charlie's song

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…


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,



11 thoughts on “Chairs and Butter Knives

  1. Dear Misty,

    Thank you so much for continuing to share your story online. I keep coming back daily to see how you all are doing and to find new things to pray for. I sent you a Facebook message a while back, but it might have gone to your others folder. You have a new friend praying for you and loving you from afar!


  2. Misty, I read your blog and I sob all the way through. I wish so much I could do something MORE for you and your family, something to ease the ache and to heal your bodies and to bring back your beloved baby Charlie. But I can’t and so I do what I know to do. Pray for you and your family and sob when I read your blogs because they touch my heart so deeply. I share your story ALL the time. I can’t remember ever feeling somebody else’s pain as deeply as you allow us to share in yours. Every one of us is holding you up and walking this journey alongside of you – even when you can’t see us or feel us or hear us. We are HERE for you and your family, Misty. Thank you for the humbling privilege of walking alongside you in this valley of the shadow of death journey you are on.

  3. I think of you and pray for you daily. And little Emma is always on my heart.

  4. Thank you for continuing to write this blog! And 27 thank you notes – you made it much, much father than I ever would have. Seriously, the most I’ve written in a day is 19 and I was losing it. And I’m single, without children, and not having to ice my lymph nodes.

    Still praying for you and your family.

  5. I think of your family often and I read through your blog-the new ones and the old ones (sometimes multiple times) and I feel your heart and your hurt. I hurt for you and I cry salty tears at every post. I followed the instagram auction also and I was utterly shocked at the bids. I was out the running fairly quickly but what if I had followed the Spirit to lead me to where my trust is without borders? What if I did more than just lend my sensitive and caring heart to anothers’ story? You are leading me even further into the nitty gritty part of Christianity that in 31 fairly charmed years I have never had to rely on nor look into deeply. I am a Christian. I believe that Jesus died for my sins and everyone else’s. I am raising up my children in the same belief and we attend church nearly every Sunday. I have never got beyond the elementary bible stories to really know my Jesus and trust in Him to lead me. I am now grappling with the hard questions and few answers from up above after being put in my own “wheelchair” in regards to my Mom’s recent ALS diagnosis. This is my deepest, muckiest, yuckiest, experience. My chair looks so much differently than yours but my heart looks much the same and it thinks of you and your children when I look at my own. I am a terrible person at prayer but I think God knows when I read or think about you that it is my prayer to Him on your behalf. Thank you for letting your light shine, however dim it may feel or is, it really shines through every word you type.

  6. Dear sweet sister in Christ,
    Jesus does not expect a thank you note. Your loving memoir is so much more than a thank you note. Good manners are always in style, but you can consider your notes written and delivered.
    I pray that you continue searching and finding the nuggets of love and revelations God has left for you. God loves you and so do we!

  7. Continuing to pray for you & so encouraged by your heart. I wish it was another story because the loss you have suffered is just so unfathomable- but I know that in this story of grief that God is doing things more glorious than we could ever imagine. Keep standing on the firm ground of Christ- our cornerstone. You are loved dear Misty as is your sweet family!

  8. You are amazing!

    • Constantly thinking about you and your family. I don’t know the devastating pain you are experiencing but my thoughts and prayers are with you. I can’t imagine how you do it…you have my deepest respect and sympathy.

  9. I continue to pray and love all of you from my little chair to your big chair, both of which sit at the feet of our Lord. He is helping both of us with our chairs, different, but still chairs.
    Love all of you and hope to see you soon.

  10. Pingback: Weekend Reading

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