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The Letter

Every year, in the middle of August when the school doors open wide, my dad stops extra and special to pray for my kids and he slips them a verse to hold close for the whole year ahead. This verse is always printed on colorful paper, laminated and trimmed so carefully by his own hand, and most importantly, is something he has thought and prayed through – often for months before the moment. He waits in stillness, asking the Lord what word is needed for all of his grandchildren as they head back into their classrooms for another year. And then, with verses in hand, he challenges them to hold the God words close in their desk, backpack, locker, or binder, so that whenever they see the colorful paper, they will remember that they are known and loved.

And every year, it’s something of a tradition for him to show up on the first morning of the first day and share breakfast with the kids, laughing and energizing them, and then talking through the verse and praying over them before they leave the house and the early morning sunshine around the breakfast table. But this year, his words came differently. They came, most purposefully, in the form of a letter, and I felt the printed words not just for my children, but for my own heart too.

So, with his permission, I am sharing the printed letter words with you here – this is Chase’s copy: because Chase, but also because this letter, this verse, even the quote (only my dad – #girldadgoals – could mix the Bible and a Hallmark holiday movie together so well) speaks into the often broken-hearted, burned-out feeling of being other, of having nothing of value to offer, and even of hard life things that just don’t relent.

The letter is shared in its entirety below, and I hope it leaves you as it did me: knowing that we are each unique and purposeful, meant for good things by the One who loves us so. Now, here’s my dad to Chase…

Dear Chase,

This year, I’m sending you your school verses in a letter.

Why? Because you are a letter. Have you ever thought of yourself as a letter? You are. You’re a living letter, a living epistle, sent out to all you meet; at school, at home, at church, in your community, etc.

The goodness, kindness, wisdom, and love written on your heart is being shared with everyone the Lord brings across your path. In that sense, you are His letter sent out to put Him on display, and make the world a better place.

To remind you of your unique one-of-a-kind mission, place these laminated verses somewhere so you can see them often and be reminded of how special you are to God, and to others (like Mimi and Bapa).

In this school year you will definitely grow physically. You will also grow in your knowledge of history, math, science, English, etc… The most important area of growth this school year, in fact, in all of life, is your growth in godliness. And it is towards that goal that both Mimi and I pray for you.

The back and front of the laminated card reads…

“You are our letter, written in our hearts, known and read by all men; being manifested that you are a letter of Christ, cared for by us, written not with ink, but with the Spirit of the living God, not on tablets of stone, but on tablets of human hearts.”

2 Corinthians 3:2-3

“…we are all, in some way, living letters, unique souls, slipped into fragile human envelopes stamped by our Creator and sent into the world with a story only we can share…”

Signed, Sealed, Delivered: The Vows We Have Made, Layton, Williamson, Hallmark, 2021

Moment by Moment.

Keeping It Interesting

This one… he likes to keep it interesting, doesn’t he? We spent yesterday morning talking with his endocrine team after some really wild labs.

 
Chase’s numbers are suddenly kind of crazy and it could be for a lot of different reasons, but the most important and immediate concern is getting his levels back under control – and quickly. 


You see, the longer his levels are all over the place, the more likely his thyroid-free body is to create a favorable environment for thyroid cancer re-growth – in his lymph nodes, especially. [spoiler alert: we *super* don’t want that]


So for now, the plan is to make immediate changes to the medications that are helping his body regulate things, and then we re-test everything in a few weeks.

 
As a parent who walked into this childhood cancer world under the auspices of a brain tumor diagnosis, waiting to re-test is a terrifying prospect because brain tumors often grow incredibly quickly and hours to days can make a huge difference in the end result. But… as Chase’s [very patient] endocrine team has had to remind me many times over the last four years: thyroid cancer is a different cancer with its own unique schedule of growth – in that way, at least, it is a far more gentle cancer. 


So we sit for these weeks until the re-test and trust Chase’s weary body and his levels to the One who knows him best.

Moment by moment.

As It Should Be

The dark of the room matched the black of the ultrasound screen as I watched white lines flutter and join, flutter and join, the movement changing every time the tech changed the position of the probe on my boy’s small chest. Slowly, I looked down at his hand, held tightly in mine, processing the questions from the team: “Has he fainted? Have his lips turned blue? Does he complain of pain in his chest?”

Before we started the day, Chase told me he wasn’t worried, but in the moment, he wouldn’t let go of my hand, he refused to eat dinner the night before, and as I woke him from a sound sleep, he wouldn’t stop repeating: “You need to reschedule this appointment”. Fear has so many facets to it, right, dear ones?

The tests were finally completed and the consultation too, and when it was all over, we learned that Chase’s heart was as strong as it could possibly be. In fact, his rhythms neared normal – one of the very few times in Chase’s life that normal has been applied to him. 

In the small generic exam room, I sat in the chair across from the cardiologist and accepted her words. I was relieved, but I felt static too… a sort of nothingness. And as I looked at Chase, seated on the edge of the exam table, he wore a deeply tired expression even though he’d just been informed that the doctors were pleased with his stability. 

Later, in the car with Chase asleep over his arm rest, I replayed that moment in the room – the total lack of joy at seemingly good news.

Are we burned out on grace? Are we so weary that good things have ceased to feel like a gift? Is this what happens after over a decade in the fight?

Perhaps, and yet, dear ones, I don’t think it’s that simple. You see, yes, Chase’s heart tests were stable. In fact, he will receive a much-needed cardiology break as he will go several months before he needs to be rechecked – which is everything we could hope for! But after that piece of news came the reminder words: The good news we received can’t be ensured for any length of time because they just don’t know what comes next for Chase.

So despite the flutter and join on the ultrasound; despite the blood going where blood goes in the timing needed to reach the whole body… well, Chase’s heart is at risk now and always because, as the team reminded us: Chase himself is high risk. 

Stable, but don’t forget: high risk; no future stability guaranteed. 

Sitting with those words and their reality and various possibilities feels like watching a beautiful sunny sky to the east even as you feel a dark storm rolling up behind you from the west. You know what I’m talking about, friends? It’s the kind of storm you feel on the skin of your back even as the sun is warm on your face. …and all you can do is wait for it to hit you.

So where do we go from here?

The reality is that we can’t sit with the high risk words at the front of our brains and hearts every day, or we’d never resurface. We would truly and completely burn out. But the heaviness is a very real component of every appointment and I believe it’s because we’re reminded of everything that we wish never happened…everything we wish never existed in our stories. What do I mean by that? Let me share this beautiful quote from author Emily A Jensen, because it’s perfect and she gets it just right:

“Even being at the doctor is a reminder that something isn’t ‘as it should be’ and that can feel like a heavy blanket on our hearts”. 

So for a moment, we just let the high risk reality sink in. As Jensen puts it so well, we sit with the ‘heavy blanket on our hearts‘. We let ourselves feel the grief of the ‘isn’t as it should be’, because, dear ones, I truly believe mourning is an integral part of the life process.

We were not created for this brokenness.

And some days, the overall brokenness feels bigger than the good test results. So we weep. And that’s okay – in fact, I believe it’s downright good for the soul. But after the tears, we looked up again, and we remind ourselves that every day is a purposeful gift, and also that nobody has guaranteed stability stamped over their future on this earth. Stability was never promised. And that’s okay because better things await us.

Remember that the end of the story will be good, so if there are tears in your eyes…tears in my eyes… if we feel the weight of the brokenness and wish it wasn’t so… well, then we must not be at the final chapter just yet, dear ones. 

Pressing on… 

Moment by moment. 

Of Orange Shirts, Golf, And Kids’ Stories…

Twelve kids with their stories (both patients and some siblings too – because wow, the stories these siblings could tell)…

One day…

Two golf courses…

And hundreds of generous hearts…

All the numbers… all leading to the kind that take your breath away: like, just over $1.5 MILLION raised for Ann & Robert H. Lurie Children’s Hospital of Chicago.

It was such a heart-filling moment to be part of this event and it was also such a well-placed reminder in our weariness that there is always hope for better days ahead.

–MbM–

twelve children in orange shirts with the golf course in the background

All our love and gratitude to Kevin Butler, the Ace Hardware Foundation, Children’s Miracle Network Hospitals, and all the many amazing souls who made this happen.

Of Special Things…

Dear Ones,

After completing more tests and meeting with a cardiology team, we learned today that Chase’s heart function is decreasing. 

At this time, it’s unclear how quickly this decrease is occurring, but today confirmed that the ejection fraction of the left ventricle is noticeably lower than his last (and normal) echocardiogram done a little over a year ago.

After a lot of serious and big words, we asked outright if Chase was in heart failure, and found the answer encouraging to our own hurting hearts:The actual failing comes when the heart can no longer support the proper function of the body, and right now, despite its decreased function, Chase’s heart is still supporting his body. Holding on to this very, very closely tonight.

Right now, Chase is wearing a heart monitor and more tests and labs were done today. Over the next weeks, there will be still more tests and meetings, and we will do all of this again in two months to try and get a better picture of how all of this is unfolding. 

As we struggle to process something that is both awful and not surprising, we are so thankful that heart failure is in no way imminent at this moment…and yet we are deeply grieved that his heart is struggling at all. 

On the way home, I was trying to explain the outcome of today’s meetings to Chase in a way he could understand – how this is serious, but for now, he’s also doing so well, and he asked me “Why didn’t you just let me die of the cancer, Mom? Why did you let me have all the treatments if they were just going to hurt my heart?” … and while I took a moment to catch my breath and pick up the pieces (he packs a punch with his questions some days, our Chase boy…), he interrupted the silence before I could speak with this: “Was it because God had a good plan for me? …because I had to do special things?” …and then, more strong, more convinced: “I have special things to do in this life.”

I couldn’t have said it better myself, sweet boy. 

Moment by moment. 

 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

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