with all my being, “I cannot endure even one more day!”  

But, it doesn’t change what’s coming.

An inheritance awaits.  One so glorious that it is taking 2,000 plus years to put the finishing touches on such a place.  And One so glorious, that He has earned the right to ask each and every one of us…to trust Him in the wait.  He died to earn that right. He deserved our trust…even if He hadn’t.  But He broke His very own carriage…that we might trust Him with this wait.

And so…I wait.  Some days, wringing and blubbering.  (Ok, most days, wringing and blubbering.)  But somehow, by His grace, believing on even the worst of days…that a glorious inheritance is coming.

Some days, that is all I believe.

And yet, it’s everything.

Because some day, each and every one of our carriages…are going to break.  Beyond repair.  And suddenly, we will look up…and there it will be.  Finally, not a distant mirage, no longer around the next bend and beyond our line of sight.

It will be right there for the taking.

The Inheritance of faith.

In the One who gave it all.

That we might have more than this pathetic world full of mold and graves and sorrow and pain.

And so we wait, some of us zipping along happily in our healthy, whole, little carriages…temporary though they may be.  Some of us, bruised and bleeding…pretty sure we will limp all the way to the finish.

But each of us, who are in Him…waiting on the same glorious Thing.

Eternity.

At our Estate.

With our King.

 

I want to dedicate this post to my uncle Duane Runke…who left this world this August for the glorious inheritance that awaits.  He fought the good fight of faith, with the sorrows of broken carriage.  And finally, he is free.

 


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When Rocks Speak

Every morning, I wake up inches from someone’s tiny face.  Most days, it’s to Fred’s impossibly long lashes and delectable cheeks.  And it’s usually accompanied by some super important announcement.  Like this morning, when Freddo announced in his cheery stage whisper, “Mommy!  I found a new freckle behind Sophie’s ear!  I found it while she was sleeping!”

And that’s how I begin my days.

On one hand, I’m so incredibly thankful for the three alarm clocks that God has kept in our lives, who bring so very much sunshine to our dark days.  On the other hand, mornings are still really hard for me.

Especially in the deepest throes of grief…waking was the most painful moment of every day.  Waking up and having to remember all over again, day after day, that all of it…every horrific moment of the last two years of life…actually happened to our family.

There have been so many months where I have absolutely hated waking.  Sleep is just so deeply disorientating.  And waking up to our broken, bleeding, aching life morning after morning…has not been easy.

Lately though, most mornings my first thought isn’t on what we have endured…but on what we have coming.  I usually wake up now and think, “One day closer.  How many more until eternity?”  

Even as I write that…it sounds hyper-spiritual.  But it’s so not.  I’m just in the Land of Forever Sad…on a very big countdown to Happy.

I’ve learned that this is really the only way to take on an endless stream of really horrific days.  And this summer, though filled with so many good things that we really needed, like lots of rest and reading and long runs on the beach…has also been filled with pain.  Lots of physical pain for me, because of my recent re-exposure to mycotoxins.  But also, lots of soul pain.

And last Sunday…was one of those days.  Fred must have slept in that morning, because Emma was the one to wake me.  And she tiptoed into my room with far more than Sophie’s freckles on her mind.

Well, she sighed, “You’ve probably heard from Uncle Pete that I’ve got questions.”  

At bedtime the night before, while we were out on a date, Emma had had some very serious questions for her Uncle Peter.  He had thought he was just agreeing to tuck her into bed.  But bedtime around our house is usually a crash course in theology.

“Uncle Pete, I just don’t understand.  Why has my family had to suffer so much?”

“Uncle Pete, Is the mold a penalty God has given my family?  Because it FEELS like a penalty?”

You know, typical seven-year-old stuff.

And last Sunday, as she climbed up on my bed, I knew it was going to be a tear-filled morning.  She looked at me with those huge brown eyes and said, “I have just experienced so many hard things.  And I am afraid that so many more hard are coming.”  

Yeah.  Me too.

“I am so scared.  Are more babies going to die?”  Are you going to die Mommy?”  

I wish I knew, Ems.  I so desperately wish I knew.

I cannot stand pat and breezy Christanese thrown at my own unanswered questions and aching pain…so I am certainly not going to dish those out on a tender little person whose been forced to ask the same things.

So, what DO you say?

We talked about Job…I skipped the G-rated Children’s Bible version and told her everything.  We talked about faith…I told her that faith isn’t believing that if you pray and give God your “desires of your heart list” (read: list of demands) He is in any way obligated to comply.  And I told her that as much as I wish it were not true…eventually we are all going to die.  Some soon, some less soon, but all of us within our lifetimes.

But mostly, what raced through my mind as I sat there with my precious girl who actually will have to grow up in a world full of so much pain she can’t escape…were rocks.

Yes.  Rocks.

For most of the summer I’ve been on a “Social media/Technology Fast.”  I don’t have too much to say about that, except that it was lovely.  I didn’t miss it.  Any of it.  Ever.  For the most part it was totally wonderful and completely liberating to step back from all of the noise.   I know I wouldn’t have liked it for a lifetime, but for 40 days…it was an incredible gift God gave our family.

But there were days, especially the days when I was the sickest and struggling the most with the horrific symptoms of neuropathy…when it was also very lonely.  I didn’t miss the means of connecting with people, but sometimes I did miss the connecting.

And since Facebook and Email and Instagram and Texts have become one of the main ways the Body of Christ actually connects and speaks into one another’s lives…it felt like the Body of Christ had gone silent in some ways.

It wasn’t that God had no ways to speak to me.  He spoke to my heart through His Word.  He spoke to my heart through family and friends I saw in person.  And He especially spoke to my heart through Reid…who was with me so much that we went a whole glorious week without even texting, because we were always in the same place.

But perhaps the most surprising way He spoke to me in all of the silence of those forty days…was through rocks.  Well, stones, technically.

After being re-exposed to mycotoxins in June, my body totally began to tank.  It felt like I was watching all of the health I had fought so hard to regain, completely slipping away from me.  Enter an onslaught of new symptoms and drugs and blood tests, all of which were frustrating and exhausting.

On the worst days the neuropathy was so significant that I could barely talk, move, or see.  And there I was, in such incredibly scary pain, and I was talking to almost no one.  No one except my doctor.  Everyone else was on radio silence…and she was on speed dial.

I am so incredibly grateful to have a doctor who actually knows enough about mold toxicity to know that neuropathy is a common, though horrific symptom of poisoning.  She didn’t minimize my symptoms, or throw around sunshine about how this was all “going to be ok.”  Neuropathy…can be for life.  The vision problems I was having...can lead to blindness, permanent or temporary.  And not being able to move…is just plain terrifying.  And after two weeks of my slide into the abyss of neuropathy…I was a wreck by the time I went in for my next appointment.

One thing I like about this doctor is that she’s not one to break out the Kleenex box.  She didn’t cry with me or beat around the bush.  But she did say something to me that was deeply, deeply sobering.

“You have been hit very hard by this.  And I know how scary neuropathy can be.  I also think that you have been so lucky.”

Ok…where is she going with this?  Because the LAST thing I feel is “lucky.”

“You have so many things going for you.  You are the ONLY one in your family who is still struggling with toxicity…and that COULD still be true of your entire family.  You and your husband have stayed together through something incredibly trying.  One of the worst things I have seen in so many patients is that it is incredibly difficult to survive this together, and you are still together and surviving.  And it seems like you have an incredible network of people who have helped you in unprecedented ways to get the help you need.”

There I was, in the middle of my doctors office, who….though she is an incredible doctor…has never once given me the impression that she shares my belief in the God of the Bible and His supreme goodness and sovereignty.

And it was like the rocks were speaking.

And I started to cry.  I just kept thinking of that verse in Luke 19…

And some of the Pharisees in the crowd said to him, “Teacher, rebuke your disciples.”  He answered, “I tell you, if these were silent, the very stones would cry out.”  

She may as well have sat there and said, “God has taken care of you.  Even I can see ways that you have been so loved and protected in this, in spite of everything that has come your way.”

I have no idea what my doctor believes, about, well, much of anything…besides mold toxicity.  It honestly isn’t the point.  I sat there in that doctor’s office, on one of the lowest days of my very low life, and God reminded me of His goodness through her.

“I AM…And I CAN STILL SPEAK. 

I AM…taking care of you.  

I AM…protecting you from a billion things you can’t even see.  (Probably because you are so busy looking at all of the things I have chosen not to protect you from at this time.) 

I AM…even so obvious about it, that even your doctor can see.  

And I AM…the God who uses whomever I WANT to speak.

And then, she said something else.  Something only the God of Rocks would know I needed spoken to me.

She said, “I know this is bad and I know this is scary.  And there have been some very bad days.  But whenever you have one of THOSE, you HAVE to stop and tell yourself…

“THIS…is a bad day.  And more are probably coming.  And there will be good days someday.”

By “Someday” she probably meant lower-case “someday”…that shaky someday that mocks my days…the day when toxic mold is not constantly destroying our entire lives.

That’s what she meant by Someday.

But I knew what He meant by Someday.

And I’ve been thinking about it a lot lately…especially on all these bad days.

I hate that my seven-year-old has the weight of the entire world on her fragile little shoulders.  I hate that she has to worry about more babies dying…when all around her, all her little friends are getting fat, healthy baby siblings.  I hate that her childhood has been filled with watching mommy take her daily B12 injections, and Mommy go to doctors, and Mommy cry in pain.  And I hate that I can’t even tell her, “Mommy isn’t going to die sweetie.”

But…can you?

Can any of us, honestly, make such a ridiculous promise to the people most precious in our lives?

No.  Not really.  Much as we wish we could.

And so…I made her the one promise I could keep.  I held her in my arms, as the salt poured down the freckled cheeks that have seen far too many tears for such a short life  And I said,

“Emma, I am not sure of much.  But I am sure of this…

“THIS…is a bad day.  And more are probably coming.  And there will be good days someday.”

And that…is pretty much the only thing I don’t hate about suffering.  That even on the worst days, especially on the worst days, when He’s short on material and only stones can speak of His glory…He speaks to me.  And says the one thing that really matters, the one thing we all need to hear and believe to truly make it through this life…

There will be good days.  Someday.  

And He is worth this long wait.

But the wait is not easy.  And lately especially…the wait has felt really long, and my faith has felt really weak.  And I wanted to ask you to pray.  To pray for my heart in regards to the Rock.

We live in a town with a very big rock.  The other day I met a new friend at church and she asked me where we lived.  I said, “We’re the house closest to the rock.”  I didn’t think anything of it, until she called me later that week and said, “I’ve been thinking…did you mean more than JUST that?  Like you might really be the house closest to the Rock?”

Umm…No.  That would be cool.  Cool to say that.  Really cool to think.  And even cooler for that to really be true.  But most days I feel like we are actually about ten billion light years from the Rock.  Like anyone and everyone are closer to the Rock than we are at this point.

No,” I said, “I just meant that we are literally the house closest to the rock.  Not…The Rock.

But it got me thinking.  Never once, in all of these months of living in this house, have I thought about how close we are to that ridiculously huge Rock.  Of all the moments in life to live so close to a weirdly big rock…this one takes the cake.

Most days, I can’t even see the Rock.  It’s literally right out my window, but there is so much fog in our town that usually I look out the window and see, well…absolutely nothing.

Such a picture of my faith.

I know that there are people who read this blog and wrongly think our faith is astonishing.  But it’s not.  It’s really, really, really not.  Most days, I feel like I am literally being choked off by a fog so dense that I can barely breathe.

The fog of chronic pain. The fog of unmet dreams and hopes and plans that I had once had for our little family.  The fog of so many tearful Sunday mornings, when my children have to ask questions that most adults may not even get to in their lifetime.   The deep fog of grief over our precious babies.  And the really deep fog of my shattered faith.

But if there is one thing I’ve come to realize after six months of living in this little sea village that always smells like fish, with barking seals, and a fog horn that wakes me up every morning…

Whether I can see it or not…the rock is always, always, always there. 

Steadfast.  Immovable.  Strong.  Looming.  Even terrifying at times.  But always unmoving.

Half of the time I cannot even see it.  Not even a shadow.  Not even a glimpse.  If I didn’t know any better, I would swear that there was not a big Rock towering right beside me.  All I see…is fog.

And then, all of a sudden, the sun comes out, the fog lifts, and it is there.

He is there.

Where He’s always been.

Speaking to me.

As only Rocks can speak.

 


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Fountain Drinks

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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Walking Alongside Those Who Suffer

This last fall, a friend of Emma’s lost her mommy to cancer.  Little Jasmine was only five years old, and she had to bury the most important person in her universe.  There were many tears in our home that day, and Emma asked if she could give her friend a sympathy card.  It seemed like an important card so I asked her, “Would you like me to help you?”  Without a moment’s hesitation she looked up at me and said, “Mom.  Don’t worry….I KNOW what to write.”

And of course, she did.

"Dear Jasmine,   I am sorry.  I am so very sad.  I love you.  Heart, Emma."

And that…was it.

And that…was everything.

Because she gave what she had.  And she said everything that mattered.

Sometimes I wish that Emma didn’t know exactly the right thing to say in a sympathy card.  Sometimes I wish that she didn’t know how to hold someone tenderly while they are grieving…and I especially wish that I was never the person she had to hold.

And at the same time…we have completely failed as parents if we raise kids who are cool, and fun, and popular, and interesting…if they are not kind. Because if they’re not kind…if they’re not deep and thoughtful people who have the soul-capacity to weep with others, and if they’re not people who can truly walk alongside those who are hurting all around them…then what in the world are they going to have to offer?

What in the world are our kids going to bring that actually matters…to a world that is bleeding out literally everywhere…if they do not know how to help when others hurt?

Because our kids live in a world where every single person they meet…is going to die at some point.  And most of them…are probably going to suffer long before they get there.  Sadly, little Jasmine is probably not going to be the last of my kid’s friends who has to suffer through the heart-wrenching loss of a parent.

I don’t want to be melodramatic, but this one of the hardest realities of life that every single one of us…is destined to suffer.  At the end, for sure.  And many of us, along the road that takes us there.

This is the deal.  This is the deal we made, when we joined this hurting and broken world.

This was the deal made for us…in the Garden long ago.

A few weeks ago, I was in the middle of the arduous task of scrubbing Emma’s head with our “Mold Shampoo.”  The shampoo is a thick, black, sticky-goo, literally made out of charcoal, and it’s basically a wonderful way to have conflict at bath time.  (And who in the world isn’t looking for a little more of that?)  As I wrestled the shampoo into her hair, Emma suddenly burst out, “I hate this mom!  Why do we even have to live in a world where there is mold!”  

I then explained once again about Adam and Eve, and the snake and the garden, and sin and salvation, and the Gospel and God.  I was feeling pretty good about my theological conclusions when I suddenly looked down at those big brown eyes, surrounded by thick, black charcoal suds, and slowly filling with tears.  And then she said, with all the quiet vengeance of a woman scorned, “That Adam and Eve…they ruined EVERYTHING for us.”

You could have heard a sud drop.

Because there it was.  Gospel truth. Right there in the bathtub.

I’m sure that if any one of us had been given 24 hours in that Garden…we probably would have landed ourselves in the same big mess.  But what a mess it is.  We live in a deeply painful world where children get sick from neurological toxins, and babies die in their mommies wombs, and little girls have to stand alone by the gravesides of their mamas.  And though it is sometimes filled with beauty…this world is also filled with an astronomical amount of suffering and sorrow.

And because that is true, it’s critical that we who are His actually know what to do when we are sitting in funeral homes and hospitals, and staring at broken hearts and blank sympathy cards.

A number of people have asked me to share ideas on how to come alongside those who are suffering around them and I have two thoughts on this…

1.  What to do.

2.  And why to do it.

Whether a person is suffering from a broken body or a broken heart, I think the ways that they need to be loved are often very similar.  Because whether you are suffering from grief or struggling through chronic pain…you suddenly find yourself in a foreign land.  You went to bed one night in a bright, happy, hopeful place…and woke up the next morning in a strange land full of aching pain and dark shadows.

And you, quite possibly…are never going back.

I never realized how much chronic pain is actually similar to grief…until I went through both.  At the same time.

Both, are the shadowlands.

Both, force you to live in one world…while everyone around you, seems to skip merrily along…in your old world full of life and hope.

And both…are a death.  A death of dreams.  A death of plans.  A death of capacity.  A death of relationships.  And a death of faith…at least faith as you once knew it.

I remember laying in bed the first day after Charlie’s death and thinking, “Nothing, nothing, nothing…will ever be the same.”  And it wasn’t.

Every single one of my dreams for Charlie’s life…was over in one single heartbeat.

But what I didn’t realize in that moment…is that so many of my dreams for my other kid’s lives…were gone forever as well.

My sweet Freddo turned 3 years old…the very next day after his baby brother died.  Which means that in the brief 365 days between his 3rd birthday, and his fourth…Freddo attended the funeral of the brother who was going to be his forever bud, experienced the total soul-incapacitation of both of his parents, watched us bury two more babies that same year, and saw his mommy get so sick with toxic mold poisioning that she couldn’t even get out of bed for far more days than I can count.

And then…he turned four.  And the day after his fourth birthday…we found out we were being slowly poisoned by toxic mold, and had to get rid of almost every thing we owned.  All of those beautiful new birthday presents Freddo had just gotten the day before…went right back out the front door.  And that…was basically Freddo’s third year of life.

But the worst part, is that that was Freddo’s only third year of life.  And Sophie’s only first year of life.  And Emma’s only fifth year.

And you can buy a bunch of new stuff…but you can never, ever…buy back a year.  It is just plain gone.

And I know that so many people who have suffered the loss of a loved one, or who have walked through chronic pain with a house full of small children, feel exactly as I do.  Something deeply precious was lost…TIME was lost…and you don’t get it back.

You may get new days…but you will never again get those days.

And it hurts so incredibly much.

And so…my first piece of advice on how to come alongside others who are suffering is…

Help multiply the time they do have.

*Babysit their kids.

*Wash their car.

*Buy their groceries.

*Run to the bank for them.

*Clean their house.

When you are so sick you can barely move, or when your heart is so broken you can barely function…you don’t want to be cleaning your tub with bleach.  Clean it for them.  I have a memory from my childhood of going to a woman’s house whom I had never met before, and helping my mom clean her dirty bathrooms.  She was dying of emphysema and in so very much pain, and all I kept thinking as I scrubbed this strangers bathroom, and listened to her hacking cough was, “I’m so very glad that I am doing this…and she isn’t.” 

The same is true for errands.  When you are sick, and I mean paralyzingly sick, and have been given no promise that it is ever going to end…the last thing you want to do is spend the little strength you have…on grocery shopping.  I hated going grocery shopping after Charlie died.  Grocery shopping is a remarkably social endeavor, that someone may simply not have the emotional or physical energy for when they are in chronic pain or the deepest months of grief.  And they still have to do it, because you have to eat to live.   Shop for them.  Tell them, “I want you to make me a list.  I will pick out only the juiciest oranges, and the crispest apples, and I’m going shopping for you Tuesday, and you can’t say no.”

It doesn’t even matter what you do…just take something off of their plate for them.

Because their plate is FULL.  Full to the brim with a bunch of truly miserable things…that yours most likely isn’t filled with.  Doctors appointments…grief-counseling appointments…hours laying in bed in either physical agony or deep soul anguish…hours spent weeping on the floor.  Every one of the those words…pretty much describes so many of my days for the last year and a half.

And through it all, I still had three small children who needed baths, and prayers, and help with their homework.  My life was full of things from the land of shadows, and I didn’t have much left in me for my “old life” I still had responsibilities in.  That is why it meant the absolute world to us…when people offered to babysit.  There really should be a sixth love language entitled “Free Babysitting for Those Who Need It.”  (And that, by the way, is literally EVERY parent I know.)  I am crying even now, as I think of the incredible friends, and family, and college students who have babysat for our family over this last year.

Two weeks after Charlie died, Reid had to go back to work and I vividly remember thinking, “I can’t even function I am in so much pain…and I have to take care of three little people.”  And grief, much like chronic pain…cannot be scheduled.  It.  Just.  Happens.    And one day, it happened to hit hard.   Sophie really needed a nap, and was clinging to me like a tiny koala with sharp claws.  And I could not stop the tears.  I remember being so desperate for just five minutes ALONE to cry…that I literally escorted Sophie to the far corner of the house, got her distracted with a toy, and then ran as fast as I could to the other side of the house, slammed the door and locked it…just so I could cry for five whole minutes alone.

I got about four.  And then, I heard her pudgy little fists pounding on the door.  “Mommy!!! Let me in!  Mommy I found you.  Let me INNNNNNN!”

That…is when you call the babysitter.

And I did.  And she came. And she gave us hope…hope that we could at least get through one more day of the Shadowlands we now found ourselves in.  Babysit for them.  You’ve probably got far more energy for their kids…than they do.  And it will mean the world to them to have a break from their normal life so they can focus on their side job of suffering and sorrow.

I don’t want to paint this picture that we have tons of babysitters floating around our house…because we don’t.  We have a babysitter for date night, and sometimes on Tuesday mornings.  And they are an incredible gift to us.  But what mattered most…especially in the most painful, early days of grief, and the worst days of mold poisioning…is that we had people who were willing and able…to come when we needed them most. 

And they made it easy for us.  And this is critical.  Hundreds of people have offered to help our family through what has become our life of one catastrophic loss after another.  But the MOST helpful things…the things that actually panned out, and really, truly made a difference…happened when people made it easy for us to have their help.

Our friends who gave us a gift card for a date night after Charlie died…and then actually came over with their kids and babysat ours.

Our friends who offered to start a “Meal Train”…and then made it easy by sending us the completed list of who was coming and when.

My parents who offered to clean our whole house with ammonia until their noses literally bled from all the toxins…and then actually did it.

Our friends who literally brought over pillows, and blankets, and a change of clothes the night we found out that everything we owned had to go…without us even asking them to.

That…was helpful. 

My point…is that offering to help…is not helpful.  HELPING is helpful.  Saying you’re going to do it, and then saying, “I’m putting it on the calendar,” or “This is when I’m coming,” or “I”m really wanting to take your kids for you, will next Tuesday or next Thursday work better?”

Words…are simply not enough.

There were so many times when people would offer to help and I would think, “If I have to HELP YOU HELP ME…this isn’t going to be very helpful.”

What you do…probably doesn’t even matter.  Just DO something.  

This is especially important…after significant time has gone by.  Your friends who perhaps most need your help right now…are not the ones who just found out they have cancer.  It’s the one’s who’ve had cancer for months.  And everyone else’s life has moved on from the shock of their diagnosis…and their’s hasn’t.  They are still in the shadowlands.  They still have cancer.  Their organs are still shutting down.  And they are still weary, and exhausted, and overwhelmed, and in an incredible amount of physical pain and soul despair.  And it will still mean the world to them…for you to bring them a meal, or buy their groceries, or take their kids to the park.

I can tell you that this matters…because it still matters to us.  We are not longer completely broken, and bleeding, and laying on the floor…but we are also not exactly thriving.  We are in that middle, no-man’s land…where we are not “there”…and we are not “better.”  And even now, as I type, an amazing college student is watching my precious ones so I can sit at this coffee shop, and write this blog, and figure out our medical bills, and connect with the Lord.  So that when I get home…

I can be all there.

And that, is my point.  Because when you experience the loss of someone you deeply loved, especially the loss of child…you are simply no longer all there.  You, whether you like it or not, have been called to grieve and called to suffer, and it takes an incredible amount out of you.  A part of your heart…has permanently left.  Left for the land of Shadows.  And you cannot avoid that journey…because grief forces you there.

But also, a huge part of me…has moved to heaven.  My heart moved to heaven when Charlie died last year.  And I bought a house there when his little sibling died in June.  And built a playground in the backyard when the next baby died.  And in February, when I got so sick that I couldn’t even function anymore…some days I would just lay in bed and cry out, “Jesus, please just take me Home NOW!”

Because grief and suffering took me to a place I had never wanted to go before. It took me to the land of, “Please God,  Anywhere…But Here.”  And when Charlie died, for the first time in my life, my immediate longing for Heaven…completely surpassed my appreciation of earth.

I want to be clear…I did not want to take my life.  I just no longer wanted to live.

And if that sounds crazy to you…well then, you’ve just never been in so much physical, or spiritual, or soul pain that you’ve gotten there…yet.

But you may.

And even if you don’t, I am quite certain of this…

There was once a beautiful garden.  And it was filled with beautiful, but fragile people.  And a lovely tree, and an ugly snake, and a world of trouble.  And we’ve been in trouble ever since.

And if you live long enough, and love deep enough, your life will soon be filled with beautiful, and yet broken and fragile people who are suffering deeply under that wretched curse from long ago.

And you…have been given the power to help.

In fact, if you are His…you have been given Help Himself.  Because He lives in you.  And that same Spirit who Jesus promised to be a “Comforter,” and an “Encourager,” and a “Friend,” will be those to someone else…every time He moves your limbs to clean their house.  And every time He moves your car to drive to Trader Joe’s so they don’t have to.  And every time He gives you the joy of babysitting their sweet kids.  And every time He moves your heart to write that note.

And all of these “things to do” are so important.  They are love in action.  

But we have also been deeply encouraged by people who live thousands of miles and even continents away from us…who took the time to love us with words.  You don’t need lots of eloquent words.  You don’t need a little sermonette filled with Bible verses and profound theological thoughts…in fact, it’s probably better if you don’t.

You just need to tell them how you feel.

Tell them, “I feel so angry that this is happening to you.”  Tell them, “I feel so very sad, I cried all morning for you.”  Tell them, “I love you and I wish so much that this wasn’t your life, and that I could take this all away from you.”  Tell them all of THAT…because they FEEL those very things too.  And you’re saying it…will make them feel less alone.

And that is ALL you can do.

Because you can’t take this away.  You can get sad, and angry, and devastated, and discouraged that this is happening to them…just like they do.  And you should.  Because that stupid curse has made this, for the most part, one miserable world to have to suffer through.  But all you can do is be there with them in it.

And that…is enough.

Because Someone else has promised to someday end this suffering once and for all.

And until then, He has a plan to make Himself known through every single pain and every single sorrow and every single grave and every single tear.  He will not waste a single one.  I have cried so very many…and I am clinging to the promise that He doesn’t waste our tears.  And I am banking on the promise that He doesn’t waste our wounds.

He uses them.  He glorifies Himself through them.  He calls us to them.  Sometimes He even calls us out of them.

And sometimes He calls us to live in them.  For some of us…He calls us to Suffer.  And for those all around us…He calls us to Help.  And we will all, sadly, take turns in these roles, many many times over.

And if right now you are one of the people who are being called to Suffer for the glory of God…ask people to pray for you.  And then ask HOW they are praying for you.  And to never STOP praying for you.

And ask people to help. Send them to this blog, and tell them I told you to ask others to do these things for you.  Because you are precious to Him.  Especially in your pain and your brokenness and your suffering…you are so very precious to Him.  And He has not forgotten you.  And He had made the Body of Christ…to be His most poignant reminder of that fact.

And if right now you are not one of those who are being called to suffer…then you are being called to Help those who are.  Not because you have the gift of “mercy,” but because you have the gift of His Holy Spirit.

Close your eyes, spin around three times, open them, and point.  I am SURE you will find someone within the hour who desperately needs your help, your encouragement, and your prayers.

Or maybe even just a note.

And don’t worry about what to say.  Just trust Emma on this one…

"I am sorry.  I am so very sad.  I love you.  Heart."

It’s just twelve little words.  And yet the very heart of walking alongside those who suffer.