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.
Dear Sons and Daughters with the Guns and the Hate,
Stop.
Please stop, I beg you.
I may never understand what it’s like to be you and it breaks my heart that I can’t ever fully enter into your personal journey through whatever you face: racism, injustice, marginalization; even murder. My only right to beg for a ceasefire comes from living with a different kind of pervasive threat – in which my child has a less than 20% chance of survival and less than 4% chance of the government ever acknowledging his right to that narrow margin of life.
I’ve stood alongside bald, gun-less fighters and weeping parents treated both justly and unjustly as they did everything possible to preserve life. And I’ve stood over hauntingly tiny coffins too.
There is very little I can do against the pervasive awful of cancer to preserve life for my baby, but there is so, so much you can do against the pervasive awful of hate-cancer spreading to someone else’s baby.
Did you hear me? You have the amazing ability to give life, not take it!
I’m not suggesting you lay down the fight. In fact, never stop fighting for what’s right and just. Just stop with the guns and the hate. Please, find another way – for the sake of the mothers, wives, and even children with empty arms, for the sake of better, greater, and more: STOP HURTING EACH OTHER.
I truly believe with all my heart that you were made for far better things than this.
[Credit: Iron Gate Motor Condos]I’m not a car person.
Yes, I have had a favorite car in my life, I can recognize an expensive one when I see it, and I did the popular momentary cringe over our first mini van before wholeheartedly embracing the extra space — but I’m not a car person.
Until last week, that is…
For last week I stood on a red carpet and watched line after line of shiny, beautiful, cars I could not identify pull to a stop and load children with cancer into their perfect interiors, revving their engines and taking off with their tiny, precious cargo screaming joyfully – many of whom barely cleared the windowsills to see their route.
[Credit: Iron Gate Motor Condos]And then the organizers were on their radios, talking excitedly that “they were about a minute out” as a line of nearly 30 beautiful cars snaked up the long drive, all with “Ultimate Road Rally” magnets affixed to their doors and many with “We Rally for Sami” on their windshields – an homage to a dear brother, violently gone far too soon.
[Credit: Iron Gate Motor Condos]The rally drivers then joined the other drivers, each taking one child into the passenger seat and the child, eagerly clutching a rally map, helped the drivers earn more points before returning to the drop off. It’s hard to describe the beauty of drivers and organizers setting aside walking devices, helping parents adjust children out of wheelchairs, and then as the children exited the cars, their smiles were huge, their arms were laden with gifts, and I saw softness, joy, and even tears in the eyes of these tough drivers with their breath-taking cars. And how I wish you could see what I saw.
[Credit: Iron Gate Motor Condos]But perhaps my favorite memory of that day was the two brothers in the shiny black…I want to say a Mustang, but like I told you, I’m not a car person…can we just leave it that it was shiny and black and absolutely gorgeous?... Anyway, the two brothers, took two of my darling boy brothers out for a spin, as as they returned, I could see the tops of Aid and Chase’s heads and hear their laughter and joy. No doors opened to exit the boys, but one of their escorts simply stuck his head out the window with a giant grin and said; “They want to go again.” And with that, the car leapt forward with a roar out of the drive and I could hear Aidan laughing and Chase screaming “Go faster! I feel like I’m going to throw up! This is AWESOME!!”
And all those drivers? Well, besides giving my kids one of the best afternoons of their entire lives, they raised $30,000 for Cal’s Angels.
And me? Well, I’ll never see those beautiful cars the same way again. That day changed me a little. Now, even though I still can’t identify what I’m looking at on the outside, I see so much heart on the inside and it blesses me.
“I know Sami would have wanted us to do something special. We couldn’t save his life, but there were lots of kids’ and their families’ lives that we touched.” – Omar Salaymeh, Marketing Consultant at Chicago Motor Cars, Founder of Ultimate Road Rally, and Sami’s dear brother
**With gratitude to Cal’s Angels, Omar Salaymeh, Ultimate Road Rally, Iron Gate Motor Condos, and all the amazing drivers and workers who made this wonderful day possible**