Sing Over Me: On Grief and Joy

The end of July is a strange shadow season to me. Some years are easier than others, but not this year. Perhaps it is the marking of the first decade, but even now, the feel of the hot Midwest wind, the position of the sun on the earth; all of the July-ness seems to drag me back to a moment in time when the fabric of our lives felt like it had been torn in two. It is a memory now, yes, but I’ve come to equate this time of year with a deep grief and it tends to resurface every year no matter how I prepare or how far away from it we are now. And every year, I ask myself why it comes up, where it goes when it passes (which it inevitably does), and finally, how to hold it carefully with open hands and a purposeful heart. 

I think I will probably ask these same questions until the day I die, but as I wrestle and ask my way through them this tenth year, I think about everyone who ever stood bedside and wished for less suffering even while they’re thankful the one they love still breathes. And I think about everyone who ever stood graveside with a broken, bleeding soul, still breathing pain-filled thanks that there’s no more pain. My heart goes out to everyone who has ever smiled through their tears and everyone who has ever cried for no reason other than that life is just soveryhard.

My heart is for you as I struggle with the questions again, wrestle through the shadows of a timeline long past, because I cried most of this last week. The good and the bad were all mixed together and that brings a lot of feelings.

It’s such a gift. 

We are so thankful.

Chase is a miracle.

But he’s also been hurting more than not for ten years and we’ve all hurt with him. We are tired and I know he is too. 

Thinking through all of these pieces, I cried because I couldn’t see the purpose for the shadows. I cried because I wanted to move past this late July part and move into the place where I could feel the light again.

But the light didn’t come right away as it sometimes does. I felt empty. And after fighting it and excusing it and even trying to tamp it down all week, I realized that it is not so bad to need to grieve. It is not wrong to weep for the brokenness that is as ever present as Chase’s very life.

We celebrate Chase, but we weep for him too. Does that make sense? I hope it does. It’s how I can smile as I watch him run even as my eyes fill with tears.

The good and the hard rarely come in their separate turns – have you ever noticed that? More often, they seem to arrive all wrapped up together in such a way that thankfulness and grief walk hand in hand – usually with a white-knuckled grip. 

So where did I land in my grief this time around? I landed here: there is One who knows; who understands. Psalm 56 describes how our tears aren’t wasted to Him. Our grief isn’t meaningless and our struggles are important and known. 

You keep track of all my sorrows. You have collected all my tears in your bottle. You have recorded each one in your book.

Psalm 56:8 NLT

So, if you want to, if you need to today (as I have needed to this week)…I hope you are able to cry. It is not a bad thing to mourn all the things we wish were other than what they are. And afterwards, dry your tears knowing they were Seen and remember with me (as I remember in this Chase fight) that while the pain and weariness might feel like forever and a day, it’s only a dark night and the dawn is coming. And when the dawn arrives, there will be joy once again.

Giving raw thanks for Chase’s life and unfolding story…

Moment by moment. 

With his love, he will calm all your fears. He will rejoice over you with joyful songs.

Zepheniah 3:17b

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 Procrastination, Sarcasm, and Staying Out Of The ER

Incredibly, 2019 is down to being measured in hours and minutes – the end of both a year and a decade. This year has seen us through many, many new things and all along, we have prayed for the strength to choose joy. You’ve spent the year crying with us, so now, I invite you to laugh. And to that end, I’ve compiled a few status updates from my Facebook page.

I chronicle these things (and have done so for many years now) because life is too short and childhood is even shorter and there are too many parenting moments when you’re faced with the choice of either laughing or melting into a puddle of tears. …and that’s all without even touching illness and hospital days and the simple act of processing it all. So, as much as possible, despite the changes… we choose joy. And we choose to laugh. 

Many of the scenarios include personal hashtags: from the most common – #LifeWithBoys, to the most sarcastic [playing off our secret parenting fears] #NotScholarshipMaterial, as well as a few guest appearances by legendary grandfather, Ed Poole.

Did you just hit your brother in the [inappropriate content] with a roll of wrapping paper?? #FaLaLaLaLotsofTherapy #LifeWithBoys…but make it Christmas

HOW MANY TIMES…

  • …have we talked about not licking the walls?
  • …have I told you to keep your ever-loving eyes open when you’re running??
  • …that punching each other is not a viable communication technique?
  • …that your dirty socks don’t magically clean themselves in whatever god forsaken corner of the house you left them in?
  • …that you can’t FaceTime me to fix you a sandwich? Ever?
  • …that your can’t wear shorts when it’s 30 degrees no matter how much it breaks your heart?
  • …that your life isn’t over even if you can’t get your armpits to make fart noises?
  • …that if you don’t wear underwear, you might catch something in the zipper?

“I have a question, Mom – if that even is your real name…” #LifeWithChase

“Here, Mom. I got this paper a week ago, but I accidentally left it in my back pack and it has to be filled out by tomorrow, so, you know, you should probably look at it now…” #LifeWithBoys

“You know that’s not true! I would never hit him in the — wait, can I go back and try to say it again with a straight face?” #LifeWithBoys

“Oh my word, boys! If you don’t stop it right now, somebody’s going to get hurt!!”

[awkward crickets]

“Uh, that’s kind of the point, Mom.”

Hi, yes, we are handling football season very well over here… how are you…? #NoFightingLater #NuancedFierceLooks #NotoriouslyFlamingLambeau #NaughtyFlatulentLads

“Don’t worry, Mom. I won’t be tempted to talk to you while I’m doing my math homework. It’s not like you can help me with it or anything.” #TheOGNotScholarshipMaterial #SchoolForTheGifted

“I am in so much pain.”
“Are you really?”
“I think I tore something in my knee.”
“Probably not.”
“Okay, but I’m almost sure I tore my ACL.”
“No.”
“Everything is torn.”
“Still no.”
“Well, for sure my heart is broken.”
“No, just no.”
“Can you sprain things? Am I sprained?” #TeenGirlSquad #DramaticEmphasis

When Bob is on the West Coast for a few days… Also, that raise. For real. 

“But why do they call it a seizure salad? Seizures are not delicious.” #ItsAMedicalLife

[overheard in the house where no doors have been changed in three years] “I didn’t know there was a door right there, and now my head hurts.” #NotScholarshipMaterial

Meanwhile, on Instagram, there are orange socks of protest.

Buy one bottle of “super disgusting” Watermelon Cucumber Lemonade, and suddenly, I’m the villain of the piece. Psh. Troglodytes. #LifeWithKids

Amen. Let us close in prayer. 🙏🏻#MondayMotivation #InspirationalQuotes #LifeWithBoys

Where do I hand in my resignation, please and thank you…? #MondayUNMotivation

“What if I put a pillow in it?”
“Nope.”
“…even if I wear a helmet?”
“Um, super no.”
“But it’s just one flight of stairs!”
“No!”
“…in a box!”
“Son!”
“But it’s not like we’ve got priceless artifacts on the walls.”
“You’re grounded forever.”
“Well, you’re a crusher of my dreams.”
“What was our ONE rule for Spring Break…?”
“I know, I know.. ‘Mom’s Not Taking Anyone To The ER’…”
“Right.”
“For the record, you never let us do anything fun.”

“Mom, wanna see a magic trick? Um, but also, it kind of includes fire… are you okay with that?” #NotScholarshipMaterial #LifeWithBoys

“I’m sorry he hurt you, but I think that’s the price of doing business when you punch him in the [inappropriate content], child.” #WhyWeDontHaveFriends #WhyWeCantHaveNiceThings

“We’ve been over this before… NO, you may not change your legal name to Aaron Rodgers Ewoldt.” #LifeWithAGreenBayFan #SendHelp

[yelling] “OKAY. HERE IS THE RULE OF THIS FOOTBALL GAME: IF YOU BREAK ANY BONES, THAT IS A FOUL.” #JonesinForTheER

“What? He tried to take my sandwich!!” – explanation for baby brother’s black eye #LifeWithBoys #KnuckleSandwich

“I think my pancreas hurts.”
“Do you even know where your pancreas is?”
“Wait, that’s a real thing? I thought it was just a made up word! I was just messing around!” #TeenGirlSquad #DramaSpleen

“But we’re trying out my new helmet!” #HeadCase #LifeWithBoys

That feeling when you’re super happy to be out of the hospital, but you’re also a little worried about your ride home… 🤣#TheLegendaryEdPoole

“I know you’re enjoying the battle, but can you die quieter? You don’t want to disturb the neighbors.” #LifeWithBoys

Goodnight and goodbye, dear old 2019 …

Moment by moment. 

“The lines have fallen for me in pleasant places; indeed, I have a beautiful inheritance.”

Psalm 16:6

Of Happy Holidays

We did not ask for this year, but we do not resent it being given to us either. Sometimes, life is a struggle, but then it settles to pleasant places and we realize that these journeys we take have been destined for our good – to give us a future and a hope – all along.

The last twelve months have held all that you would expect them to hold in a family of six – church, jobs, writing, speaking, school, orchestra, band, plays, student council, sports, and more. But in perhaps one of the most surprising and yet unsurprising turn of events this 2019 (something you all already know if you follow CAC), Chase was diagnosed with a second cancer. It started in his thyroid, but has moved into his lymph nodes, and as of November, they are monitoring his lungs and kidneys as well. There have been surgeries, procedures, treatment, and seemingly endless days in the hospital. There have been tears and anger mingling with the joy and laughter, and over it all, the whispered prayer continues on: “Lord, please use this to strengthen and not to break.”

We are overwhelmed, yet God is faithful.

We are tired, yet God never sleeps.

We grieve, yet God takes the pain and gives hope in its place.

And isn’t this why we mark this Christmas-time, life-long celebration? The moment that tiny babe drew breath in a barn cave with the animals all those thousands of years ago, the war was won. Hope will always win because God’s love is greater still.

Choosing hope.

With all our love – moment by moment…

The Ewoldt Family

[Bob, Ellie, Darcy 13, Aidan 11, Chase 10, Karsten 8]

Find us all year:

  • www.chaseawaycancer.com [don’t forget to subscribe when you visit!]
  • Facebook: “Chase Away Cancer” or “Ellie Poole Ewoldt”
  • Instagram: Ellie Poole Ewoldt

[Photo credit: Margaret Henry Photography]

Sibling Speak, Pt 2 [VIDEO]

In some ways, for her, it is the hardest. She was the oldest and remembers the most. She is the oldest and sees the most.

There are many days she would gladly slay when he is manic and won’t get out of her face for so many reasons – too many reasons. But there are just as many days she would gladly slay as she sits in tears, horrified that we live in a world where people look on her little brother with anything other than love and acceptance.

In many ways, she is ‘other’ just as he is – her soul too old for her body, her eyes witness to many things kids her age will never see in their whole lives. She lives with the guilt of resenting something and someone who feels extremely and more temporary than most. She worries that her loved ones will always stay alive and only stay close.

And sometimes, she crawls into bed next to me and needs to talk through how once upon a long-ago July, I yelled for her to stay in her top bunk even as her dad carried a seizing Chase out of the bedroom and the emergency lights flashed through the dark of their bedroom window as her whole world changed before she knew it – before she even ever fully woke up.

The life of a cancer sibling is often a silent, supporting role. It has to be, and they do it so well. But here, in her own words, is a little of Darcy (with some “help” from Chase). This is raw, unfiltered, uncut – All heart, all sibling, all laughter, all pain, all in.

Moment by moment…

 

This post is dedicated to the siblings of children with cancer and special needs. Please never forget that we see your patience and bravery. You are amazing and beautiful in the struggle.