In this outside-the-box life, the brain tumor cut deep and far into the language center. Though Chase’s brain bravely held it’s ground and kept it’s words, sometimes, he experiences what appear to be gigantic non sequiturs. A word or phrase comes into his mind and he wants to…and even needs to say it over and over, but it’s not always apparent why.
In the days following the initial surgery trauma, it was most pronounced as he’d lean his two-year-old little body close to me and gleefully warble “Congratulations!” again and again – like a greeting and a benediction. Congratulations, indeed, my sweet boy…you survived major brain surgery.
But this new year, this new season, as he sits at the table munching turkey bacon -his always favorite- in his winter jacket, waiting for the bus to arrive; his brain comes up with the best yet…
“Mom,” he sighs; “You aren’t getting any younger.”
I sit back and laugh incredulously. “Chase! Do you even know what that means?”
The rest of the turkey bacon stuffed into a cheek, he chews contentedly and thinks aloud. “No. Not really. But I think it probably means that you’re getting younger. But also, not really.” And then he reaches over and pats my arm, repeating “Mom, you’re not getting any younger, but it’s okay. I love you.”
And there it is. Love helps us make the most of our time.
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
The traumatized brain is an outside-the-box thing.
The paper he brought home from school was too small and structured a practice space (so thankful for the kitchen chalkboard wall!) and he wouldn’t get even one single of the ten words right on the spelling test several days after I took this picture, but he practiced and he TRIED.
After a long day in the classroom, he was willing to come home and re-bend his brain to the shape of letters, re-work his hand muscles to hold the chalk, re-will his short-term-reticent brain to remember these new words that need to mean something to him.
These small tasks that I can do in my sleep cost Chase’s brain space dearly. These sleep action for me are coaxed into Chase’s ability only with years of practice and rounds of expert therapy teams. Even the ability to curve a letter (like the first in his own name) is a fixed and practiced thing, refined in the fires of frustration, tears, and intense determination.
Sometimes this life isn’t about traditional success, but rather extraordinary effort – an incredible victory in and of itself. This moment; it isn’t about the memorized words or the score on his test, but about him pushing through “I can’t” to “I will” and “I did”. In an outside-the-box existence, sometimes the attempt is greater than the accomplishment.
The vase crashed to the floor, shattering the fragile glass. Water and greens tumbling off the wooden table and onto the freshly cleaned carpet as the rolling, tussling boys reversed direction, their war cries drowning out any attempts to arrest their attention.
And the irony was this: as my blood pressure escalated with their fight, I wanted to laugh because I was supposed to be writing about godly contentment.
“Jesus… What am I doing?”
Hannah and Chase
How do I possibly write about something that seems to be disappearing even as I reach for it? No, not even reach…just consider it. The more I tried to put trust in God and the contentment He brings, the more I tried to put that down on a glowing computer screen, the more it seemed to allude me.
And then short days later, we were driving through the dark hills of Pennsylvania with the DVD player blaring Holiday Inn and the unpolished, unfinished words had yet to be fully written and that’s when the panic set in.
“Jesus… What am I doing?”
Karsten and Benjamin25-year-long friends
And then it was suddenly the morning of getting up and saying all the words – speaking them to people who needed to hear. How do you give help and answers when you’re the weak one?
“Jesus… What am I doing?”
And then the answer; quiet and true. I’m doing nothing. I open my mouth, but it’s up to Jesus to open ears and hearts. And isn’t that just like Jesus…like his written promises stuffed throughout the Bible?
Strength when you need it.
Strength only and best when you recognize your weakness.
Strength to your own heart when you try to help others – so much blessing in service.
It was in laying down the stress of finding the right words, laying down the pressure to be the right person, that God made it right – made it light.
God uses the broken.
Moment by moment.
It’s far easier to practice contentment if I don’t think about any of it, but that isn’t true peace. At times, it’s almost easier to accept that parts of our stories are random than that the painful chapters could actually hold great beauty and purpose. Don’t be afraid to lean into Him for the hope he’s promised. ~ a brief quote from my time with the ladies of Bethel Baptist Church in Wilmington, Delaware
For the full transcript of the December 3rd Christmas tea talk: “The Gift Of Godly Contentment” (wherein I share what it has looked like to wait for God in our silent and desolate times) – click here.
Right now, there are no known cancer cells in Chase’s body…
For the last year, this one good but crazy thought has rolled around in my head; nearly taunting me as I write. It wasn’t until the last, short and quiet hours of 2016, as I looked to the new year that I finally had the courage to whisper-soft, consciously acknowledge the question that has been almost too big to consider: Why keep writing about a cancer life when there are no cancer cells?
The essence, the seemingly most dramatic part of Chase’s story to date is already in writing, so why keep at it? …to what purpose? Who cares and who listens?
And by that last question, know that I don’t ask for general edification and kind feedback, but in genuine bewilderment: my boy, he carries a weight of rarity with him and because of all the 1-in-a-million type scenarios, we carry that weight too. And this weight; well, it leads to wondering where we fit into life. It leads to questioning how our story works into all the life stories around us – genuine, bewildered musing if, short of the ultimate redemption story and the end of time; there is a place for our words. Is there a belonging for this half life that is, in reality a full-and-a-half life? At times, making a big, written deal about all the ongoing feels like I’m trying to sculpt an emotional mountain out of side-effect-riddled mole hills. This is decimating…but not as decimating as a brain surgery or a death, so…
Oh yes, my days (and often nights) are filled with atypical happenings that can almost always be traced to either cancer or treatment damage, yet, everyone has atypical and difficult things in their lives. So, why write?
Then the answer came in the whisper-soft: cancer, side effects, hard days, painful seasons – all of it – when you strip away the specifics like mutant cells, broken bones, poverty, illness – all of it comes down to this: The unexpected. The unplanned. The unwanted.
Bobby and I used to joke about this during Chase’s treatment. We always said that one day, we’d write a book called “What To Expect When You’re Expecting The Unexpected” — possibly followed by a sure-bestseller: “What To Expect When You’re Expecting A Brain Tumor”. Super light and fun reading, for sure.
But it’s true, really. The hard things are often the unexpected ones – the “please take this cup from me, God” ones and somehow, I forgot (and will surely keep forgetting) that the ultimate fight is surrender and joy in the unexpected.
So, I will continue to keep a blog about cancer – or rather, a cancer life as it evolves. And I will continue on social media too. Because even though there aren’t operating rooms and oncology halls in our daily life right now, I desire to see God in the unexpected and our stories are not yet finished.
Moment by moment.
Because the best way to handle the unexpected is to have a strong guide who goes ahead of you…
