Category: Uncategorized

Of Needles And Being Known

There is a hand on my shoulder. “I am just going to give you a little something to help you feel more calm.” 

Slowly, I angle my head in its blue fibrous hair net up, just enough to see the anesthesiologist with his red surgical cap and mask behind me. “Please…” I say. “I don’t want to be dizzy afterwards.”

He grew up in Nebraska and is a Huskers fan. “It’ll be okay…” his voice is calm as another nurse holds my hand, stretching out my arm on a board to the side of the table, letting the cording on the IV run without tangles.

There are surgical lights like something from a space movie crowded over me and then a terrible wave of dizziness hits me.

“Ugh…I feel really dizzy.” I speak the obvious into my oxygen mask. 

“You do?” The doctor says from behind me.

“It’s okay…” says the nurse. “The dizziness will pass in a second. Just close your eyes.”

My brain begins to formulate the thought that I can’t stand this, that I can’t do this, even as I close my eyes… and remember no more for a long while.

This isn’t Chase’s experience. 

No, this time, it’s mine. Chase’s mom. And truly, it isn’t much of a story as stories go, but just recently (so recently that I’m still convalescing as I’m writing), I had to go through a very minor surgery for myself. But the small surgery isn’t the heart of the story – other than that I’ve never had one before. The heart of the story is about being known.

It started on the morning of my surgery, the appointment time wasn’t until quite late in the day and so I spent hour after hour, first cutting out all food, and then all liquid too, following the instructions ever so carefully. My mouth was dry even as my churning stomach wanted nothing so much as a call saying “We made a mistake – you don’t need to do this after all! Have a big cup of coffee to celebrate!” And as each hour went by, I felt the weight of the day settling around me like a cloud. How on earth does Chase do this…and so often too?

Meanwhile, Chase wasn’t worried for me. Chase was excited. He was honestly energized to almost a giddy level. He woke up and came running downstairs, jumping onto my bed with the words “Let’s see how you like it, Mom!”

When those words first passed his lips, I was shocked. I had been worried about him being scared, about his being triggered. I never expected him to be energized – even …happy?

Then, as he sat down, stroking my hand and giving me his “tips” for the day – how to breath when they start the IV, how the medicine will feel when it enters my body, what to think about when I felt scared…and of course, Matt Redman’s ‘10,000 Reasons’ full blast at least twice – then and only then did it hit me:

THIS was connection to Chase. 

THIS was being known to Chase.

He wasn’t on the bed with me at his side; telling him all would be well and holding his hand. No, I was on the bed and he was at my side, and for the first time in his young life someone else in his immediate family was going to understand a moment of what it was like to be him: to fear, to feel pain, to slip dizzy and unconscious into a dark place and not quite know what was next. 

He was giddy not for my hardship, but for our connection in it.

And dear ones, seeing this moment unfold knocked me over because I realized again how often I let life take its course and sometimes forget how incredibly precious the thread of connection is when we step into someone else’s fire for even a moment.

UNDERSTANDING is the binding where we can look into each others’ eyes and say “I KNOW”. And out of that moment can flow such healing joy even when not a single circumstance changes:

You are KNOWN!

You are UNDERSTOOD!

And dear ones, these words are a gift to us amongst ourselves. But even more beautifully, they are threaded and scarred forever into the heart of the One who loves us best: No matter how it feels, how it seems; God is not out of touch with our reality [Hebrews 4:14-16].

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 NLT

I hope you know this connection, dear ones, even as you are known. You are understood, and best of all, you are loved.

Moment by moment.

Steady On

The wind was just enough to throw the large snow flakes into a mesmerizing swirl as they fell, fluffy and quick, through the winter storm sky. When they fall like that, the headlights don’t cut far enough and even my depth perception changes. I watch the light on the dashboard flash orange, warning me of something I was already feeling beneath me: my car’s traction is slipping…

That’s what it’s like to drive in the winter storms. 

Have you ever been there? …tried it? I bet you know exactly what I’m talking about.

Traction is a concept that changes minute to minute and seemingly, the only way to hold on to it is to keep a pace that is so slow a snail could keep up with you, a pace that is half boredom and half terror as soon as you feel it all sort of slide out from under you, as you feel control ceded to something much bigger.

And it hit me in that moment when I couldn’t see and the warning light flashed on: snow driving is a lot like life-living in the wintery, hard moments. 

The way ahead is often obscure and some days it feels like there’s little between boredom and terror. You doubt the light will be enough to cut through it. Oh, and the storm that started it all, you know how it goes… the storm only ever seems to show up on that one day that you have someplace to be, something else to do, too much going on to think about slipping, sliding and black ice moments, right?

But with life, as with the storm moments, the only way out is to push through it, not like a battering ram, but slow – so slow. I want to get to my destination. In the storm moments, the speed that should be possible on the road and the speed that I can go are two very different things and oh, it’s almost laughable how even on a silly suburban road in the middle of January, it’s the “should” that knocks at the very door of my identity. 

But no, the only thing I can do is go ever so slowly forward and pray that the tires with their grooves – the very grooves that were carved into them when they were made – grab the road and hold it fast just as they are supposed to do. 

Do you see it like I did in that road moment, dear ones?

All the ways we move forward, there were things carved into the heart of us when we were made – before we were made, truly. And it is this that hold us to the road, that pulls us back when we slip, keeps us slow and true when the way ahead feels obscured, that keeps us from losing patience and grace when it feels like the very sky is falling around us.

So don’t chafe in the storm when the going is slow and frustrating. There’s more to the storm that you can see. And perhaps you were designed to hold steady – for this very day.

Moment by moment. 

You saw me before I was born. Every day of my life was recorded in your book. Every moment was laid out before a single day had passed.

Psalm 139:16

Peace and Joy

Chase with the vascular access team in pre-procedure

On Tuesday, Chase had his big scans. The wait for news has felt endlessly long this week, but the call came yesterday afternoon…

Dear ones… in an unprecedented move, Chase’s body appears to be healing itself from a significant iron overload, his liver looking better now on the MRI than it did two years ago. 

Chase and Dad in pre-procedure

We laughed on the phone, his nurse and I, because we both know Chase and the absolute rarity of a moment like this.

In addition, the growth near his kidney appears to be an enlarged lymph node – which is even more good news.

The radiology team did note that there seems to be a proliferation of swollen lymph nodes (and new lymph nodes since the last scan) in his abdomen. However, none of them show a mass or signs of being cancerous at this point.

As a mama who worries, I asked his oncology team about these new lymph nodes, the growing and enlarging pieces. I used words like ‘lymphedema‘ and ‘lymphoma‘ because it’s Chase and I think about these things for him.

But in the most perfect Advent moment, I was told this…: “Not now… We’ll check again when he has his brain/spine scan in the spring, and if there’s no change, we will know that our assessment now holds true.” 

Sometimes, the endless Chase waiting feels like a weight, but this particular time feels poignant and beautiful because in its own little way, our wait is a heart reflection of The Wait, this season… Advent: like mute Zechariah, like awestruck Mary, like a nation in silence and a world in pain, we wait for the things we hold close in wonder to prove true.

…so we wait with Chase once again – the same as usual, but not the same. And we celebrate these gifts of a scan where –miraculously – Chase’s body is doing something helpful for itself, and there are no immediate follow ups or treatment or next steps needed.

And we’ll know the rest in time, yes?

Merry Christmas, dear ones.

Moment by moment.

[The next appointment will be January 5th, 2022 to scan for thyroid cancer growth]

He’s 12 Today

Last night, I was reflecting on the start of Chase’s life. Perhaps some of you have seen this before, but this (above) is the first photo I have of Chase and with Chase. This picture never stops being amazing to me because he came so fast and was placed on my chest so fast with such a deep scream that I actually watched life flow into him, turning him pink.

Can you see it?

Can you see who he is today in this tiny scrap of human in my arms?

Another reason I never stop being amazed at this picture is because I had absolutely no idea what lay ahead of us and how many miracles lay in store for this sweet, unexpected life. I had no idea how much I’d cry… or laugh…

Did you know that Chase was born 12 months and 5 days after his older brother? To say he was a surprise to us would be an understatement, and yet, it underscores something I know with my whole heart… Chase was meant to be on this earth.

He followed fast on brother’s heals.

He came fast and screaming into the world.

He hasn’t stopped fighting since.

And this is one of his personal favorite pictures because I’m in a hospital bed with nurses and gloves and masks around me…and there was an IV in my hand. And so I reflected on these picture things last night, as I wrapped presents and prepared for now – this day.

Twelve… It’s so insane to me! I remember the day the doctors told us “Don’t think too far ahead… let’s just try and get him to age three.”

Isn’t life amazing? …and so are you! Yesterday alone, the day before alone, you raised over $7,000 in Chase’s “12 For 12″ fundraiser.

Dear ones, my heart is so full. These dollars will do so much good. Think about this: somewhere this day, a woman like me is holding her baby – like Chase – in her arms for the first time, having no idea how much she’s going to need Lurie Children’s and foundations like ARFF someday. And when she wakes up one day and realizes the need… we will have already been there – doing our best – because Chase turned 12.

Life is precious.

Moment by moment.

[To donate in celebration of Chase or to share with a friend, click THE LINK – thank you!]

12 For 12 – A Cause, A Celebration

ANNOUNCING…. “12 FOR 12” …!! [Chase’s birthday fundraiser]

Can you believe it? By all rights and data, our precious Chase should have never seen a 3rd year, let alone a 12th birthday! Yet, here we are and Chase still lives and breathes joy into our family and the world around him. And on December 12th – 12/12 – he will officially be 12. A golden birthday for a golden boy. He is a miracle and we are so thankful.

This year, Chase had a very special request for his birthday fundraiser (which is running an extra day – so the whole weekend!). He wanted the money equally divided between Ann & Robert H. Lurie Children’s Hospital of Chicago and the Anthony Rizzo Family Foundation – two of his absolute favorites.

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 $12 (or a multiple of 12…or more!) in honor of Chase’s 12 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!!**

photo: Margaret Henry Photography

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