13×13 – “$13 For 13 Years” – aka: Chase’s Birthday Fundraiser

[photo: Margaret Henry]

Monday, December, 12, 2022 –

By all rights and data, our precious Chase should have never seen a 3rd year, let alone a 13th birthday! Yet, here we are and Chase still lives and breathes joy (and sass) into our family and the world around him.

Once again this year, Chase asked that for his birthday fundraiser, all donations be equally divided between Ann & Robert H. Lurie Children’s Hospital of Chicago and the Anthony Rizzo Family Foundation.

And honestly, we can’t think of a more fitting plan! Lurie has brought Chase life more times than we can count, and the Rizzo Foundation has instilled so much hope – and Hope and Life go hand in hand in so many precious ways.

So after much discussion with our Lurie and Rizzo families, THIS PAGE was put together. All the funds will rest there, so we can see a grand total, and then when all is said and done, the Rizzo Family will write a check for half of the total, on Chase’s behalf, to Lurie Children’s – because of YOU, dear ones!

Would you consider making a donation? You can give $13 (or a multiple of 13…or more!) in honor of Chase’s 13 years. Every dollar counts – and it feels like it counts double this year – as the dollars will go to help a child like Chase and a family like ours – often in their most stressful, heartbreaking moments – both in the hospital with Lurie and around the country with ARFF.

With your help, we can contribute to research, resources and encouragement for so many children like Chase.

On behalf of the fighters and families supported by Lurie Children’s Hospital and the Anthony Rizzo Family Foundation…

THANK YOU.

**PLEASE feel FREE to share the fundraiser link far and wide!!**

Of Insurance, Hard Things, and TEN YEARS MORE…

It’s been a while and it’s been hard to put into words… 
This almost done Fall has been a strange, stretching time filled with both wonderfully normal things, and hard, intense growing things – or, at least I hope we’re growing from them.

Some weeks ago now, we began a struggle to have Chase’s insurance continue covering a couple of his medications. 
I will forever be thankful that we weren’t fighting for an anticonvulsant (a seizure med – without which, we’d all be in really big trouble), but one of the things we were fighting for was the medication that helps him with his executive function. And without it…? Everything is just MORE. There’s more energy and laughter, yes, but there’s also more anger, frustration and sadness too. And it’s all coming quicker – shot from a damaged and dis-regulated brain – faster than Chase or any of us can handle. 

We have been given so much grace and peace to do this thing. And yet, all the other things that don’t get done during this season – that’s where it hurts. That’s where and when the caring for our sweet boy pulls at whatever is left of our patience. It’s a weird in-between place where we know everything will be okay some day, but today is not that day. So we breathe, beg for extra grace, and walk… moment by moment, knowing as hard as it is for us, it’s equally, if not exponentially harder for Chase himself.

…and yet, dear ones, even as intensely weary as this season is, even as we liaison with his doctors and watch him carefully for signs of liver and heart issues until the January MRI, dear ones… tomorrow, Monday, December 12th, Chase Stratton Elliot Ewoldt will be thirteen years old. An actual teenager. 

In some ways, it’s a very strange thing because his chronological age will be 13, but his intellectual age is a sliding scale… and the age of his heart and bones after all that he’s seen and done…? It’s got to be near 90, if it’s a day. 

But I remember so clearly the moments at that first hospital conference table when we talked about the miracle it would take to get him to his third birthday. That third birthday was the goal…and while all the words were positive and hopeful, I felt it in my heart like I could see it in their eyes…nobody expected him to see the day.

So, to see the day…plus TEN YEARS MORE…?

That feels like an incredible moment in the hard journey. And we are treating it as such.

So watch this space all Monday… “$13 for 13 years” celebration kicks off here and I’m so excited to see how our celebration of Chase can impact life for so many others like him. *watch for the donation link in the morning!*

Looking forward with great hope…
MbM.

Photo: “Chase Running”, by Margaret Henry

When I Need To Know

It was hour four. 

We were barely into the new school day, the new school year.

It was hour four when the first police car came rushing past me on the trail where I was walking. It could have been going anywhere, but the most obvious, most straightforward destination was the public high school little more than a block ahead of me on the road…and my heart dropped.

Not two minutes later, another car with its bright lights shot past; the breeze in its wake reaching me where I was already walking faster…where I tried not to run.

I could hear more sirens in the distance. And by the time I reached the top of the hill, the street was closing down. 

“Please no, Jesus… not this…” 

Within minutes, parents began gathering on the street corners, outside the perimeter. And as I watched, an official and unmarked car pull onto the sidewalk in front of the first door, and men with serious faces and bulletproof vests pulled out a floor plan of the building, laying into it to study. And as a command center appeared to be establishing in front of my eyes, the text came through my phone:

“We are in a lockdown. I’m safe. I’m in [my class] right now and [the teacher] barricaded the door and has a bat.”

I stood outside the building, as close as the police would let me, and there was nothing I could do but picture my baby crouched at a desk somewhere inside while I texted her:

“I love you.”

It all passed in what was probably minutes, but felt like lifetimes. But even when the streets re-opened and the lockdown lifted, my heart just wouldn’t be still within me. 

A little later, she came home and I went running to her and hugged her so close and she told me about the cries and fear and how she had felt so calm and I was so, so thankful, and yet my heart was not quiet within me. 

I stood outside.

I had felt the earth under me as the unmarked cars drove fast to reach the high school in time for some as yet unnamed threat. 

I had watched them unfurl the floor plan to the building. 

I had to stand outside, feeling all the helplessness, while my baby girl texted me from the classroom – where the teacher’s desk, a baseball bat, and the bravery of the room was all that stood between them and a threat. 

If it was over… why was my heart still hurting? It was like I was full up of all these feelings that were no longer needed, but had nowhere else to go. And it left me questioning where we put the fear and the anger and the horrible helplessness? And why do those feelings insist on festering long past a trauma point?

My heart in turmoil, I did what a mama often does: I turned inward and began to make lunch. 

“What exactly happened, Mom?” Karsten, my youngest boy, walked into the kitchen with worry still in his sensitive eyes and voiced the question we all were thinking. 

“I honestly don’t know.” I was auto-piloting the conversation. I just wanted to finish making the lunch and sit down for a while, not talk to anyone for a while, take deep breaths. “All I know is that it wasn’t an active threat, and it’s over now, but those are all the details I have. Don’t worry, buddy.” I wanted to laugh as I heard myself say the words – heard myself tell him not to be anxious when my own heart still beat so unsettled within me.

He sighed as he wiped fingers through his too long hair. “I just… I need to know everything. I feel like I can’t relax until I know exactly what happened, Mom.”

His words stopped me dead and I heard myself in them. I heard the disquiet, the unsettled beat of my own heart, and I heard myself not just that day in a moment of school fear and threat… oh no, I heard the echoes of my voice every time something has happened that I don’t understand:

“I just… God, I need to know everything. I feel like I can’t accept this from you God, until I know exactly what happened.”

I say it all the time. But when it comes to the heart of it, all my digging and demanding brings me more anger, not stillness – and certainly not peace.

Dear ones, I wish we had all the answers. I wish everything before us was perfectly clear and every pain came with an apparent and appropriate purpose laid out neatly at the beginning where we could see it right away. I wish that so, so much for myself and for you too!

But I believe that true heart stillness came not in the answers, but in the presence of God himself. 

It’s strange because stillness is such a peace word, and yet, in our faith journey, it’s often a concept we’re fighting for. Stillness is not easy when the world isn’t still around you.

There are so many questions we hold in our struggling hearts. There are questions on issues that are very near and dear to us. And there are heartbreakingly questions that we might struggle with, fight for stillness over for every single minute of this life until we look into the face of Jesus himself and perhaps then see the answers in the scars on his hands and feet. [Won’t that be an awesome day?]

And until that day…the same day that all the tears will be gone forever…until that day, I think the best and only answer is to press on. We aren’t to the end of the story yet…

Lord, I trust in your unfailing love when my heart is unsettled. 

Lamentations 3:22-23

Lord, I trust that your plans are good when they feel too hard. 

Jeremiah 29:11

Lord, I accept what you give even when I can’t see the “why”. 

Job 13:15
Through a mirror dimly…

Moment by moment.

Epilogue (of sorts): The first day incident at the hight school ended with the loveliest and best resolution possible in that there had been no malice or prank, but rather a horrible, frightening mistake that couldn’t be treated like a mistake until after the building had been secured. As always, we are so deeply thankful for diligent and compassionate first responders.

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

Dear Self: Grace In Hindsight

[originally posted in 2019 as A Letter For The Minute Before]

Dear 2012 Self,

Tonight, you are about to climb into bed – utterly beyond caring after days of worry – too tired to do more than collapse. 


I know you saw how Chase’s hand shook when he was taking off his shoes in the hallway tonight. I know you saw it and it stopped and so you doubted yourself. I know you’re secretly really angry because the doctors aren’t listening to you and don’t know.


It’s okay.


Everybody wishes they could see things more clearly at times. Everybody wishes other people had the answers when they haven’t a clue.


Tomorrow morning is going to come earlier than you think and it’s going to bring the answers you’ve been wanting so desperately, but they will come with a price. A big one. Chase is in more trouble than you think he is.


So sleep deep tonight. And when Darcy comes into your room in just a few hours, listen to her the first time – she knows what she saw. 


[Oh, and for the love… put on a bra before the firemen and paramedics walk through the door – you’ll wish you had it on all day.]


Kiss everyone extra sweet and hug them all a little tighter when you tuck them in. Everything you know right now is going to twist and vault like a bad case of vertigo.


You are about to find out that you’re both weaker and stronger than you think. And that God’s love and grace is worth it all – despite all the times you will scream and fight and hate Him just a little bit for what will feel like unanswered prayer. 


We know Chase was the accident baby. The one who showed up despite the birth control. But I think you’ve always known in your heart that he was special. And we’ve confirmed it a thousand more times since you first thought it when you held him tight at birth.


So sleep deep for these last few hours before everything changes. 


This isn’t your fault. It’s nothing you did or did not do. That’s not how this works. 


It’s okay to cry. And believe me, because it seems crazy, but joy will come when you least expect it – even as you sob.


Give yourself grace and be real because it’s about to get really intense. 


Life is precious.

Sending you a big hug from 2022 – 

Your Ten-Year-Older Self