Ellie

Eight Years

Ever since 2012, July 31st has been the hardest of lovely days to us because it ripped us apart and then stands to remind us every year that we are all still breathing. Because eight years ago, on July 31st, an emergency room doctor was walking into Chase’s room with tears in his eyes, speaking the words over us that changed everything:

“There’s a large mass.”
Tuesday, July 31, 2012

A few days before this strange anniversary day, Darcy and I were walking, trying to carve out a minute to ourselves, talking through the date, the memories, and how it still – even these eight years later – carves us open. [She, this sister girl child that we -perhaps foolishly in our own fear- told to stay in her bed in the dark, is a fourteen year old high school freshman and the sight of flashing lights outside her bedroom window as she curled powerless and scared still hold a vivid place in her mind.] But as Darcy and I walked, talked and processed again, Margaret pulled alongside us. She literally pulled alongside us in her car as we walked and she drove by and as we talked, friend Margaret, a wonderfully gifted photographer, smiled and said lovingly:

“We should take pictures. Eight years is a big deal and we should make it special this way.”

And so, a day later, we gathered at the local park, just Margaret, the kids, and me, and she walked them through a few minutes of life, with her words giving them grace and her camera catching them as they moved.
There were no showers, no hair cuts, no scrubbing up and making beautiful. Chase insisted it be “Cubs theme” and we just grabbed (hopefully clean) clothes out of drawers and went with it.

And suddenly, the shadow of late July lifted for a moment. We put aside the awful memories we experienced those eight years ago, and lived in the joy that is having eight whole years when you didn’t think you’d have any.
The perspective changed through the lens of a camera and a moment of stolen time.

We see the heartbreak, yes. Always.
But we choose joy.

And sometimes it takes someone pulling alongside you to catch the light a certain way and hand it to you when you need it most.

So here’s to eight years.
I will never stop being both horrified and amazed at this life of grace we’ve been given.

“Whatever may pass and whatever lies before me… let me be singing when the evening comes.”
10,000 Reasons (Bless The Lord), Matt Redman

Thank you for walking alongside us, dear ones.
Moment by moment.

[Please enjoy these beautiful, candid gifts that Margaret Henry Photography gave us this week ]

Of Trauma And Answers

Since early fall and the start of school, Chase has occasionally complained of feeling dizzy or “weird” for brief moments.

After lengthy conversations about drug interactions, undergoing radioactive iodine treatment for thyroid cancer, and so many tests to check his levels, we somehow made it through the holidays to January 14th, when Darcy came running to find me after dinner.

“Chase says his head is moving by itself and it won’t stop!” Somehow, it’s almost always Darcy who catches a seizure first, bless her heart. I ran to the couch with my heart in my throat, ready to ream him out for messing around when he angled his head to look up at me and the turn was all wrong. And then I saw it was all wrong because his eyes seemed wedged against the back corner of their sockets.

“You look funny.” He giggled up at me.

And in the next breath, his head started moving in that unmistakable rhythmic twitch that could only mean one thing: his brain was staging yet another revolt.

Several weeks and nearly twenty-four hours of EEG monitoring later, we were able to alert his teams during one of those dizzy moments and I got a call from his doctor within a day, informing me that Chase is indeed having more seizures.

For a moment, I found myself pushing back at the doctors with this news. “Wouldn’t he look asleep or dazed? He was talking to me, responding to me…”

“Yes, but,” the doctor quietly pointed out, “even though he was still answering you, we could see on the video monitoring that he was aware of the seizure. He could feel it happening even as you stood next to his bed.”

While I spoke to him, he silently, invisibly seized, and what I took for slight distraction in his manner was actually him not being completely present in that room with me. And truly, I can hardly think of anything more horribly powerless than standing next to your child, helpless to assist them, protect them, or even love them through a trauma – because you do not know that they’re having the experience and they can’t even find a way to tell you.

Since the time of the EEG results two weeks ago, Chase’s brain has been protected with higher doses of anti-convulsant medication, but there is a small piece of outstanding worry…

During the course of surgery and treatment for his initial central nervous system cancer, Chase’s brain experienced quite a few traumas. His neurosurgery team has always monitored the trauma areas through the years, watching for changes on scans or symptoms in his daily life and until now, the areas have remained dormant and Chase has remained asymptomatic, but there is a small chance that the continued seizures are a sign of change – because, you see, these new seizures are occurring on the undamaged side of his brain – an area where there has previously been no (and should be no) seizure activity.

And if the problem is indeed a sort of rupture of these trauma spots, there is a chance that they may resolve on their own, like a wound healing true on the top of your skin. But there is also a chance that a neurosurgeon might need to intervene for the sake of Chase’s brain. And if that second and far more rare outcome is required, it would most likely mean a surgical intervention on his brain – a thing that has not occurred since August of 2012.

And it’s hard to take the word “rare” as a comfort when it comes to statistics, because the fact that Chase breathes is rare. We are overwhelmed by the ‘what if’ of this scenario, but we also welcome the chance for answers, knowing that continued, inexplicable, unpredictable rounds of nearly invisible seizures are not in the best interest of who Chase is and what he can do.

And by the time you read this today, Chase will most likely be heading into an hours-long MRI, moved from late spring, to now (at the request of his neurosurgeon).

I wish I could tell you what was on my heart and how to pray, but now, as I write all this out, I find myself exceptionally weary of the damages, exhausted from a life where the prize for survival is a seemingly endless litany of complication and sorrow.

But I know you all will pray because you hold us up when we are too weak to think of the words for ourselves.

And there will be hope in the morning again.

Because God’s steadfast love endures forever.

Moment by moment.

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.

Story Lines

Dear ones, this month is a busy writing month for me, and as I decided I wanted to share a few lines with you. I don’t want to tell you too much about the plot yet, but suffice to say that one character is having a hard season in her life and went back to her childhood church hoping for answers, but so far, she doesn’t like what she hears. At all.

Enjoy the crazy ideas flowing out of my brain these days.

MbM ~

Ellie

His voice was softer, more introspective as he considered each word like a chess piece in a half-gone game. “If God’s light isn’t strong enough for your darkness – for the darkness of any man or woman who walks the earth – then he would not be a very good or strong God, yes?”
“Yes” She answered his expectant silence. “I mean no, he wouldn’t.”
“Exactly.” Triumph laced his tone. “That is what I am saying to you right now.”
“That God is not very powerful after all?” Her shoulders were numb from sitting so still against the gleaming wood of the pew.
“Ah, no, dear one. I am trying to tell you that God’s light is enough for your darkness.”
She jumped to her feet, and he slowly rose with her, as if he had expected just this reaction.
“No!” Suddenly, she was angry at this man; another in the long line of men who seemed to promise all good things to her. “You don’t get to tell me things like that – charlatan promises to help me sleep better at night. They are just words to you, Father, and yet you use them to offer me peace. I want no part in your placebo drugs of religion and peace and a light that is enough.”
“Placebo drugs?” The thin skin on his forehead wrinkled.
“An experiment – “He cut her off.
“I know what a placebo drug is, Vera. It is the untruth that becomes truth to the body that believes hard enough – that wants it enough.”
She shook her head. “It is the failure – the opposite of the help.”
“Who are you to say what fails and what does not? You see only a moment in time – one moment at a time. What if there are pieces of the story that are unfolding and you just don’t know the rest yet?” His tone was deliberate and challenging, yet somehow still loving. “What if what you see as a failure is actually going to turn out for good?”
“I see too much sickness to believe such a fairy tale, Father.”
“First it is a fake drug, and now a bedtime story.” He shook his head. “I cannot make you believe what you do not wish to acknowledge, Vera. But I can tell you that at some point, in some way, you will need something bigger than yourself to hold on to – to find hope in. It cannot be your husband, and it cannot be your baby. And it cannot even be your friends or your work, fulfilling though they might be. And until you let go of this that burdens you, and until you realize there is more to be had and given outside of you – you will sicken like one of your patients, Vera.”
“That’s a little dramatic, don’t you think, Father?”
“I have seen it happen, ch – ” He caught himself on the endearment and nodded once to her. “I have seen it happen. A heavy heart can eat away at your flesh and bones just as well as a cancer can.”
She hated his words, wanting only to be gone from this place she had mistakenly thought might have offered her sanctuary. “It’s too dramatic, Father. And there is no proof of such things. People survive bad things all the time – work at surviving for their whole lives even – without wasting away.”
His look was loving. “Ah, yes, it is sad and true, both. But Vera – and this is the last because I can feel your need to escape – ” She stilled at his knowing words. “What if they were not living at all? What is there’s more to be had than simply surviving?”
Untitled Work, Ellie Poole Ewoldt, 2020

Please note that this is a small part of a largely un-edited work of fiction. Any resemblance to persons living or dead is coincidental (not to mention disturbing).

Lessons From The Second First Anniversary

You think I would know by now that another shoe drops with each piece of news… I have debated writing this all down because it feels like I’m being a drama mama, and yet, it feels dramatic because everything is traumatic when there’s been a terminal fight. So, it’s true that Chase’s brain and spine are in the clear for now, but it was next-hospital-day news that revealed there is something growing in Chase’s thyroid. We have been told that it’s probably not a big deal, and I want to believe that with my whole heart, even though I know IT’S CHASE. All the necessary teams are getting onboard and there will be more tests and more days spent in the hospital. So it’s probably nothing. But it could be something. But we pray it’s not. Welcome to the roller coaster. The only thing we can do is buckle up and cling even more and ever more to hope in the moment by moment. ❤️
Chase Away Cancer Facebook page, January 11, 2019

It’s cancer. And the total mind-twisting news is that it’s actually a good cancer. (Yes, the term “good cancer” exists.) But it’s still another cancer and it’s somehow inconceivable to me that in nine short years, this sweet boy is facing a second battle. In this wind-knocked-out-of-us moment, there is so much to weigh us down and break us, but there is so much to be thankful for – so much blessing too. So, we choose thankfulness…and throw ourselves into the cancerous moment by moment again.
Chase Away Cancer Facebook page, January 29, 2019

It feels like I wrote these words seconds ago. I remember the pit in my stomach and the way it felt hard to breath. But it was a year ago now, and as I reflect on this crazy year of a second cancer, as we approach the second first anniversary of a diagnosis, there are three things that stay close to my heart, and so in honor of the struggle, I share them with you now. I hope you see yourself, see encouragement, and see hope in these words, for we are all in a fight of one kind or another:

At no point does pain reach a saturation point. In our experiences this last year, there has never been a moment when we thought, nor have we met anyone else who thought or said: “Oh, I have already experienced several years of pain and suffering, so it does not phase me as it once did. It is easier now.” Every pain is new like water on a parched ground, soaking deep and fast, and sometimes things hurt worse simply for the misplaced conviction that they should not hurt at all.

There is no modifier in a cancer journey. It isn’t “just” thyroid cancer, “just” stage one. There isn’t an “easy” cancer. Some are more complicated than others, some come with a higher mortality rate than others, but there is no easy cancer. Each comes with its complications, both physical and emotional. And in a disease where there is no justice, there can be no “just”. This is the broken world manifest in our broken bodies.

Make every moment count. I sign off every piece with the phrase ‘moment by moment’ and it stems from the edge-of-the-knife times when everything changes and the ground shifts beneath you. If I could take one thing from those first seconds of knowing, when the heart beats hard and everything in you falls and screams, it would be this: make the time count. Sometimes, I forget and am lulled, yet, how I long to keep it close even when my heart beats slow and all is well. Only the necessary. Only as needed. Always with grace. …moment by moment.

Because of the Lord’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness.
Lamentations 3:22-23

Friday, February 22, 2019 ~ one day after surgery

**On this past Tuesday evening, January 14th, Chase had another seizure, his first in six months. It was under five minutes long and he came out of it well and quickly, but he will be facing additional tests and labs, including another overnight stay in the hospital – all in the next month.**

Author: Ellie