74 Days And A Really Special Room

Somehow, 74 days have passed since I last wrote here…

There have been so many things I’d like to share with you, but I’ve let the words get swept into life business. Each weekend, I’d think “This next week, I’ll start again…” and each week would slip by while I thought of this site like a long lost friend I’ve been meaning to call.

To start with, I want to share with you how we moved out of our house for a few days to allow the Ace Hardware Foundation, Children’s Miracle Network Hospitals, and Ann & Robert H. Lurie Children’s Hospital of Chicago to move in…and remodel our family room.

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Chase deals with moving things out of the living space…

Change of any kind is especially challenging for a child like Chase, but he weathered it nicely and wow, the look on his face when he saw the re-made room… WORTH IT.

 

 

 

 

 

 

We are so blessed!

Enjoy!

~MbM~

Our most humble thanks to Lou Manfredini of HouseSmarts TV, design ninja Nathan Fischer, and the Buikema’s Ace Hardware employees who put together this amazing gift.

A Hopeful Surrender

Monday.

This day that brings a new start; a new week. Why does it betray me on the regular?

The weekends are full – sometimes precious, sometimes hurt-filled and disappointing, but always tiring. And then here it is a new morning and I feel like I’m starting a fire against damp, weak wood. I’m out before I’ve ever started. I don’t even have the energy to even fake it and somehow, the hours leading up to 9:00am are chalked-up full of the classic one-two punch – sometimes literally.

One child has a cold, drama, and undone homework.

One is having trouble breathing and can’t find inhaler, glasses, or gym shoes (which turn out to be wet and muddy when found).

And one has a headache which leads to a vicious unraveling – a spewing of anger and frustration on everyone in the house.

Between thinking about a healthy breakfast, trying to care about lunches, drying shoes, finding glasses, and hostage-negotiating the bald headache victim, I can’t find my own breath; my own pace. I can’t even hear myself think.

These hours are full of reaction, not planned pro-action and I feel my senses filling up with overwhelm.

Why me? Why now? Why is it always this way? What am I doing wrong that the wheels not only fall of the wagon, but seem to be forever lost? 

How do I fan a flame for life and diligence when the day feels ruined before it’s hardly started?

I find myself searching like the drowning. Where is the salvation that will allow my head to stay up and breath through just one more day. One more moment…

I heard it yesterday on the radio and my mind flashes back in a rare moment of clarity:

“The Word of the Lord endures forever.”

I have nothing. He is everything. 

My moments will pass like breath. (why did I think they’d do anything else?) He is forever.

I don’t have to fight for strength because in my weakness, He is strong.

So, as I stand in the middle of a day hardly begun and already shattered, I find hope and strength – not in the picking up of the stressful pieces, but rather in the act of LAYING THEM DOWN.

Choosing a hopeful surrender…

Moment by moment.

The grass withers and the flowers fall,
    but the word of our God endures forever.

Isaiah 40:8, NIV

Stock photo from Pexels: courtesy of unsplash . com
Stock photo from Pexels: courtesy of unsplash . com

Keep Running…

He contemplates a word he will never understand
He contemplates a word he will never understand

Sunday, 31 July, 2016

Just before the sun rose on this day four long and quick years ago, the last unknown action of a growing brain tumor was finally known as my boy seized in the wooden crib of his baby years under the waning moon.

We should not have had even six months, and yet somehow, we’ve had four years.

They have been long and full of shadows and anger, but also precious with more joys than we deserve.

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And as the shadows lengthen into longer life than we’d ever have dreamed, and we persist in this atypical life and it’s challenges, the words of Matt Papa have been close to my heart.

Lord I’m tired…

So tired from traveling

This straight and narrow is so much harder than I thought.

And on this path I’ve met both doubt and pain and I’ve heard their voices say ‘Yeah, you’ve given all you got.’

But there’s a cloud of witnesses – the ones who’ve run this race – and even louder than my fears, they’re crying: ‘Warrior, lift your face!

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And keep running, keep running, don’t lose heart, and don’t you give up now.

Don’t turn around.

You’ve got to find a way somehow to keep reaching; keep fighting.

The pain cannot compare to the reward that will be yours; that waits in store for those who just keep running.’

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Don’t turn aside…

No compromise…

Just lift your eyes to the glory that’s coming.

If you’re like me, you feel like you can’t go on, you’ll never see the dawn and you’re just about to break.

But don’t stop now.

Know that every sacrifice will all be worth the price when you finally see His face…

Just keep running…

Moment by moment.

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Breaking Down The MRI Results – VIDEO

We’ve now heard from all of Chase’s teams.

Here’s a little update with a breakdown of what happened with the MRI and what comes next.

And because I love you, I recorded a video instead of writing a blog. But don’t worry, I won’t leave my day job. xo

#MomentByMoment #ChaseAwayCancer

There is a place between the good and the bad. And for now, I think it’s called survival.

Writing has become a dreaded task as I both wait for the final word from all the teams and try and process what happened today.

There is more growth.

But Chase is stable.

But there is more growth.

I have no place in my head or heart to understand all the negative words like “growth”, “larger”, and “most likely wait for surgery until they’re pushing on the brain” and then mesh them with positive words like “stable” and “overall, it looks pretty good”.

I feel the need to fight, but I don’t know what to fight because Chase has no symptoms and seems fine – well, okay, “fine” – even though there is more growth. And nobody seems to be completely sure what’s unfolding right now. 

So, we wait for the final word from all the teams, which will most likely and ironically be to keep waiting and do this again in a few more months.

Remember last night when I was talking about the brokenness being a chance and a choice to walk with a loving Christ? Somehow, in this minute, I’m wanting to carve out a third path that’s neither self-condemnation, nor total reliance, but rather and simply: deep weariness. And perhaps path is a misnomer, for it would go nowhere, so maybe it’s best to refer to it as a pit. But that will bring visions of Princess Bride’s “Pit of Despair” and then I can’t help but smile.  Perhaps the worst torture is not a water torture after all; but rather a regular scan schedule with inconclusive answers that slowly wipe figurative years off our lives…

Wow. What a terrible spiral this self-pity becomes. I pretty much and inadvertently just compared our teams to the six-fingered man. But, oh dear ones, tonight, in the rawness of these new results and words, I’m weary.

Tomorrow, I’ll pick up the pieces and move on in the moment by moment, but for now, tonight, I’m sitting here just trying to process what we heard and filter it through what life should look like, what we should look like, and who our God is to us when things don’t look the way we desire.

I absolutely don’t want to leave you with what’s become a bizarre moment of tying together Princess Bride and and the Christian faith, so please, end the night with a smile as I started the morning with one…

Today was quite possibly Chase’s smoothest MRI to date.

He was an absolute pro in the pre-op (even with the needle!) despite his fear, and even though his behavior has gone down with the sun, he woke out of sedation in the best, funniest mood I’ve ever seen. He made airplane noises, had absolutely ZERO short term memory (which lead to intense sessions of repeat questions), and kept telling the post-op nurse that Bob and I were in college and that she (the nurse) was very young and that they would be best friends “for ever and ever and ever and ever and ever…” (He may or may not have been under the influence of Teddy Grahams…)

I can’t help smiling just thinking about it and so, once again, we live the truth that weeping is for a season, but joy comes in the morning…or, in five minutes with a bag of Teddy Grahams attached.  

So, I’ll sit in the hole of weariness, I’ll laugh at the antics of love and life, and somehow, we will all move on in untiring Strength.

Moment by moment.

Chase exits post-op, too wobbly to walk, but sharp enough to work the nurses for extra stickers. <3
Chase exits post-op, too wobbly to walk, but sharp enough to work the nurses for extra stickers. <3