charlie's song


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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>