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. 🙂 ]
Do you ever find yourself wanting to sit back and laugh at your life?
Not a hilarious sitcom laugh, but a “Oh my goodness gracious stars! I cannot even believe we survived the last week!” type of laugh. The incredulous kind. Because raising kids is a crazy business and raising a neuro kid is crazy on steroids (and that can be taken, at times, in the most literal sense).
And what I’m working up to tell you is that Chase’s second eye surgery is tomorrow. You know, because, there’s nothing else really going on this week… HA.
It’s like he could just feel that it is a crazy season. And whether it was his back-to-back surgeries, the general loss of control, all the eye drops and pain… or possibly the name “Lucas” written in blue marker on his arm that he won’t let anyone wash off… whatever it was and quite possibly “all of the above”; Chase went a little off the reservation. Almost every single conversation has been a you-and-what-army authority struggle, he banshee-screams almost as much as he talks these days, and last week, he ran away from home twice and I found him sitting in a neighbor’s tree house, hissing and spitting about eye drops and having to obey and how terrible and mean we were for asking him to help clean up the toys. With his little body sitting rigid and angry right next to the giant, red “no trespassing” sign tacked to the tree house that his cloudy eyes and mind couldn’t read, and my palms sweating for fear that someone would see us and think I was the worst parent in the world, I had little choice but to embark on a round of oratorial genius (read also: sweet talk) and my best hostage negotiation skills, because, you know, it’s Chase. HA.
He’s missed the bus and he’s thrown fits and if I’m being totally honest and slightly comical, an awful lot of the last few weeks has reminded me of this…
Calvin and Hobbes, credit: Bill Watterson. (wikia)
And I share this because today, in the shadow of the second surgery, I need to remember that life hasn’t been pretty, but… we’ve survived. And Chase came safely out of the tree house, and there was even one morning when I could tell he wanted to run away from the approaching morning bus , but something clicked and he attack-hugged me with all his emotional energy and screamed in my ear “Mom!! I’m turning it around!! I’m going to do this!!” And though my neck hurt from his bony little arms, my heart was fit to burst with love and joy. Because sometimes the tiniest moments are huge victories.
Isn’t this just life sometimes? It can be an outraged stand-off, hostage negotiating “I so don’t want to do this” thing. And sometimes it’s just straight up “Please God, not this again…” exhaustion. And other times, something clicks and you get the briefest moment to breathe and rejoice in the total chaos and pain.
So we come to the day before another surgery and I guess I pour out all these disjointed little thoughts because it’s a ways of being raw and honest about life with a neurologically-challenged child. I hope it encourages you that you aren’t alone in whatever crazy “no trespassing”, you-and-what-army struggle you face today.
And Chase, he’s in his hyper pre-surgery zone now. He’s looking forward to a few days off school, some post-op popsicles, maybe being able to see better, and he’s already got “10,000 Reasons” ready to go on the iPad.
This is how we roll…
Moment by moment.
Whatever may pass and whatever lies before me, let me be singing when the evening comes… -Matt Redman, 10,000 Reasons
As he stood before me, he nodded somewhat unwillingly. “Okay, fine. Just one picture…”
Chase was going to “his hospital”, and he was going as a pirate. Because nothing says “this is who I am” like a pirate costume. Due to a slight cold, I would not be joining them on the oncology floor that day and so it was extra special because it was “time for just Chase and Daddy” – the very best.
Occasionally, I drop hints in my writing about Chase’s aggression and I have trouble doing much more than that for several reasons. I think mostly because there is rarely any redemption or beauty that would benefit you from reading about it in greater detail. It is sad and ugly and Chase is deeply ashamed of it. Whenever we talk about what happened during his angry moments, he dissolves into genuine tears, promising never ever to do it again.
And so, there has become this other quiet side to our lives that in some way seems less real because I don’t write or talk about it the same as I do other facets, and yet, it is extremely real and taxing in our home and on our family.
Over the years, Bob and I have experienced shock and judgement on the occasions when Chase’s struggle rears it’s head in public. There are comments and suggestions, and the response that always breaks me a little: tears and the quietly whispered aside – “I don’t know what to say but I’ll pray”. I think I’d say that same thing to me if I were seeing it from the outside for the first time too.
And over the years, as people have witnessed the struggle in hospital and out, we’ve been told that we as parents were overindulgent and we must be spoiling him, that Chase needed boundaries, that he needed more control over life choices, that we were giving him too many choices, that we weren’t treating him normally, that we were treating him too normally, that the anger was his reaction to the out-of-control-ness of life in cancer treatment, that it might be the anti seizure medication he takes every day, that it stemmed from anxiety, that we needed to change his diet, that we needed to change his supplements, that we needed to change his environment, that it could be circumstantial, and various other things.
One of the hard, out of control moments
We’ve thought many times about getting help for him, but weren’t even sure what “help” should look like or who should provide it. We were often told that he was too young and his brain was still developing too much for anything to be of assistance, and were even told at one point that some specialists had no paradigm for a child who’d been through the extreme brain and emotional trauma that Chase had experienced. It was as if everybody knew on some level that it was happening, but nobody knew how to deal with it or what was at it’s root. A very isolating feeling.
Hearing that it was something we were doing was especially difficult. In the first week that Chase was diagnosed, Bob and I had determined that one of the very best gifts that we could give him was the gift of normal. His life had become extraordinary and we desired to keep that out of his way as much as we could, and so, we instituted loving boundaries in and around the chemo and treatment. How do you give a “time out” to a child whose life is a giant hospital bed punishment? You can’t… but maybe if a toy got thrown in anger, then the toy went into time out for a few minutes. Small things like that – the things that made him like his brothers and sister, like the other kids outside the hospital walls. But it was a constantly changing situation in which we were (and still are) always having to weigh out what’s chemo damage, what’s tumor damage, and what’s Chase. It was during this early season that I found the phrase I love so well: “There are only so many hills you can die on.” But despite our efforts, the rages continued unchecked. We felt like we were doing everything good parents were supposed to do. How was this our fault?
We plunged forward and fought these fights ever week and sometimes every day, and yet, we’ve felt largely unheard. Not because anybody’s ignoring us, but because I truly believe that the pediatric cancer survivor field is still significantly unfolding in this area. Think about it: Chase’s cancer has only been defined by name for about twenty years and it’s only been about seven since his treatment began as a clinical trial, changing statistics from completely terminal to marginally terminal, and suddenly, Chase’s generation of survivors are living long enough to really see what happens after the dust settles. Some days, our lives feels like the cancer equivalent of the old Oregon Trail – where we just circle up the wagons and try to survive.
Bob and I often liken Chase and his treatment to a house fire. When he was rushed in with his large mass, he was a house consumed. The teams of doctors were almost like teams of fire fighters, working collectively to extinguish the deadly blaze on all levels. You do what you have to do to save. And then we were done and thankful… But, who helps rebuild the house? You can’t expect the firefighters to do that for you.
Chase works with a occupational therapist during chemotherapy [photo credit: Cameron Dantley]
This is ultimately what lead to Chase going to the hospital as a pirate this cold winter morning – we were on a search for builders – master builders. (Sorry, this is what happens when you’ve watched The Lego Movie a couple hundred times with your kids) It was time to work at rebuilding and Chase’s primary team of doctors had recommended that he was now old enough for a neuropsychology evaluation. We were cautiously optimistic, having been warned that it may not explain his aggression, but would definitely show some of his strengths, weaknesses, and how he learned. But we could still hope. Maybe there would be something – anything – that could provide us with a clue as to how we could help him.
And so it began, hours of testing, piles of paperwork, and then a two hour meeting for which I was conferenced in. And Chase sat in the back of the doctor’s office and over the speaker on Bob’s phone, I could hear Matt Redman singing “10,000 Reasons” from the iPad. Some things never change. But what we learned in the meeting was both life changing and life amazing.
I marvel how so many cancer parents know exactly where their child’s tumor was located in the brain. I am not one of those parents. I asked some other crazy and weird stuff at the time of his diagnosis, but I never asked exactly where the tumor was located. At 6cm with midline shift and tumor cell metastasis, it seemed to be everywhere. Which is why it stopped me dead in my tracks to realize for the first time in three years that Chase’s tumor decimated his language center. Did you hear that? Chase shouldn’t be able to talk. I need to say that again because I want it to really sink in. Chase shouldn’t be able to talk. Those of you who have met Chase know the truth, and I’d like to think that through this blog, even those of you who haven’t met Chase know the truth. Chase talks. Oh my word, does he talk! And well, too. So take just a moment and breathe in this insane miracle of a brain that, freshly cut and traumatized, made the decision to move knowledge to a safer area, and compensating for itself, retained power of speech even after hours of being open on an operating table. God is good.
But the damage and the compensation and the radiation all carried a price and it had to come from somewhere. In this meeting, we found out that it had been taken out of a few areas, including Chase’s executive functions – his emotional regulation.
What followed were long and breath-taking explanations in which instance upon encounter began to click into focus and understanding for us, and several times, I was tempted to burst into tears on the conferenced call just because the meeting was the most incredible revelation.
There are only so many times you can be told that you’re doing something wrong as a parent before you begin to believe it, and this meeting was the first time in a very long time that it was acknowledged and known beyond a shadow of a doubt that Chase’s aggression isn’t due to something we’re doing or not doing. There is damage, it is real, and we learned that there might actually be ways to heal, or at the very least, help.
There is not a magic cure. The process of working with a traumatized brain like Chase’s is a life-long one. There will be more therapies, more meetings, and possibly even medication to help retrain and replace some of what has been lost. And this will change and grow as Chase changes and grows.
So why do I share all of this? First, because if someone had told me three years ago that survival would be this complicated, I wouldn’t have believed them. And there are a lot of struggling survivors around almost all of us, so look to them with understanding and grace. Second, neurological issues are often simple in their exhibited symptoms yet mind-blowing in their actual complexity. So, the next time you’re in a store and you watch a mom deal with a screaming, wailing, kicking, on-the-floor child, know in your own heart and mind that it could indeed be an issue of boundaries and you might do something different if it were your child…or it could be that her child’s shirt hides multiple port scars and his hat covers a giant resection scar and that mama is dying just a tiny bit inside because she doesn’t know why he’s on the ground, what made the anger so great over something so small. And as you watch her, know that she’s been to places that broke her and she’s being broken once again in the aisles of a store and she wishes for just a second that things were different.
We are so deeply thankful because, three years ago, we didn’t even know if Chase would live let alone function, but we are weary parents, and the bald pirate has a long road of work ahead. So we rely on neurological sciences, survivor breakthroughs, and prayer – knowing that our seemingly accidental stumbling through it all is part of a good and hope-filled master plan. And we begin yet another facet of this life . . . moment by moment.
“…More than 95% of survivors will have a chronic health problem and 80% will have severe or life-threatening conditions.” – St. Baldrick’s Foundation
“Wait here”, the manager said, and we leaned against the wall, all six of us, like a giant line-up. I turned to Chase and whispered: “Are you excited to meet Matt Redman?” and he nodded and grinned as we leaned against the wall in the wait.
I suppose we expected fanfare, or a crowd, or something to herald this amazing artist – but suddenly, humbly and quietly (I didn’t even from which direction he came), he was standing in front of us and there were no handshakes – only hugs. He said he’d heard a lot about us and then he moved down the line of us and greeted each one, learning names and personal details. He met Karsten’s stuffed dog, talked with Darcy about her loom bracelets and their colors, and got on his knees in front of Chase and Aidan and asked them if Spiderman and Batman were in a competition, who would win?
And the craziest, most amazing part of it all? We got to stand in front of Matt Redman, look him in the eye, and try and put into words what the song 10,000 Reasons means to us….
How it underscores every car ride to the hospital…
How it’s floated out of most pre-procedure rooms…
How most of the hematology and oncology staff have been shown the music video at one time or other…
How it was the last thing Chase heard every day as he whispered “I’m so brave” and slipped into unconsciousness on the radiation days…
How every music therapist in the hospital downloaded the chords because they knew if they went to Chase’s room, it’d be the song he’d want to hear…
How it wrapped us up as we’d sit, high about the lake, day after day in the dark cancer days when the fevers wouldn’t break and the cancer cells wouldn’t leave…
Oh how we failed! There are not having enough words, enough good words to put into a few sentences what three years of this song as a soundtrack to our lives has meant. How precious it is to us, and how precious Matt Redman is to us because of it. There have been times and seasons when our hearts were broken and we could not call out, and the only thing that came from us to God were Matt’s words, Matt’s voice in this song as we had none left ourselves. This song has been one of the greatest gifts — until last night when we got the opportunity to try and find the words to tell him of it’s impact.
And how I wish you all could have been with us and watched as Chase sang along to so many of the songs, raised his arms in worship, clapped and cheered, even danced a little. And at the end of the night, before the closing song, the room got quiet as Matt spoke and he told them all about how he’d just met a family and the kids were all “firecrackers” (I mean, did he get us or what?) and that one of the sons had a brain tumor and then, Matt Redman told the room a minute of our story and Chase’s love of the song because – as he said – we were there to worship, but the church is always there to bear each other’s burdens, and we are the church, and as I sat in the hundreds of people, with Chase on my lap, Matt Redman invited the church to bear Chase’s journey with us, as a picture of Chase went up on all the screens, and Chase gasped and exclaimed “That’s me!”. Matt dedicated the song to the Lord, but said they’d sing it with Chase that night, and so we all stood together in this great room with hundreds around us and cried as we sang every word by heart – the way God put things together blew me away yet again.
And on that day when my strength is failing, The end draws near and my time has come, Still my soul will sing Your praise unending… Ten thousand years, and then forevermore.
And all the way home, late into the night, Chase chatted on about “my friend Mr. Matt” and how he loved him and missed him and wanted to give him another hug “…because he sang my song, Mom! He sang my song!”
We are so thankful for this once-in-a-lifetime experience of worship and fellowship…
…moment by moment.
*For more on the ministry and music of Matt Redman, please visit his website here.*
