Super Heroes And Scars

This last week, I had an opportunity to teach in Chase’s class. As we talked about narratives, he sat quietly, drawing his heart onto a blank sheet of paper. The story would shape into a super hero boy whose mom would not let him save the world until he cleaned his room.

“Are you saying that the world would be a safer place if you never had to clean your room again?” I asked him with a smile.

Eyebrows lifted, mischievous face in full bloom, he grinned. “Of course. It’s bad for the world when I clean.”

But then he pulled me aside and his voice was a gritty whisper of sadness as he asked me. “Do they know I have hearing loss?” This is something Chase does often. Despite it being a reality for the better part of his decade, Chase fights his hearing loss and is still tempted to treat it like a dirty secret, even when obviously wearing an aid in school. I’ve watched him feel shame about it, and frustration too. In fact, it’s one of his big three – “The H’s” – height, hair, and … hearing loss.

We remind him how brave he is. 

We remind him how hard he’s had to fight for those scars of loss and how proud we are of him.

We remind him that they are a precious part of him, but need not define all of him.

And yet, he struggles. 

Until last week.

Last week, I got to see an incredible change in Chase regarding his hearing loss. For the first time in as long as I can remember, I saw pride. 

This joy-filled confidence came about because he, as a fourth grader, got to walk into a second grade room and be physical encouragement to a new second grader who had just started wearing a hearing device and was doing a presentation on it for her class.

How brave is the precious eight year old girl who stands for such things?

And how brave is the precious ten year old boy who stands with her and says ‘You’ll be okay because I’ve done it and I’m okay too”?

After all this time, and all the affirming words and normalizing exercises, I finally saw Chase most proud when he was able to use his disadvantage to someone else’s advantage. He became most heart-full when the very scars that bother him became someone else’s encouragement.

And I hope you hear the truth underlaying this story and that you can hold it close to your own heart even today. 

Your struggles are not in vain.

Your pain is not without purpose.

Your weakness may very well be your greatest strength. 

Because, Dear Ones, when it comes to the story God has for you, the pieces that fall into place are never in error, even if we don’t see how they work together. You are in the middle of your story for a reason – “for such a time as this”

Moment by moment.

“God comes alongside us when we go through hard times, and before you know it, he brings us alongside someone else who is going through hard times so that we can be there for that person just as God was there for us.”

2 Corinthians 1:4 (Message)

For privacy purposes, I will not share the school where this was taken, the hearing teacher who took it, or the two other children in the original frame, both with hearing pieces wrapping their ears or devices around their necks. But I can tell you that the joy on their faces is beautiful, and I can share Chase’s smile with you as he stood alongside them.

Stuff, Things, And Chase Stole My Book

…or, as I like to call it: “Our joint office”.

Yes! It’s the first day of May, the kick-off to Brain Tumor Awareness Month, and that warrants a rather questionable video of me telling you whatever is on my mind.

First of all, THANK YOU so much for all the texts and messages in response to my little update yesterday. I so appreciate all your encouragement and prayers – feeling so loved. Please continue to pray that the Lord would guide and direct me in every step. I know the desire in my heart, but I also long for my heart to mirror God’s will, even if that means changing things up.

Next… Brain Tumor Awareness! Dear ones! Chase Away Cancer (the book link to Amazon) turns TWO today! And in honor of that, I explain why you need to go buy one, share it with a friend, give it as a gift, and basically all other manner of shameless promotion. Guys, I believe in the message of this book with every fiber of my being. Pass it on.

And last, you’ll have to watch the video because … wait for it … Chase is a book-stealing book stealer. Ah…

 

Moment by moment…

Ellie

PS: Y’all can @ me anytime on Facebook (Ellie Poole Ewoldt, Instagram (Ellie Poole Ewoldt), or Twitter (eleanorewoldt) – I love to hear from you!

PPS: If you think of us tomorrow (Wednesday 5/2), please remember to pray for Chase while he meets with his endocrine team at Lurie. Our hope is that the growth hormone shots are working and that Chase’s system is as strong as it can be.

A Study In Weakness

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These last few awareness days have been filled with living rather than writing as we enjoyed the weekend…started a busy week, and I prepared for a speaking engagement because some time ago, I committed to speak to a group of women about Chase, cancer, and hope.

In all honesty, by a few weeks ago, I was strongly considering a cowardly call to the women’s ministry director with the words “I can’t. I simply can’t.” For when life comes at me like a whirlwind or a physical assault, the last thing I want to do is talk – let alone to a group of people. When the stress sits on my shoulders like a weight and the heartache of disappointment or loss squeezes tight, sometimes I can’t talk and even when I can, I gut-honestly don’t want to talk about the goodness of God when I’m not feeling it – not because I don’t believe it to be true and poignantly real, but because I’m just so weary. The litany in my tired brain is this: No more. Please, no more… I don’t have the energy to be strong right now.

But here’s the thing… when I am weak, HE is strong. Pretending to be anything other than the weak, hot mess I am does a great disservice to the God who made me, calls me by name, and has promised to complete the good work he started in me.

So, in faith, in the dust of my broken pieces, I took those ladies these words:

The further into this life journey I go, the more convinced I am that authenticity in our brokenness is a key component of gospel growth and gospel encouragement. For truly, we are painfully needy and will remain so until the day we see Him face to face.

That’s it. Be real in the pain. God I’m needy, but you aren’t. You know what I need better than I do myself. Help me to accept this truth and feel peace in it when this discouragement threatens to overwhelm. 

And then wait… wait for Him with great hope because you never know how moving forward in obedience and faith will encourage your heart to keep going for just one more day.

Moment by moment.

Three different times I begged the Lord to take it away. Each time he said, “My grace is all you need. My power works best in weakness.” So now I am glad to boast about my weaknesses, so that the power of Christ can work through me. That’s why I take pleasure in my weaknesses, and in the insults, hardships, persecutions, and troubles that I suffer for Christ. For when I am weak, then I am strong. 2 Corinthians 12:8-10

With Harvest Bible Chapel Dekalb's Women's Ministry director, a dear sister of my heart, Jennifer Yonke
With Harvest Bible Chapel Dekalb’s Women’s Ministry director, a dear sister of my heart, Jennifer Yonke

Pinning Your Faith In The Precious Awful

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There are few things I can imagine that are as awfully precious as raising a damaged child with extraordinary needs.

It’s a great gift because I have the constant often-as-breath reminder that life is frail and immediate and full of unusual beauty. But it hurts like crazy because it’s full of defeat, loneliness and comparison too.

Look at those other families… look what they do with their time, their resources, and their kids. We don’t do things like that … can’t do things like that.

I wonder if they see we’re different.

I wonder if they care.

In a society full of perfect pins, pristine vistas, and filter upon filter, failure is an ever-choking tide – especially when your life paradigm is just getting everyone to the end of the day alive. A victory of epic proportions.

So what hill is worth dying on anyway?

Where do I need to go when I feel the differences in my family and myself so keenly?

Here: Christ and him crucified. Jesus loving me so much that he died to bring me hope – the real and best kind. This is my life filter – the only lens worth seeing through. Not what others think of me, but what HE thinks of me. Not how others raise their children, but what HIS GRACE in my life mirrors and shows for my own children.

So, pin that hope of love and grace in front of you, and pin yourself to it in the awful and precious alike.

Moment by moment.

September 3

 For I decided to know nothing among you except Jesus Christ and him crucified. 1 Corinthians 2:2, ESV

 But as for me and my family, we will serve the Lord. Joshua 24:15, NLT

A Hard Calling

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“M-o-o-o-o-m-m-m! Mom! Help! He’s…”

The rest of the sentence was cut off in a breathless pant as my oldest boy ran into the shelter of my arms, and just as quickly shifted to hide himself against my back, effectively placing my body between himself and the force of nature coming at him.

Chase. Angry Chase.

Though Aid stands over a head taller and a year older, he is no match for the fury in Chase’s eyes. I can hear his teeth grind together in his fuzzy head as his fists clench and his voice is a guttural scream: “How. Dare. You!!” He punctuates each word with an angry step as he advances and I can feel Aidan try and curl even further into my back.

One Lego. That’s all it took to produce the fury.

These moments of anger come like a wave, crashing on the shore and then ebbing just as quickly. For this is what it looks like when the damage to a little one’s brain messes with emotional control. Anger – swift, furious, and awful.

After deep breaths, calming phrases and prayer; after hugs and peace-making and promises to use words and not violence in settling the next dispute, the boys go back to playing and I feel the weight pushing on my shoulders as a sigh escapes – a sigh that does little to dispel the tension.

It’s like this all day, every day: fast anger, swift retribution, calming words, rational instructions, make it right…and repeat. Over and over. I don’t possess the wisdom or knowledge to understand what of each interaction is common to raising young children and what comes from deep, cancer survival damage. All I can do is put myself between them (often literally) and talk and pray until they listen.

So I hang my head and as I do, I see Aid, standing in the doorway, his young shoulders slumped like mine.

“What’s up, sweet boy?” I look up and try to paste a smile.

“Why is it so hard?” He answers a question with a question – the son of my heart for sure.

“With Chase…” My words are more a statement than a question for clarification. I know what he means. I can feel it radiating off of him. The frustration and exhaustion on his face a mirror of what I feel in my own heart.

“Honestly, sweet boy, I don’t know. But I know one thing for sure. This is your calling. I’ll be honest with you…” I take a deep breath wondering if these true words will relieve or burden. “Being the brother of Chase is probably one of the very hardest things you’ll ever do or be in your whole life. But it’s something Jesus has for you and it will make you strong in ways you can’t imagine. This is just something you…we…have to do. Jesus will give us the strength.”

He nodded against my arm, having crossed the room for a hug as I spoke to him.

I long to answer his question with a time frame. Just two more weeks of life-rending harsh moments and then you’ll be done… You’ll be strong enough and it won’t hurt like it does now. Ha. But so often, there are no time limits set to our sufferings and hard days. I just want limits so that I can make sense of it all. If it fits in my paradigm, then I don’t have to hold so very fast to the promise that God’s plans are good when I don’t feel or see them being so.

Your hard thing and mine…they are our callings. They aren’t the actions and interactions that keep us from the perfect life – rather; they are most often the God-planned life perfect in and of themselves. And they are ultimately, finally, sometimes-only-at-the-end-of-the-story for our good. So, lean in and learn.

Moment by moment.

September 2

“For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope.” Jeremiah 29:11, NLT

For all the promises of God find their Yes in him. That is why it is through him that we utter our Amen to God for his glory.” 2 Corinthians 1:20, ESV