Tag: faith

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).

When Everything Changes

“Relying on God has to begin all over again every day as if nothing had yet been done.”

C. S. Lewis (Collected Letters)

It’s funny how a single day can change everything. 

I was sitting in the top of a football stadium along the river separating Ohio from Kentucky, the sun warming the still air all around us when I saw a new message on my phone. 

And everything changed.

For eight months now, the anchor in in the harbor has been a “wait” word. Wait and see if the cancer grows back. Wait and see if it grows into other new, breathing lung places. Wait to even look with an ultrasound because these kind of cancers grow so slow. And these doctors who see the worst and the harshest…? Well, can you blame them if they don’t want to over-cut thin skin, over-treat weary souls, over-anything these precious littles? I certainly can’t. 

But the scared places in my heart wanted to blame and scream to stop the wait and start the fight. The cancer is slow in other bodies, but cancers seem to like Chase’s body too much, and the last one grew fast like a wild fire in the wind. 

Four to six whole months to even peek inside… the pictures and news would come right before Christmas and his tenth birthday. Four to six unchecked months for the cancer to go and do anything, anywhere. And of course, it might not go anywhere. But this is Chase we’re talking about and he tends to have the outlier story; the road less traveled journey.

But then, a message read against the sun’s glare on my phone at the top of a football stadium changed everything just a bit. 

For, you see, sometimes doctors change their minds. They talk to each other and pour over the charts and histories and results like a holy grail of sorts, and then they turn to each other and question why they should stick to the idea of four to six months when Chase is a blink-of-the-eye kind of boy. And so, instead of waiting for cold weather and holidays, the message said we do it now, in just a few days at the peak of the pre-Fall warmth.

And yesterday, with a simple phone call, everything changed again. 

Because it’s not just the scan that comes in a few days, dear ones. Sometimes doctors change their minds about treatment too. They chart and think and test and then they turn to each other and question the wisdom of leaving cancer to grow in Chase’s body where it grows too well despite official prognoses and data. And so, while treatment may not be easy for Chase, it is a precaution that has gone from a distant possibility to an imminent reality.

For the first time since October of 2013, our sweet boy will officially go back into treatment. 

It’s silly and crazy, because we’ve known to expect this since we heard the words “It’s cancer” back in January. But it feels different now that it’s here, and it feels urgent in the speed of a changed decision. And I think at the end of the day, the best way to describe our hearts in this is ‘joyful grief’. We are so deeply thankful that the wait is over for now, and that the doctors looked to each other and came up with the answers that were heavy on our hearts. We did not have to fight them for these changes. They came to our conclusions on their own and that’s a blessing of the best kind when doctors have to be like family members on the regular. So there is joy in that oneness of mind, but there is grief too. Once again, we push into pain for the long term benefit and willingly subject our precious son to incredibly hard things for the sake of his future quality of life. 

We have been told that we will hopefully know more by the end of next week. And it could all change again in a second. But until that time when the results are known, through that time of tests and procedures, and beyond – whatever may come – as long as breath remains – we cry out for grace and strength in the …

…moment by moment.

[All pictures are from this past weekend; fulfilling Chase’s dream to finally see his friend Robbie Gould play in real time. All our love and thanks to the Gould family for making this dream a reality for Chase.]

Of Conundrums, Butlers, And Finally Knowing Something

At almost twenty four hours past ten exact (and so long) weeks, there is news.

Chase is going to be having a full body scan.

They used to say that absolutely anybody who got thyroid sick like this had to have their full body looked at, but in the last few years, the doctors realized that there are some who need this level and others who really do not. 

And herein lies the conundrum that has lasted much of these weeks set aside for his post-surgery healing: Chase’s cancer lies low and quiet in the area where thyroid sick people really do not need a full body scan, but Chase himself stands tall and proud at the other end of the spectrum. If we were being honest, I always picture Chase holding the “high risk” sign marching at the head of the “high risk” parade, leading everyone who follows him into even greater unknown areas. 

So these last weeks, the ones who oversee his care here in Chicago have talked to different endocrine teams across the country asking; “Hi there, what would you do with a child like Chase?” (as we all do at one point or another…) And some have thought to stick to the guidelines of thyroid ultrasounds now and again, while others have said they would scan the whole body just to be safer than safe. And ultimately, there was no right or wrong path, just whatever is best for Chase. But what is best for Chase?

Outside on Easter Sunday

And so it came down to last night. And I thought I had the peace to hear whatever I was going to hear on the phone. I even thought I had the words I’d need to either accept or advocate…

In these weeks, I have prayed for wisdom and strength and told all the doctors that I feel unfit for this decision. Do you have any idea how beguiling the idea of a full body scan is to the average cancer parent who beats back founded and unfounded fear with every blink of their eyes? I am not equal to these challenges because the logical part of my brain parses clinical data even as my mother’s heart screams to GIVE HIM ALL THE TESTS NOW.

And then it came. The call last night… “I talked to Chase’s oncology team, and they feel that, given his complicated history, it would be far better to just go ahead and do the full body scan.”

And I knew such peace in that minute. Because each moment of care is ultimately about Chase being understood. And in that phone consult moment, he was known. At this time, it’s not necessarily the known cancer that is the enemy, but the cell secrets his body likes to keep quiet until they challenge him (and us) hard and fast. And now all the teams are on board around this idea: we are ready to be done with cell secrets for a while.

Doing labs in his Washington DC shirt

But there is a reason they hesitated to do this for him and it’s because the process is long and complicated. In order to ready his body for its close up, he will need to be taken off the medicine that keeps him thyroid-functional even though he lacks the actual organ, and he will feel, as they said yesterday, “not himself”. He will sicken and tire and just hurt for the medication we are keeping from his little body. The medication that just, in the last two weeks, has finally regulated and helped him to feel better. And it will take two full weeks to get him to this tired point. And then there will be successive lab days and they will marry with test days, and so the entire process, start to finish, will probably last two to three weeks.

But we will know. (at least all there is to know in this moment)

Making a new friend in the hospital; Chicago Cubs first baseman, and amazing encourager, Anthony Rizzo

So, I exhale in relief, and Chase, well, he inhales in apprehension. Because in his precious mind, to look at the body is to find cancer. Every time there’s a new test these days, they find another mutant cell.

“What it…?” he says. 

“We will deal and it will be okay.” I try to keep my voice even for him.

“But Mom, what if they find a new cancer and there isn’t a pill to take it away?” His nearly lash-less brown eyes are huge and his mouth twists around his emotions as he sits on the stairs and voices these too-big questions.

And God help me, I looked into his eyes and I broke and lied. Because there are certain things we don’t ever want to have to tell our children. “There will always be a pill.” Oh God, please don’t ask me to ever go back on my word to him…please. 

But he knows me and he knows enough. “But what if there isn’t…?”

“We will always do as much as we can, my sweet boy,” I reach for him. “I don’t want you to worry for these things if it isn’t time to worry, okay?”

He nods. “Okay. Just tell me this. When I stop breathing here, will I start breathing with in heaven with Jesus and Mia?”

I swear that I stop breathing for him. How are these things even in his heart? “Faster than you can breathe, my love. Faster even than you can think.”

“Okay.” He nods as the fear fades off his face. In this moment, he is not afraid to die, as he sometimes is when he thinks about hospital things. Today he was just afraid to be alone and I could tuck that fear away for him, for a moment if nothing else.

“Tell me this,” I force a smile as I feed him the line I always do when he sits in the fear too long. “Are you planning on dying any time soon?”

He grins and jumps up. “No! I’m going to ride my bike, okay?” He pauses and switches to his most authoritative tone, “And hey, you need to tell my doctor that when they finally get this cancer out of me, I need to start my growth hormones again because everybody is taller than me.”

I smile back at him, thankful he is diverted for the now. “Do I look like your butler?”

“Yes!” He giggles and then is out the door and into the sunshine.

Chase (as “Walter Payton” with a Robbie Gould jersey) signs an autograph for Grandpa Poole after his school ‘Famous Americans’ presentation last week

One minute is the agony of decisions.

One minute holds the beating back of brutal questions that have no good place in the head of a small child.

And one minute, we are riding bikes and being sassy in the sun.

This is life with Chase.

Moment by moment. 

“Now we see things imperfectly, like puzzling reflections in a mirror, but then we will see everything with perfect clarity. All that I know now is partial and incomplete, but then I will know everything completely, just as God now knows me completely.” 1 Corinthians 13:12-13

Of Waiting, Believing, And A Rusty Leg

Yesterday was not the day we expected.

The outcome could have been so much worse and for that, we praise. However, it was a shadow day, a “cancer” day, a reminder that we live in and with something that can threaten whenever it wants. It was a day for remembered dependence on God in ways that summer pool days don’t always impress upon me.

At the end of it all, we were all six under the same roof with no hospitals or sirens and we slept – truly slept – and for that I’m thankful.

At this moment in time, here’s all I know for sure: there’s a mercy that’s new every morning and a proven refuge in times of trouble.

Yesterday was a day when it was easier for me to throw up words onto social media sites, but I’ve copied them here today. May they encourage you to wait on Him, trust in Him, and see your wait as a beautiful part of the journey.

Moment by moment.

Those who live in the shelter of the Most High will find rest in the shadow of the Almighty. This I declare about the Lord: He alone is my refuge, my place of safety; he is my God, and I trust him.” Psalm 91:1-2 (NLT)

10:15 AM —

In the first hour of this morning’s summer camp, I got a call from a friend at church indicating that Chase had been brought in complaining of a headache, right eye pain, and lack of feeling in his right leg – even some “dragging” of the leg.
[cue the parent panic…especially as his tumor presented on his left side]
By the time I got to him, he could walk, he’d never stopped talking, and he showed no signs of seizing, but he was so tired that he spoke hardly at all (for those who know Chase, you know this is out of the ordinary) and slept for a few hours following my bringing him home.
He’s now more “himself”, but keeps resting and sleeping – saying his head hurts and his leg feels “rusty” even though it works.
In times like this, it feels impossible not to panic, but we are trying to live in grace in the moment.
Right now, for me (Chase’s mom), that looks like this: setting a timer for 30 minutes and only checking my email when the alarm sounds – to avoid frantically opening the mail app on my phone every 20 seconds in hopes of hearing from Chase’s doctors.
It could be a virus, it could be his growth hormones, it could be nothing, it could be something… I don’t know and part of me doesn’t want to share this, but I’m writing it out because I believe I’m not the only one who is having to actively pursue calm and joy in the middle of a day I didn’t expect.
Peace is not coming naturally like breathing, so, I am CHOOSING it.
Choosing peace.
Choosing hope.
Moment by moment.

7:30 PM —

You all are so awesome for walking this journey with us.
I just heard from Chase’s doctors… apparently it could be one of a few things (no easy road for our boy), but it was most likely either a seizure of some kind, or even more likely, some sort of migraine episode…because, apparently, kids like Chase start getting more/frequent/painful migraines.
Oh, the side effects of breathing…
Only time will tell what really happened today.
If this is once-and-done, it was probably a migraine, but we need to watch ever so closely and at the first sign of a repeat performance – call. Don’t pass GO, don’t collect $200… CALL.
So, the weird day is done… And the weird life continues.
I want to be free of the wait for “the next thing”, and yet I choose to believe the wait is as purposeful as every other moment.
Tomorrow is a new day with new mercies.
Taking it moment by moment.
Thank you for walking this with us!

Chase still has a headache, but perked up in order to help with his evening shot.

Life Lessons From Broken Glasses

It seems like life is all about what we can see.

But what happens when we can’t see?

What happens when the paradigm blurs and we’re left to wander, not even in the dark, but in the fuzziness – life without definition?

Mother’s Day, sitting on the front porch in the sun…

He lunged before I could stop him. I should have seen it coming. It’s happened so many times before. “BUT I WANT TO…!” The argument is always a tired and tried variation of the same.

Chase pushes the boundaries… I reestablish the boundaries… Chase struggles to give an appropriate voice to his disappointment.

Then comes the lunge – and if I’m lucky and wise; I see it coming.

But on Mother’s Day, of all special days, I did not. And my glasses hit the pavement with a sickening crack, splitting clean down the center – as clean a break as our lives are messy.

His screaming stopped as the import of the action sunk in. A damage on the weekend…no back up glasses, no contacts, no nothing. Just blur. The world was suddenly reduced to a foot or two in front of my face.

Driving only as a necessity… Clean the floors of toys so mom doesn’t trip… Try not to walk into anything.

“I’m so sorry, Mommy”; he said in his remorse-filled way. The anger having drained as fast as it came. “Can’t we fix them?”

Yes, but not now. I would stay in a state of undefined navigation for four days.

At first, on the surface, the lesson seemed to come for Chase: your actions affect others. Sometimes the anger will leave more than sadness – it will leave brokenness that can’t be easily repaired. Those were the thoughts that unfolded as we stood on the front walk and stared at the broken pieces of black plastic that had been my constant companions for years.

But somehow, in the four days that followed, the lesson turned from Chase to me.

How do I live when I can’t see?

Things are so much easier when I can either close my eyes for total nothingness or open my eyes for total clarity.

I found that I did not like the in-between. The waiting. Surrounded by things I know, but could not see. Things that were not clear until they were close.

The truth of seeing life “through a mirror dimly” is frustrating. The truth of a “God, can’t you fix it?” prayer answered with “Yes, but not now” is often more than we want to bear.

Shapes rise up out of the distance and become clear just as they hit you in the face: like cancer, like the child in trouble at school, like the husband who has to work late again, like feeling alone. Clarity makes for safety while the lack of it forces me to rely on something other than sight – something outside myself.

Funny how broken pieces of plastic on Mother’s Day force me into “seeing” weakness and strength in new ways. And, if I’m honest, I wasn’t so much “seeing” as “re-learning”. Perhaps we are – at times and seasons – robbed of the sight we most rely on so as to SEE HIM.

I can be weak because HE is strong.

I can wait because HE is time itself.

I can rest because HE fights for me.

And when asked to, I can abide in blurriness because the truth is that my life is only undefined to me. To God, our lives are deeply, perfectly clear. Always and forever.

So, in the blur, the noise, the wait for faith to be sight, we wait on Him: moment by moment.

“And Lord, haste the day when the faith shall be sight, the clouds be rolled back as a scroll; the trump shall resound, and the Lord shall descend…even so, it is well with my soul.” ~ H.G. Spafford

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