Answer the most heart-breaking question of all, because it somehow always overflows on a hospital day: what if I get the cancer again?
Chase uses his “name stamp” (used for signing books) to stamp Dr. Lulla’s hand
How do you explain that hours-long, intense testing has nothing to do with cancer? …yet has everything to do with cancer? It all feels the same when you’re a little kid. The same rituals, pains and fears; never mind that there may or may not be atypical cells attacking. It all feels cancerous and scary when you’re seven.
But tomorrow morning isn’t about what’s happening. It’s about what’s not happening. Chase’s body doesn’t want to grow on it’s own anymore, so for the first time in a long time, he’ll be admitted to the day hospital and they’ll attach needles to inject medicine and more needles to take blood. And then they’ll do both over and over by the hour until they have enough to prove that cancer damages. Because the sad truth is that there’s no funding if it can’t be proved on paper, submitted, filed, bottom-lined, than our reality is just that: ours alone.*
Talking to new friends about hope
There is no self-pity in that truth, I promise. There’s shock and sadness; a deep desire to be known, but not pity. Not now, not today. Because I believe above all things that this tomorrow and all the days have a purpose we do not yet know and cannot yet appreciate fully. This test day tomorrow is just more gazing into the mirror and beholding an unclear, somewhat painful reflection.
We will breathe through the pain of damage and the desire for wholeness, but the heartache is so very real, and right now, Chase’s fear sits on the surface of, well, everything. He has struggled all week, including throwing off constraints where and when he can (like refusing to get on the school bus) — anything and everything to try and find control when he has so very little.
A dad and his boy
Will you pray for Chase tomorrow? We’d so appreciate it.
This coming Monday morning, we will stand outside the MRI machine and wait on our unconscious, brave boy once again.
There is no such thing as an unimportant scan for kids like Chase, but this one really is important and different from the others in a new way because, if, (yes, Lord, please…)… yes, if Chase’s results are stable, this month will hold his last round of appointments with his current neuro-oncology team. If he’s stable, he’ll be moved to a different clinic at Lurie with different doctors and staff, better and more equipped to deal in the living with cancer instead of the dying with cancer. Does one “move on” from cancer? Ha. But one can certainly get to another level in the game.
Having this bittersweet moment in sight feels like a tempting of fate. And the changes come and go with the days, weeks, and months, but the whisper is always there, stronger in the weeks preceding a scan – especially a big one: “It might come back. This might be it…” That moment I’ve tried a million times to imagine and prepare my heart around — even when I know I can’t. And the pre-MRI days hold a desperate struggle, but it’s hard to pinpoint the source of the black mood wrestling.
Is it fear?
Is it a renewed in-your-face realization that we are disgustingly powerless in this life?
Is it anger at staring down my own weaknesses and learned lessons over again?
The answer is probably yes, yes, and more yes.
But you know what else is, are, and ever will be yes? …yes and amen?
THE PROMISES OF GOD.
Don’t be afraid, for I am with you. Don’t be discouraged, for I am your God. I will strengthen you and help you. I will hold you up with my victorious right hand. Isaiah 41:10
And yes, the worst may prove true on the scan, but there is someTHING…someONE who proves MORE TRUE.
Every word of God proves true. He is a shield to all who come to him for protection. Proverbs 30:5
Bring it on.
Moment by moment.
Chase with his favorite hospital security officer, John
ENCOURAGEMENT: /noun/ the action of giving someone support, confidence, or hope.
Giving support to others not only requires mental and emotional energy, but also and often a shade of vulnerability. I have to open myself up to help someone else. And this aspect of living in community, well, it can get complicated when I’m heartsick and weary. How can I possibly care for someone else when I feel in shreds…when my family feels shredded and resourceless? I suppose I expect to care and serve others out of my own excess of peace or joy. So how do I give joy when I don’t feel it in my life…when there is seemingly no excess? And how on earth do I teach my kids joy in the atypical?
I worry for the other three all the time: how will Chase’s cancer diagnosis harm them? How has all of this defined them or broken them? …perhaps even in ways we can’t see or won’t know until they’re adults themselves? (2:00AM thoughts that push the ‘panic’ button)
Will they struggle with what to believe? …with who and how to love? …with their life purpose? And how many of these struggles will they be able to pinpoint the birth of in a sibling’s terminal illness, subsequent struggles, and the too-often mentally, emotionally, or physically absent parents who should have been at their sides.
I want to fix all of these things before I even confirm their brokenness. I want to pre-empt all the pain and cushion it. And I acknowledge in my heart and even as I see with my own eyes that it often isn’t the big moment kicking in the teeth of their precious hearts, but the little one. If L-O-V-E is truly T-I-M-E, then it really is a moment by moment fight for the good to win through all the pain and craziness.
And here’s what I’ve found: there is so much I can’t take away from them, but there are things I can give them – almost like tools to build or weapons to war. Because life may be atypical, but it can still be incredible – it may not always be “good”, but it can still be right.
“Share each other’s burdens, and in this way obey the law of Christ.” Galations 6:2 NLT
Share.
Obey.
We were created for this. Despite the vulnerability and pain, we survive as we share the ups and downs of life with each other.
What does this concept look like in a feet-on-the-ground, eyes-open-wide way ? And what does it especially look like when the burden is a life shadowed by complicated illness and the burden carriers are little children?
FaceTime in the hospital
Notice Others: A huge part of developing encouragers is fostering awareness of those around you. Go around the dinner table and have each person say something they like or appreciate about the person to their left. This makes us have to consciously consider the good in others, and as we see this, we often see their hard things to comfort too.
Seek To Relate: “Do to others as you would like them to do to you. (Luke 6:31 NLT) This goes one step deeper than just seeing the person next to you. Actually try and put yourself into someone else’s shoes. Try to feel what they feel. This can be complex and even offensive in painful moments, but painfully easy and wonderful in life’s joy moments. And perhaps, there will be a fantastic and interesting discussion as you tie what your kids know and feel to what someone else close to them might know and feel.
Be Authentic: There are few things that can’t be worked through by talking to each other honestly and openly. If we genuinely don’t know what to say, I believe it’s okay to express that inept or powerless feeling and talk it through. This is often the most vulnerable moment, but also the most rewarding for in opening my heart, I invite the other person to open their heart as well.
Celebrate Victories: Some victories will look like winning and others will be simply refusing to let the darkness, weariness, stress, or anger in. To feel the pull of pain, to deny it, and to choose joy or hope instead is a staggering victory and should be celebrated as such. (These moments aren’t always deep and nuanced. For some people in our family, this is as simple as forcing themselves out of bed the morning after a long day in the hospital.)
Just Stop: Sometimes I just have to stop and sit. Gather up my precious babies onto my lap, or under my arm, kiss their heads and tell them I love them. We cover ourselves with a blanket and just snuggle for a bit. Then, I breathe deep and say it aloud: “You guys, let’s just take a minute.” Because nothing tears at the heart and mind like constant, unabated stress and sometimes, miraculously, the petty fights and little hurts resolve themselves as we breathe deeply and remember love, not hate.
Just Go: Yes, sometimes we need to stop and breathe. However, other times, we need to get up and go. Hang the schedule and the clean house or the project that’s still not done… just go for a walk together, go to the park together. Or, even better, go check in on a neighbor, take popsicles to someone who just had surgery, take coffee to Daddy at work… These small things, especially the things that allow us to serve others are a constant, tangible reminder that we were not created to function in a void and that our personal pain, stress and hardships do not comprise the only story in the world. Breaking down the boundaries, meshing with others, reaching out – all of it – is like water on the tender growth of sensitivity.
Orchestra concert cheerleader
And dear ones, I hate writing list points because it feels like accomplishments checked off and won. The truth is: we are broken. We fail at these ALL the time, scratching each others’ eyes out with our words and our selfish hearts just as often as we hug and bind with joy. But I’m writing these things down all the same because I need to remember, and maybe, just maybe, you’ll find something encouraging here too. You are loved.
Moment by moment.
“All praise to God, the Father of our Lord Jesus Christ. God is our merciful Father and the source of all comfort.He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us.” 2 Corinthians 1:4
When David C. Cook sent me a copy of the book a few weeks ago, I was delighted to read this book not only because Chase’s story is featured (for real!!), but also because we have met and come to love Matt and his heart for worship and I couldn’t wait to dive into that same joy on a page. So, I mentally prepared myself to feel blessed and inspired by the stories of this light, 164-page read.
What I wasn’t prepared for was the complete challenge and theological depth that pervaded every single page. I expected this to be a learning experience through others stories – and it is that. But it is also full of gentle soul-preaching: the act of spinning these stories out into a greater understanding of the heart of God found in the Word. Each story thread from Matt’s own life and the lives of others is tied back into the bond of who we are in Christ and who Christ is to us — making these pages anything but “light reading”, and oh, so rich!
You guys, for lack of a better metaphor in this moment (I can’t think of brilliant things when I’m super excited – which I am – about this book!), this work is like a protein shake for your soul. It will replenish you in ways you didn’t even know you were hungry.
Too often, when I hear words like what Matt and Jonas wrote into the “10,000 Reasons” song, there’s a part of me that wants to say: “Well, that’s all very well and good to want to be singing when the evening comes..but I wonder how you’d feel if your life were ever really difficult. What would you write then?”
Gauntlet = thrown. Christ = proved again and again.
For, as this book will show you both in the life of Matt and in others around him, God is found to be enough and singing is possible in the evening not because hardship has never been experienced but rather because they’re in the middle of it! The worship is often sweeter in the suffering because our heart cry is not just wished upon the “some day” of Revelations 21, but is proved again and again in the now. He is our God and He is with us always.
I would highly encourage you to grab a copy of this book and make it a priority even in these last of the summer days. You will be refreshed and encouraged to press on –
Moment by moment.
Our scars are signs of God’s grace in our lives – signs that we’ve been through something and that we have made it to the other side. They remind us that we are not where we once were and that God has brought about a victory in our lives. Our wounds may have been dark, but the promise of God’s love has been tested and proved in our lives. When we look back, yes we see pain, but more than anything we see provision and protection, and the ways God has made us ‘fruitful in the land of our suffering’. -Redman, page 128-129
[You guys, I need you to know that Matt’s publisher sent me a copy of the book as a gift because Chase appears in one of the chapters. There was no official expectation or request for a review. This is just me being me. 🙂 ]
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…
