charlie's song


14 Comments

I Guess I’ll Just Eat Worms

I’ve known this post was coming, but it’s one I have dreaded writing.  We have received many emails asking what our specific symptoms are, and what our treatment plan will be. I know that one of the scariest parts of our story is that it really could happen to anyone, because toxic black mold is something you almost never see.  It lurks under the surface, hidden in walls and ceilings, slowly destroying your lives.  And you never even saw it coming.  I know that our story has made other people wonder if they too are unknowingly being poisoned by toxic mold, and if we can help even one person, this post is worth it to me.

We’ve also had many questions about how we ever even figured this out in the first place.  I want to answer these questions.  Not because I feel like answering them…because a huge part of me just plain doesn’t.  This is a hard thing for me to write about.  It’s hard to write about because it feels boring and newsy, and the kind of thing you would tell your doctor or your mom, not a few thousand total strangers.  But more importantly…it’s hard to write about, because it’s extremely personal.  And strikes very close to my aching heart.

But I really believe that there are people out there who are suffering deeply, because of unexplained illnesses that may very well be caused by toxic mold poisoning.  I believe that there are people out there who are struggling with unexpected and unexplained infertility, and it is very possibly due to toxic mold that they simply cannot see.  I had three healthy babies in four years, and then lost three babies in a row in less than eleven months time.  I know that stillbirth and miscarriage happen to a lot of people, for a lot of different reasons, and that many of them go unexplained.  But there is an explanation for mine.  And after all that we have suffered, I do not want to leave others alone in their suffering, if our story might help them in any way.

I am not a doctor.  But I am under the care of one of the best environmental doctors in the world, and I trust her implicitly.  After seeing 14 doctors in 14 months, I can spy a bad doctor from a few thousand miles away.  And I am so incredibly grateful I have finally found a good one.  I can only share our experience, and our symptoms and treatment plan.  This is not a medical journal, and if you do have concerns that you may have been exposed to toxic mold, I would encourage you to see a good doctor, who specializes in this, though they are very hard to find.

Where do I begin?  I guess I’ll start with The Worms.

About eight months after Charlie died, I felt like my body was starting to shut down. I was getting worse with each passing day, and none of my doctors seemed to know or care what was wrong with me.  The worst kind of doctor…is the one who tells you you’re “fine.” And I had lots of those in my life.  I was exhausted all of the time.  I had a deep pain in my liver every day.  I had sinus infections, one of them so bad that it caused permanent damage to my hearing. My thyroid was failing, so badly that my basal body temperature was a whopping 96.7, and I was literally freezing in July.  I had horrible brain fog, and couldn’t remember simple things in spite of the fact that I’ve always had an amazing memory.  I had a raging ear infection, and it felt like the infection was actually starting to take over my entire body.  At one point I told my doctor, “I feel like my insides are actually crawling.”  I couldn’t lift my arms above my head without them going numb.  And most of all, I couldn’t get pregnant, and then I couldn’t stay pregnant.  In spite of what my doctors said…I knew I was so entirely not “fine.”

By that point I had been struggling with horrible eczema on my hands for about a year.  It is the first symptom I can remember having, and it started when I was seven months pregnant with Charlie.  My hands would explode in a horrible, bumpy, red rash, and they would become so inflammed that I would wake up in the night in excruciating pain.  They would bleed, and scab over, and heal…and then flame up all over again.  I went to the dermatologist twice, and she just told me, “This happens sometimes during pregnancy.” But it never, ever went away.

I was so entirely fed up with all of the subpar medical care I was getting, that I finally found a doctor in town who specialized in endocrinology.  He was my least favorite doctor of all fourteen.  And ironically, he is the one who probably saved our lives.  During my first consultation with him, he asked me if we had ever had our house tested for mold.  The only reason he thought to ask…was because a former patient of his had suffered a still birth because of mold poisoning.  He knew nothing about mold beyond that point, but I am so incredibly grateful that he mentioned mold that day.

He also mentioned about a hundred other things.  He suggested I go on a gluten-free, sugar-free diet for 12 weeks to help kill off the infection in my body.  He suggested I get all of my amalgam fillings removed from my teeth, to reduce the toxic load the mercury fillings might be having on my body.  He also suggested I take earthworms.  Yes…worms.   The worm supplement was supposed to help with blood circulation, because earth worms are experts at “breaking things down.”  I honestly have no idea if it made a bit of difference, but I took my worms religiously.

All of that to say, it was a difficult three months.  I got eight fillings removed at one time, and it was such an invasive dental procedure that I threw up three times in the dentist chair in one morning.  The dentist loved me.  I got myriads of blood tests done, and went through the entire holidays eating no sugar, and being completely gluten-free.  I was on a heavy detox program to remove toxins from my body and about 60 supplements a day, and yet my body was still failing.  It was a long and frustrating process of getting the house tested for mold and very difficult to get clear answers on what was going on in the home, and especially in my body.

And in the midst of it all, I got pregnant.  And then, less than four weeks later…another sweet baby came and went from our lives.  What was happening to my heart…completely overshadowed what was happening to my body.

But I was so incredibly sick of being sick, and I was not getting better. I remember looking in the cupboard at the 60 supplements I had to take that day, and thinking, “I am eating worms…actual worms.  How did I get to the point where I would actually say, ‘Nobody can help me…I guess I’ll just eat worms.'”

I got there…the same way everyone with unexplained, chronic pain gets there…I woke up one day, and I was suddenly no longer healthy.  One symptom creeped up, and then another, and no matter how many doctors I went to, no one could help me.  And before I knew it, I was sick, and in excruciating pain.

Even as I write this, I think to myself, “Who in the world, wants to hear about my boring list of symptoms?”  Because I don’t even want to write about it.  But there are millions of people in this world who live in chronic pain.  They spend all the money they have to spend, and even money they don’t, on doctors who simply do not help them get better. They feel trapped in a body that is betraying them on every level, every moment, of every day.  And I never really understood how paralyzing it is to live with daily, unexplained pain…until it happened to me.  So, if you’re still with me, and you’re still reading my boring symptoms list, please hear this…

If you are one of those people…I am so deeply, deeply sorry.  I am so sorry for the moments in your children’s lives that you have missed, because you were too sick to even get out of bed, let alone bake cookies for the school Christmas party.  I am so very sorry for those missed memories.  My year has been filled with missed memories.  I am so sorry that every moment of your life has been clouded by fear and uncertainty.  I am so sorry that your days have been wrecked by debilitating physical pain, and the gnawing soul pain of the “not knowing.”  And I know that for some of you, even knowing why you’re sick, doesn’t take it all away.  We finally know what is causing our sickness…and these have been some of the sickest days of my life.

And if you are not one of those people…please bear the burdens of those around you who cannot take a moment of heath for granted, because they are so few and far between.  I am so unspeakably grateful for the people in our lives, who took advantage of a time when they were healthy…and could have done anything with it…to love on us in our pain.

All of that to say…by the time I ended up in Dr. Hope’s office, I was so entirely weary.  But she listened to me.  She has more medical degrees on her wall than most of the doctors I’ve seen, but she didn’t treat me like I was less than her, just because I was the patient. She believed me.  And she helped me.  And why…well, because her office is filled with patient after patient who has been ignored and minimized by doctors who know absolutely nothing about toxic mold poisoning.  Her office is filled with people who have been sick for a very, very long time.

I remember hesitantly telling Dr. Hope about my “heavy arms symptom” at our first appointment.  And without a moment’s hesitation she said to me, “That…is one of the most common symptoms of mold poisoning.  Many of my patients complain of heavy arms, or even that their heads feel too heavy to lift up most days.”  The moment she said this, it was like the clouds parted and angels started singing.  There was a REASON for my pain.  I wasn’t just crazy, or delusional, or being dramatic.  Someone finally acted like it was not normal to not be able to hold my hands up to the steering wheel, or to carry my little Sophie.  Someone was familiar with this symptom.  Someone knew WHY. And someone was finally going to help me.

I cannot tell you the relief that came in the finally knowing.  I no longer had to just eat worms, and hope it was “helping.”  I was sick.  And someone believed me.  And someone could finally tell me why.

Many people have asked us how we are doing physically, and how they can be praying. Honestly, it has been a very rough couple of weeks.  The medicine we are on to remove the mold from our bodies makes us very, very sick, and I feel completely wrecked most days.

And it is an extra wound to carry that all five of us are sick at the exact same time.  The kids have been incredible.  They have done an amazing job taking their glutathione every morning, and their activated charcoal every night.  Every night Freddo says to me, “Mommy, why do we have to drink this stuff…it looks like rocks?”  And it does.  It actually looks like someone grabbed a bunch of ash from a fire pit and threw it into his cup.  But our sweet kids take their ash every single day.  It gives them tummy aches, and headaches, and it makes my heart ache just watching the mold continue to wreak havoc on their little body’s.  But there is only one way to get it out.  And they have been so incredibly brave.

In many ways, the kids are doing far better than I am.  Within a week after we moved out of the toxic house, the eczema that I had struggled with for over a year…completely went away.  But Dr. Hope had warned us that as we started to heal, our bodies would become more reactive to the mycotoxins, especially the mycotoxins on our old, exposed things.  I didn’t totally believe her, but the other day I was out in our garage going through insurance papers from our old house.  Within minutes of touching the paper from the old house…my hands became completely inflamed.  It was the worst outbreak of eczema I’ve ever had, and I woke up during the night multiple times last week, in so much pain that I couldn’t even go back to sleep.  It is so incredibly frustrating that my hands are once again inflamed.  My ear infection is back in full force. I have a headache, a sinus infection, and the worst brain fog and exhaustion of my life.  And those are just my symptoms.  We are still, very, very sick and would so appreciate your prayers.

So, that’s it.  A very long, boring symptoms story.  But all of that, brings me to the thing I really wanted to say.

I hate being sick.  I really, really hate watching the people I love most, being sick right alongside me.  And there is nothing I have hated more in this world…than having to bury three precious babies I had wanted to keep.

But I came across a quote the other day, and I can’t get it out of my mind.  It has stuck with me, and I’ve thought about it often, especially on the worst days.

I thought about it the other night at 3 am…when I sat on the bathroom floor, weeping, because my hands were so inflamed I couldn’t possibly sleep.  I thought about it as we went through our garage…and threw out even more stuff from our old house that I had hoped we would somehow get to keep.  And I thought about it as another month went by where I am so incredibly sick that the idea of trying to trust God for another baby…has to be the absolute last thing on my mind.

6beb627e399245b414481fef719a1212

The first time I read it, it made me mad.  It seemed way too trite and pat.  The word “kiss” was especially hard to take.  I don’t want to kiss the things that have made me ache so badly.  I don’t want to kiss suffering…I want to beat it up.  And mostly, I want to run as far away from sorrow as my legs can carry me.  My heart is bleeding as bad as my hands, and it’s hard to think of welcoming suffering, let alone “kissing” it.

But the more I’ve thought about it, the more Spurgeon’s words resonate with me.

I get waves.  Waves have been a familiar theme for our family over this last year of pain. Life’s sorrows totally do “like sea billows roll.”  And they more than roll.  They slam into you relentlessly, and you wonder time and time again, if you are actually just going to drown at some point under all of this pain.  Emma asks me multiple times a week, “Mommy, why does our life have to be so hard?”  Her question hurts every time.  We have felt slammed over and over again…by the sorrows that ravage our lives.

But I really think there is an eternal truth to these words…and it has breathed fresh life into my gasping soul this week.

Every single wave…has slammed us into somebody.

And not just somebody, the Somebody who we asked, long ago…to take our lives.  To save our lives.  To sustain our lives.  To use our lives.  To redeem our lives.  And most of all….to be with our lives.

I did not feel close to God as I wept over my inflammed hands the other night.  But He was with me.  I know He was with me, because the only thing on my deliriously exhausted mind at 3 am that morning were these words, “Thank you God, for Job.”  I kept saying it, over and over again.  A little delusional, and mantra-like.

But I felt such genuine gratitude in that moment…that God did not leave me in that moment alone.  That God did not leave me in that moment, without someone who had gone before me through it.  Job’s boils hurt so much that it says he, “found a piece of pottery to scrape himself with as he sat in ashes.”

We literally sit in ashes right now.  We take 12 activated charcoal tablets a day, to help bind up the mold as the toxins are released…and it’s literally just ground up ash.  It means the world to me that Job sat in ashes.  Because right now ash is ever on my mind.

It means the world to me that Job scraped his bleeding sores in the night, just like I scrape mine.  That Job knows exactly what it felt like to have to bury the children he loved more than anything.  That Job knows what it feels like to live with prolonged, varied, and excruciating suffering.

Because in the end…after all that he had suffered…

Job still kissed the waves.

Job still believed that God was good, and that God was love, in the midst of every unlovely thing that came his way.

Job believed that being slammed against the Rock of Ages was still, in the end, everything that matters…when everything else that matters is taken away.

“As for me, I know that my Redeemer lives, And at the last He will take His stand on the earth.
Even after my skin is destroyed, Yet from my flesh I shall see God;
Whom I myself shall behold, And whom my eyes will see and not another. My heart faints within me!”

It has been a very difficult couple of weeks.  My body especially, is not responding well to the mold medicine and I have been very, very sick.  It felt like a real slap in the face that suddenly, after they had finally gone away, the boils are back in my life.  I wasn’t thinking particularly holy and glorious thoughts in the bathroom at 3 am that morning.

But I did feel a deep, holy gratitude for every detail of Job’s life.  Gratitude that God included Job’s story in the 66 books we have to cling to as we stumble through this life. Gratitude that Job walked with God to the very end of his suffering.

And most of all, gratitude that the God who sustained Job’s life, and far more importantly…his faith…is the same God who sustains both yours and mine.

I’d really like to put a bow on this post.  To say, “This is what we had…and now we are all better.”  But we’re not.  The waves crash on and on and on.

And that’s…why Job’s words give life.  Because someday, the waves will cease.

Someday…Jesus will come in power, and take His stand on the earth.

Someday…He will stand over every storm of this life,  and He will say once and for all, “Peace be, still.”  And the peace will stay.

Someday…even after my body is destroyed, I will see the Rock of Ages, with my very own eyes.

Someday…He will introduce me to my babies.

And someday, there will finally, finally, be an end to all of this pain.

And so, we wait.

 

 

 

 

 


8 Comments

Oh, the Places We Will Go

Lately, I’ve been working on a project for our new bedroom.  A picture wall, of artsy black and white photos, of all of our favorite places we’ve been together as a couple.  We’re probably the only ones who will ever see it, and it’s really just for us.  To remind us of the sweetness…in the midst of so much bitter.

But today, as I stood there looking at pictures of the gorgeous waters of Phuket where we snorkeled together, the bridge in Luxembourg where we watched the sunset and saw Mumford & Sons in concert, the little village in Provence where we got stranded in a summer downpour on our honeymoon…I was struck by something.

When we said “I do”…we had no idea that our story would be written in any of those places.

We’ve had so much fun exploring the world, and have truly been to some of the most spectacular places on earth together.  But I had one thought alone as I looked over the pictures of the best adventures this world has to offer…

Not one of those pictures, of all of those beautiful places, captures the truly defining moments.  Besides getting lost in Italy, and having to hitch-hike together through lizard-infested hills (which really was a defining moment of trust on my part)…those beautiful pictures, simply do not capture the most significant moments.

Those moments…were the hospital room where our sweet baby Charlie was born.  The graveyard…where we buried every hope we had for his life.  The fresh earth…that was tilled every time a new life was lost.  The house we moved into…not knowing that the roof above us would have a profound impact on our lives.  And this new address…where we struggle through each new day of in sickness and in health together.

Those are the moments that have most defined and strengthened our marriage. Those were the moments that have most taught us to cling to God and to one another.  Those were the moments where we stood, surrounded by far more sorrow than beauty.  And I stood in every one of those places of profound pain, and felt grateful for one thing alone…that he was standing there too.  For just as we had no idea on our wedding day that we would hike the Great Wall in winter, or eat the best doughnuts of our life in Malaysia…we also had absolutely no idea that we were about to journey together to places of such deep suffering and sorrow.

And that’s…what marriage is.

It’s saying, “I have absolutely no idea where I am about to go…but I want to go there with you.”  To places indescribably beautiful, and inexpressibly painful.

Marriage isn’t saying, “I will protect you from the pain.”  Because it can’t.  

Marriage isn’t saying, “We will only go to the fun places together.”  Because a good marriage won’t.  

And most of all…marriage isn’t saying, “I will love you so well in the hardest and most painful moments”…because sometimes, you just don’t.

Marriage is saying one thing and one thing alone…

I will be there.

When you rent a moped and adventure through Rome at sunset…I want to be on the backseat of that moped with you.

When you give birth to your first-born child, and hold her in your arms as the tears pour down…I want to be there with you.

And when you walk through the deepest heartache of your life…when your entire world crumbles…when some days you don’t even want to breathe air on this dark earth anymore…I want to be there too.  I may not have the right words.  I may even have the exact wrong ones.  But I will not leave you.

And that’s why marriage is such a gift.  Because who in the world would choose, let alone stick with, any one of us…if they actually knew exactly what they were getting into?

Marriage isn’t saying, “I’ve found the golden ticket!”  Because, let’s be honest…you haven’t.

Marriage is actually saying, “You’re probably a mess.  I’m surely a mess.  This is probably going to be a big fat mess.  And on top of it…we’re going to suffer.  With one another.  Because of one another.  In spite of our deep love for one another.  We, are going to suffer.”

But let’s suffer together.  I want to suffer with you.

It’s my favorite part of I Corinithians 13.  Verse four… Love suffers long.

I am so deeply thankful for my husband.  So thankful for the ways his love has long suffered mine.  So deeply thankful that I have not had to suffer alone.  So thankful that, in spite of the tears he adds to my life, and the ones I add to his, I am not alone on this long road Home.  I have someone by my side, for the indescribably beautiful and the inexpressibly painful.  He is there.

Sometimes…we’re not even speaking because we couldn’t possibly maintain an intelligible conversation over the screaming children in the car…but he is there. Sometimes…we’re not speaking because we’re so incredibly mad at one another…but he is there.  Sometimes we’re not even speaking because there is so very much pain and sorrow that there are simply no words for a heart that aches that much.  But he is there.

Several years before I was married one of my spiritual mentors said to me, “There comes a day in every marriage when you will look at your husband and think to yourself, “Oh.  No.  What have I done?!”   And when that fateful moment comes… Don’t worry.  Because that moment is normal.  Everyone thinks that at some point…at many points…in the journey of a life spent as “one” with another.”

Those…were wise words.  Wise, because they’re true.  Wise, because I’ve experienced them myself.  Wise, because all of my honest friends have too.  And most of all…she was wise to speak them, and I’m speaking them now…because Satan would love nothing better than for every married person…to think they were the only one hearing them.  To think they were words to react to.  Words that somehow meant more, than the words uttered when you stood before God and everyone- and said “I do.”

I have never felt so close to Reid…as I have in this last year of our lives.  And also, at times, never felt so far apart.  Our marriage has been through more fires than I can even keep track of.  Fires of fear.  Fires of loss.  Fires of uncertainty.  And fires of sorrow that I never, ever expected were coming on the day we said, “I do.”  We stood up there in that beautiful old cathedral, full of Dr. Seuss-like dreams of “Oh the places we will go”…never dreaming it would be so adventurous.  So beautiful.  So stressful.  And so utterly painful.

Our only dream…was that we would go there together.  And by the grace of God, we have. And that is a gift immeasurable.

Because we work with college students, our kids end up being surrounded by weddings and marriage.  They often talk about who they’re going to marry, and even worry about it sometimes, which I find totally adorable.  I distinctly remember the time when sweet Fred, at the tender age of three, sighed a deep sigh from the backseat of the car.  “Freddo,” I said, “What’s on your mind little bud?”  Another deep sigh.  “Oh,  Mommy.  WHO am I going to marry?  No one wants to marry me.  All the girls are just so busy right now?”

The weight of the world.  On such handsome, eligible, little shoulders.

I don’t know what God has planned for Emma, Fred, and Sophie’s lives.  I don’t know if any one of them will ever get to say, “I do.”  I don’t know when.  And, as much as I’d like to arrange their marriages, I don’t know to who.  After all of the loss we have endured, I hold my dreams for my children’s lives far more loosely than most people.  But if God has chosen the gift of marriage for our children, my prayer for them is a simple…

“God…please help them to treasure the person you have given to them to get through this life with.  Please give them hearts that are faithful to love, and to love, and to love some more…no matter where the journey takes them.  And please give them the grace to say, and to live out,  “Wherever you go…I will go there with you.”  

Thank you Reid Zeller- for being with me in every single one of the places we have been together.  For the places that made the artsy picture wall.  And the infinitely more precious places…that didn’t.


11 Comments

Chairs and Butter Knives

Today… is “Thank You” day.  Well, at least, it’s supposed to be.

A few weeks ago, I had purposed in my heart that I would actually write a hand-written “thank you” to each one of the 899 people who have given us a gift on the Youcaring website.  I bought ten black pens and hundreds of “thank you” cards, and strategically planned out exactly how I would thank those 899 people, and the hundreds of others who have loved us in so many ways over the last few weeks.

But honestly, I’m losing steam.  I’m on #27…and my thyroid is throbbing.  I have to ice my lymph nodes just to get through the day.  My ear infection is back with a vengeance.  And the kids are not doing well with the mold medicine today.  My dream of 899 handwritten “thank you’s” is rapidly dwindling.

But I had really, really wanted to.  Mostly because I just feel so, truly thankful.  It’s one thing to have good reason to thank people.  But I have more than just good reason…we are deeply, deeply grateful for the outpouring of love that God has lavished on our family over the last few weeks.

And I realized the other day just exactly why.

Reid’s little sister came for a visit this weekend, and she asked me an interesting question. She said to me, “Honestly, I’ve led a pretty charmed life.  Why do you feel like I’ve loved you so well through this last year of suffering?”

And she really has.  She has led pretty charmed life.  And she has loved us incredibly well throughout this last year of life.

And as I thought through her question it hit me suddenly.  It’s isn’t because she’s “been there.”  She hasn’t.  She doesn’t have children.  She hasn’t buried a child.  She hasn’t had a miscarriage.  She hasn’t lost basically everything.  She hasn’t had to deal with debilitating, mysterious, and daily physical pain.

And yet, she’s loved us like she has.

And then it hit me.  “Jules,”  I said, “You have loved us so well…becuase you act like it HAPPENED TO YOU.”

And that’s it.

And that’s everything.

There were days after Charlie died when Julie would text us just to share that she was having a really hard day because of the deep sorrow she felt over the loss of Charlie’s life. There were when days she felt really angry.  There were days when she missed being his auntie so much she ached.  There were days when she drove all the way up…just to help us with our kids, and our move, and our deeply broken lives.

It didn’t happen to her.  But she acted like it did…and that was everything.  

A few months ago my friend sent me an incredible book called “Out of the Storm.”  It’s on the life of Job, and it ministered deeply to my heart as we limped on in the never ending storm of our lives.

One part in particular stood out to me…

“Let’s be honest,’ Job says. ‘Let’s have no more of this pious make-believe that it goes well for good people and badly for bad people. You look around the world and it’s simply not true.  By and large people who could not care about God live happier, longer lives with less suffering than do believers. Why? What kind of God might it be who runs a world like this?’ We face hard questions like this in the book of Job.

But there are two ways to ask these questions. We may ask them as ‘armchair questions’ or we may ask them as ‘wheelchair questions’. We ask them as ‘armchair questions’ if we ourselves are remote from suffering.  We grapple with God with ‘wheelchair questions’ when we do not hold this terror cheap, when we ourselves or those we love are suffering.  Job asks the ‘wheelchair questions’.”

Few authors have truly put into words the battle we feel daily.  But this is it.  We went to bed on January 27th…healthy, and happy, and deeply close to God and grateful for our lives. And the very next morning, we woke up in a wheelchair.  Broken beyond our wildest dreams.  Emotionally wrecked beyond our wildest dreams.  Spiritually threatened beyond our wildest dreams.  We woke up in a nightmare.  And it happened literally overnight.  And it felt, and still feels, like we live our lives from a wheelchair of pain and suffering through each long day.

And all around me…are people in chairs far different than mine.  Some live in armchairs, completely remote from our depths of suffering.  They talk about suffering, and think intellectually about suffering, and comment on suffering…and though they haven’t suffered much, it’s at least on their radar.  They at least try.

And then…there’s the beach chair peeps.  Those people in our lives who live so totally removed from the realm of suffering that they simply cannot hang.  Their lives are charmed beyond belief, in ways that are actually debilitating.  And they can’t even grasp that you are in a wheelchair…let alone sit by your side.

But regardless what chair people happen to be sitting in, at this moment of their own stories, I want to make one thing very, very clear…

Love…isn’t about chairs.

Love…defies chairs.

Love…gets out of whatever chair you happen to find yourself in…and love acts like you also woke up one morning and found your life wrecked beyond belief.

And that’s why I feel so deeply grateful to the 899 plus people who have reached out to our hurting family over the last year, and especially over the last few weeks.

Every time you sent us a note of encouragement.  Every time you gave us a gift.  Every time you sent us something beautiful, and lovingly handmade.  Every time you told us that you pray for us daily.  Every single time it’s like you were saying, “I see you in that wheelchair…and I will not leave you alone and in that much pain.”

You act like it happened to you.  And it has meant everything.

The friend of a friend whom I’ve only met once…who poured hours of love and time into an Instagram auction that raised $8,000 dollars for our family.

The twelve-year-old…who sent us his very own birthday money.

The couple in Botswana…who gave us $10 through the Youcaring website.

I know for a fact that that ten dollars would have gone a lot further in Botswana, but it meant the world to me that they would make such a sacrifice.  It meant so much, because through their gift they were saying to us from oceans away, “I see you in that wheelchair, and I will not leave you alone in this much pain.”

That’s what love looks like.  To do something…that means everything.  To chose what is difficult, and unsafe, and inconvenient, and even scary.  To leave your own chair…and move towards someone else’s pain.

On the night of the Instagram auction Reid and I went out on a date.  While we were out I happened to check the auction bidding and was astonished to see that someone had placed a $500 bid on a butter knife.  It was a little silver knife that said, “Spread the Love,” and it was certainly cute as far as butter knives go.  But $500…that’s just crazy.

Everything was being auctioned off for far more than it was worth, and people were even bidding on things just so they could win them and send them to me.  At one point in the bidding, I texted my friend.  Her words will forever be imprinted in my mind as the ultimate statement about the last month of our lives…

1947397_10151939060250863_2038144015_n

There it is.  A simple, and eternal truth.  Forever recorded in a text message.

To love like we have been loved lately, well, that’s just plain Jesus.  It is people being like Jesus.  And it is Jesus Himself…loving us through His earthly Body.

I may or may not get to all 899 of the “Thank You” notes stacked up beside me.  Honestly, it’s not looking too good at this point.  But please know, from the depths of our being, how very grateful we are for the love you have shown our family.  Grateful for your prayers. Grateful for your giving.  And most of all, grateful that so very many of you, left chairs that may be quite different than ours…to sit a little closer to ours.

We have been deeply loved on by the Body of Christ…not necessarily by those members who have buried a baby, or who have had a miscarriage, or who have lost all of their earthly things…but by the people who have acted like it happened to them.

Such love has meant the world to our family…because Jesus did the very same.

I keep thinking of those words from the Bethel worship song that says, “What other King leaves His throne?” 

It’s true.  Who does that?

Jesus, who ruled and reigned for all eternity in the most majestic and glorious Chair…left that throne for you and me.  He acted like sin, and death, and eternal seperation happened to Him…and loved us like it.  By coming for you and me.

He touched with holy hands…dirty, bleeding bodies wracked with disease.

He sat right down in the dirt…next to hurting people in wheelchairs of every imaginable kind.

He came down…and bought $500 butter knives.

This is our Jesus.  The one who left the best chair, for the worst.  To love on you and me.

The last year has been a nightmare that I know we will never, ever fully recover from.  Our bodies will probably never be the same after years of exposure to such a devastating toxic load.  And our hearts will never be the same from the loss of such precious lives.  I had to drive by the cemetery today where the body of my sweet baby is buried.  I am not ok.  And I never will be.  We have lost beyond our wildest and worst nightmares for our lives.

But you have also given us something new to reconcile with…being loved by God beyond our wildest dreams.

Thank you for being like Christ.  For sitting so close to us in our chairs.  And for loving us in His name.

With love,

Misty


7 Comments

Trust Without Borders

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

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

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

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

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

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

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

There is only One who did.

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

Until yesterday.

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

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

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

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

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

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

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

With tears and trust.  

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

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

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

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

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

But it’s there.

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

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

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

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

Borders I never wanted to cross.

And yet…God remains.

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

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

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

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

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

And of both, He is absolutely worthy.


16 Comments

This Ones For The Moms

I’ve been a little mia lately, because I was at a conference this last week.  On one hand, it was good for my heart to spend time with other mom’s in my same season of life.  There were also moments of deep pain.  I’ve pretty much resigned myself to the fact that it’s just always going to be really painful to sit in a room full of pregnant ladies and newborn babies.  It’s hard to watch those sweet bundles resting on their mommies…and to feel the ache in my arms of babies missing.

It’s hard to hear another mom introduce her baby, and to think, “I don’t even know their names.”  I know Charlie’s name, and I cannot even breathe most days…so great is that ache.  But it’s a totally different ache, not even knowing the last two babies names.

And so…sitting in a room with other moms who know their babies names, and moms who are pregnant with new ones, and moms who are not dealing with a toxic neurological poison that is devastating their children’s tiny bodies…I do feel like I’m standing on the other side of the fence in many ways.

But there is something else going on in my heart right now, that makes me feel a deep bond with every one of the world’s mommies, and it’s the thing that keeps me awake at night.

And I’m willing to bet…it’s also keeping you awake.

Yesterday was a hard day.  I woke up as usual, took my morning dose of mold medicine, started getting ready for church, and then…Bam!…everything went black.  One minute I was daydreaming about escaping to Ireland for St. Patricks day (thank you Pinterest for that unnecessary distraction), and the next minute I was shaking violently and hearing Reid yelling at me from a far away place.  I heard, “Babe! Babe!  Are you OK?”  And then I was back.  I’m not even sure what to call it.  I just know that I was shaking, I was not aware of what was happening, and that even in that terrifying moment, escaping to Ireland was oddly on the forefront of my mind.  Most of all…I know that I was scared.

I was scared.  Reid was scared.  And I’m still feeling scared today.

My symptoms list is getting too long to even name at this point, and the neurological symptoms are definitely starting to scare me in places I can’t even articulate.  But what has struck me the most is that no matter what each new day holds for me…the one question ever on my mind is, “Are they going to be ok?”

know I’m not ok.  I’m so not ok that it took me so long to find my parked car at Costco the other day, that a Costco employee actually came out of the store, and said to me, “I’m going to help you find you car, Sweetie, because you’ve been out here for a very long time.”  Besides the embarrassment of being that girl who now needs parking lot assistance, I really don’t care that I can’t find my car.  Life has been so hard for so long that I’ve become quite ok with being not ok.

But not knowing if my kids are ok…well, that terrifies me.

We have always teased Emma for being slow.  We fondly call her “turtle” and can count on her to be the last one out the door every time we go someplace.  But watching her struggle through her neurological tests at the doctor the other day…I couldn’t even breathe. Couldn’t.  Even.  Breathe.

I kept thinking, “What if she isn’t naturally a turtle? What if she isn’t just someone who likes to stop and smell the roses through every moment of life? What if she DOES have neurological damage from toxic mold poisoning? What if she isn’t ok?”

This may seem like a simple thing, but the tears are pouring as I write.  Because this is the thing.  This is the thing that cuts to my heart more than any other thing.  Because Charlie isn’t with me.  And neither is the next baby.  Or the next.  I couldn’t protect them. Even though I would have walked through fire to have protected them if I could.  I look at the three little ones God has entrusted to my care for today…and I want to protect them. Desperately.

And I realized as I was talking with other moms at the conference this week…that they feel the same way.  That you feel the same way.  

And since this is the thing…that cuts to our hearts as mommies more than any other thing…I’m just going to put it out there.  I’m going to share with you the secret I have learned through this endless year of pain.  The ultimate secret to protecting your kids from this world’s deep suffering…

You can’t.

At all.

You.  Just.  Can’t.

You can’t actually, really, protect them from anything.  And what hurts so bad is that we kind of think we can.  We pack their lunches in the morning, and pray against that little bully on the playground they may have to face.  We stick the Barbie band-aide on their scraped up knees and think, “I’m going to make sure I stop you the next time you run full speed ahead into that tree outside by the driveway.”  We wipe the tears from their chubby little cheeks and we vow, “I’m never going to let someone say that to you ever again.”

I know you think these things…because I I’ve thought the same things.  Yesterday.  This morning.  And tomorrow too, probably.

But I am here to tell you, if I have learned one thing from holding three tiny babies in my arms that I didn’t get to keep…you are far less powerful than you think.

You can buckle their seat belts.  And fold their laundry.  And make their PB & J’s.  But you are not writing their story.

You are only reading it.

Line by line.  Page by page.

And you have no idea, and even less control…over the story that a Sovereign God has written for your children’s lives.

I’m so sorry to say this.  And no one hates this more than me.  But those are the breaks.

I vividly remember the day we buried baby Charlie.  I stood by his tiny grave and thought to myself, “Why couldn’t it be me?  Why couldn’t he have lived, and You have taken my life in his place?”

But I didn’t get to make that choice.  And I absolutely know I would have.  I know that it wasn’t for lack of love that Charlie died.  Ask any mom, on any pediatric cancer ward, in any hospital, in any country…it is not for lack of love that they watch their babies suffering.

They didn’t get to make that choice.  And neither do we.

Because we are just dust.  Our kids may think that mommy is big and strong and powerful, but we know.   And we are haunted by the knowing.  We know deep inside that there are so many things we are not sovereign over.  Like for instance…everything.

The friends they will make.  The car passing by on the street.  The sincerity of their teenage faith.  The cancer cells in their body.  The neighborhood bully.  The number of their days.

The list is endless and deeply, deeply depressing.

Because we love them desperately.

And I sit in the weight of this list every day.  With three babies sick and three babies buried…I feel deeply the weight of all that I cannot protect my kids from…I, who am a fanatic about seat belt-buckling, gummy vitamin-taking, and tricky people-watching.  I feel the weight of all that I am not Sovereign over…and it is so very soul crushing.

And that’s when God comes on the scene.   Or rather, that’s when I remember that the whole thing is actually His story in the first place.

I want it to be my story.  I would have written a far different one.  I am deeply committed to a pain free life, and my story would have been filled with happy.  But then, it would have been mine.

And it simply isn’t mine.  I didn’t even choose to live.  He chose me.  And He made me.  And this is His story.  And He has gone out of His way to remind us of that difficult but precious truth, time after time, line after line, page after page.

A few weeks before Charlie died, Reid had decided to get a tattoo with four stars on his arm.  One for each of our babies.  We knew we were going to be “done” at four, and since tattoos are such a permanent thing, it seemed like the perfect time.

And then…our little Charlie star died.  And with heavy hearts, four stars were etched permanently on the arm of the one I love most.  And that tattooed arm hugged and held me as we grieved and cried out the to God of Abraham, day after sorrow-filled day.

And then…another little star fell from the sky on a brilliant June morning.

And a little more of me died.

And then…when we didn’t think we could possibly endure any more pain…another star fell the week before Thanksgiving.  I remember thinking in that moment, “HOW long O Lord!  HOW MANY stars are going to end up on that arm before we are done with all this suffering?”   I envisioned my husband, who loves our kids more than anything, with an arm full of rows and rows of stars, and I just wanted to weep.

In the midst of this fresh loss, we had to attend yet another conference full of babies and pregnant ladies.  I was struggling a lot at the conference with why God has written our story to be so full of pain and suffering, while so many around us have been given a far less painful story.

One day when I just couldn’t take it anymore, I went back to our hotel room and cried out, “God, please speak to me.  Please say something?”   And then I got this wonderful idea to start reading the Psalms…backwards.  I was feeling really hopeless and weary and uncommunicated with as I waded through 150,149, 148.  I was just about to close it up for the day, and then my eyes fell on Psalm 147:3…

“He heals the brokenhearted
    and binds up their wounds.”

Ok, fine.  Speak Lord, your servant is listening.

And then I looked down at the very next words burned on the page,

“He determines the number of the stars;
    he gives to all of them their names.”

I’m sure it’s always been there.  Buried in Psalm 147, and missed by most well-intentioned Psalms readings, since most normal people start at the beginning.  But there it was. Hidden there just for me.

He numbers the stars.

He knows their names.

I read it.  And then reread it.  And then read it to Reid.

And I’m still reading it.  Every.  Day.

Every time I feel tempted to fear that Emma will always struggle in school because of toxic mold poisoning…I cling to the promise that He alone is Sovereign.  That He alone made her and sees her and knows her.  That He alone is the one who numbers and names.

I had thought I was naming her Emma…but God was naming her through me.  Emma, slow moving, sweet-hearted, stop-and-smell-the-roses, Emma Leigh.  

I had thought I was naming them Freidrich Uriah and Sophie Noel...but God was naming them through me.

I had thought we had named him Charlie.  Charlie, whose name means “Free man, Strong”…which we didn’t even know until after he died.  Definitely named by God…is our little Charlie James.

And for the babies whose names I won’t even know until I someday meet them face to face…I rest in the Sovereign God of Abraham who has always been deeply committed to a sky full of stars and kids full of grace, and most of all…His glory and His story.

I am absolutely convinced that He has written our lives.  Convinced that He numbers and names both your stars and mine.  And convinced that while we have been called to be good stewards of such a precious gift as living stars…we are but characters in a great eternal story.

Reading, and not writing.  And shining brightly for the glory of the Author of stars and lives.

I used to wonder all the time, “If we ever had a fire, what would be the one thing I would take?”  And now that we’ve basically lost all of our things…it has become very clear to me what I’d take from our new little house by the beach.

I’d take this shelf.  The most important reminder God has ever given to me, that as a mommy I may feel wildly out of control…and I am actually.

But I belong to a God who has numbered the stars, and knows their names.

1970386_10151908347530863_763696144_n