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.
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!
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.’
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…
These days, it feels like we are waking up to bad and worse news every day in which coups and killings mix with hate and stealing. At times, even our words aren’t our own and too many are out to take advantage, so today, this week, I want to share something amazing with you.
These pictures represent a whole day of GOOD.
Nope, more than that, actually: a day of WONDERFUL.
It was a day last week when people came together around a common cause and lovingly, sacrificially sought to make a difference in the lives around them.
People were stepping out of their comfort zones left and right and you know what was left on the course?
No matter what’s in your newspaper, your in-box, or your social media feed today, there are a lot of amazing people out there quietly doing wonderful things all day, every day.
-MbM-
Chase with his new special friend and encourager, former Chicago Bears (and super bowl champion!) place kicker, Kevin Butler – you guys, this was a special connection for Chase
With Robbie Gould as we kick off the pairings party
Bob helps Chase sign his Lurie trading cards
Chase tries to jump for a “high five” from former Chicago Bears offensive lineman, Roberto Garza
Former Chicago Bulls championship center, Bill Wennington looks up to Chase’s friend, superstar Matthew
Chase has to get on Bob’s shoulders to greet former Chicago Bears offensive tackle, James “Big Cat” Williams
Chase being Chase with The Ace Foundation’s Chris Doucet
Spending some time with former White Sox outfielder, Mike Huff
Darcy and Harlow (Lurie patient and cancer survivor) show off their many autographs while representing the hospital
Chase gets lessons in using his new selfie stick from NFL quarterback Matt Blanchard
Chase and Harlow bum a ride on the course with their new best friend, Robbie
My favorite picture ever – Robbie Gould with some of the Lurie kids and their siblings. The love and joy in this picture is amazing!
Amazing Women Alert! Lurie’s CMN Director, Morgan Shea poses with Darcy and the Ace Foundation’s Chris Doucet.
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 “mostlikelywait 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
The turmoil begins sometimes days and sometimes only hours before…
“If God is my joy, why does my heart hurt so?”
“If it is well with my soul, why can I not focus on my daily tasks?”
“If God is my light, why is there a foggy cloud over my heart and mind?
“What if…?”
“We’ve been having such a wonderful summer…it’s unprecedented, really. What if God is preparing us for something bad…”
“Seriously, what if…?”
“…”
The crazy, terminal thoughts roll and pitch, waking and sleeping all because an umbilical cord once attached his tiny body to mine and I still remember the smell of his infant head. It kicks in as surely as I need to eat or sleep and seemingly as biologically too. It’s as if my heart strings are tied to a scan calendar and it hurts.
What do you do with thoughts that are highly possible, but aren’t yet true.
How do you make your peace with the hard things while they loom like a threat on the horizon?
Even though it’s very unlikely that tomorrow’s scans will yield anything other than stable results, it’s equally unlikely that I will ever stop waiting for that other shoe to drop like it’s 2012 all over again. The peace comes a little every four months, and then as the days and hours draw closer, once again, I realize that my resources were predictably finite and I’m back in the moment of re-learning every lesson I thought I already knew.
Typical. These reminder of pitfalls and brokenness. They seem not to ever leave me, but they can lead me one of two ways: I can veer into the path of self-condemnation, or I can choose to walk the path of my own weaknesses with the help of a Strength far greater than my own.
So tonight, as I grow weary from rounding the corner on the fourth consecutive year of MRIs, and as my sweet bald boy grows increasingly quiet (a sign of his preoccupation) and dons his favorite Spider-Man costume in preparation for fighting the fear, I choose to once again see the brokenness for the road marker that it is: pointing me to the One who never grows weary in our lovingly hand-crafted journey.
Have I said all these words before? I probably have. But tonight, I needed to write them out again because in some ways, this small internet space is like the doorposts of my house. I need to paint it with the truth of life again and again because those truths are all that covers me and my family in the hard days and shadows.
And this boy, when I asked him if he wanted me to write anything special to you on the eve of his test, well, he just told me this:
“Tell them to pray for me, Mom. Tell them to pray for me and nothing else. I’ll just be brave. It’ll be okay.”
Oh Jesus, how we need you in the moment by moment.
