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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