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.
My dearest Fellow Parent and Partner in the Awful Fight,
First of all, you are so brave. Even when you feel like a huddled, sobbing child yourself – never forget, you are fulfilling your role as the lover and caretaker of your child and you are just so, so brave.
There are so many places I could start, and in truth, this could probably be a volume rather than a letter, but I’ll try and keep it short as I know you’re probably already on overload.
First off, they almost never tell you that sitting hunched and weary next to a hospital bed is going to feel not only normal, but appropriate and right, and leaving the room (let alone the floor or the building) might fill you with all sorts of things, not the least of which is dread. Nobody tells you that it might feel strange to breathe and function in the normal world when your baby is attached to IVs and monitors for their life. But do it anyway. Give yourself a place to breathe as if your own life depends on it – even if it’s forcing yourself out onto the city street with shaking knees and eyes filled with tears for just a minute or two.
Chase in post-op; sleeping off the anesthesia
I know it feels like life is ending, but it isn’t, so try not to let it close in on you. Your perspective has been drastically, irrevocably altered, but it is not gone altogether. Fight against your irrational fears (because trust me, there are plenty of rational ones in our scenarios), and keep pushing into it all to find your “normal” – a sliding-scale word that will likely henceforth only be referred to with quotation marks in your life. Some days, going to the cafeteria for a coffee is going to feel like the pre-cancer equivalent of cleaning your whole house and running all the errands. Victory is sweet.
Also, If you find yourself able to go see one doctor for yourself – make it a dentist. Do I sound crazy? I probably am. It’s hard to think about teeth at all when your baby’s hair is falling out or their nourishment comes through a tube in their veins. Sometimes you spend the day in the hospital and are home for only a few hours before going back and sitting in the ER until 2AM. On these days, self care of any kind feels counterintuitive, but trust me, you don’t want to deal with all the cavities when you resurface from treatment in two or three years, so if you master the whole “leaving the hospital thing”, go see your dentist. I’m saying these crazy things because I care, really.
Next, or probably in truth, even before you go to your dentist, find your “circle”. When it goes public that your child has cancer, a lot of people will want a piece of you and your story. People you haven’t heard from in decades will come out of the woodwork just to let you know they love you and are praying for you and want to do something for your family. It’s amazing and a little embarrassing that something so awful brings so much “special”. However, not all these people are in your fight for the long haul or will speak into your life (as opposed to taking a piece of it), so find your long haulers. One, two, six…the few, the trusted, the prayer warriors, the 24/7 texting-phone-always-on-friends who say they love you no matter what, will help you no matter the time or demand, and only give advice when you ask. These are your people for the marathon. They will be, as my dear friend Judi says: your “stretcher bearers”. Because you will need the holding up – desperately.
Chase with some of his “circle”… #SquadGoals
Speaking of needs… it’s okay to be a hot mess. We live in the generation of perfect parents with all things filtered and pinned and the truth is that it’s all too easy to forget that life is messy. No one parent can do all that is thrown at them in a day, let alone all that is expected, and then you add a cancer diagnosis to this guilt-riddled scenario? Well, say goodbye to sanity! Okay, so perhaps that’s a slightly dramatic comment, but I really mean the heart of it. We are broken human beings trying to care for other broken human beings and our bodies are fearfully and wonderfully designed, but year after year of extreme stress, emotional turmoil, sleep deprivation and facing terminal situations all take their tole. I guess what I’m getting at is this: there are many ways to go through this journey, so don’t look to the parent next to you – look to yourself, and don’t be afraid to get help if you need it. Anxiety, depression, and stress are real and devastating on an emotional and physical level. We were never created for this and anyone who Facebook memes you to just be strong…well, it’s nice, but the truth is we’re weak…and that’s not all bad. If you learn anything from cancer, let it be this: life is too short and too precious to be anything other than raw and authentic. Don’t pretend. You’ll be amazed how often your struggles are shared and your words identified with – because we’re all broken.
There are so many other little things I’d love to tell you…from the secret to finding washing machines in the hospital to making time for spiritual renewal, but for now, I’ll close – simply reminding you again that you are so brave and you are not responsible for the weight of the world, the outcomes, or even one whole day. Just take it moment by moment.
This past week, we finally finished up all of Chase’s follow up appointments from his January MRI. I never get tired of seeing him interact with his doctors. This time, he brought his St. Baldrick’s cape (a gift from the staff for his ambassador year) and his new Spider-Man mask. He ran through the halls saying “Zoom! Pow!” until he tired of people talking to him, and then, stripping off his costume, he lurked in the clinic doorway and made silly faces at any doctors or nurses he saw in the hallway. He also tried very hard to tell one of the doctors the new “knock-knock” joke he’d just learned from his kindergarten teacher (“Orange you glad I didn’t say ‘banana’?) and it was something of a fruit basket upset that was pure awesome and complete Chase. Life is never dull, that’s for sure.
Despite the good results of his January MRI, there are several continuing issues. After two years of stability, Chase’s hearing loss has gotten worse. Also, his growth has almost completely fallen off the charts – introducing conversations about the potential need for growth hormones. This is something for which Chase is potentially an excellent candidate, but something that also holds a very real threat of secondary cancers. (deep breath and lots of prayer…)
Before the end of July, Chase needs to do the following:
Have two separate surgeries on both of his eyes to remove treatment-induced cataracts that will leave him with the eyes of a 45-year-old (even after the surgery)
Have an echo to check his heart for chemo damage
Have a bone scan to check the age of his bones (a prerequisite for the growth hormone discussion)
Have a consult with his ENT to determine if he needs surgery to remove his ear tubes (they’ve been in for two years now and are showing signs of wear in his ears)
Possibly have an ear surgery
Have another audiology test to determine if he needs some type of hearing assistance
Have blood work done for at least two of his doctors
Have a full brain/spine MRI
Meet with his neuro-oncology team
Meet with his neurosurgeon
Meet with his endocrinologist
And all of this is in addition to the behavior therapy consultations he needs, the IEP meetings, and the weekly speech, occupational, and physical therapy needs.
What a laundry list. I spent nearly three hours on the phone one morning just setting up appointments and coordinating with hospital staff and dates. Currently, my calendar makes me want to go hide somewhere.
The danger in making a list public is that someone always has a longer and more complicated inventory of things to accomplish. Maybe it’s you. Maybe you’re looking at my “Chase list” and thinking: “Wow, she has no idea…” – and you’d probably be right, but I made this list up and wrote about it for two reasons…well, three, really.
Pray for us. The decisions ahead regarding growth hormone are not to be taken lightly and feel like some of the most weighty things we’ve talked about since the decision to radiate Chase’s brain.
God is faithful. I need to remember this when I look at all the next few months will hold. He’s seen us through this far and He’s not about to stop now.
Hug a cancer survivor. Today, please. This is what “survival” looks like. It’s a weird medical purgatory where you’re not really in treatment, but you’re definitely not out of needing help either. So hug them close and tell them they’re amazing because the battle wounds are real and never quite go away.
Tying it in: Chase’s appointment list reminds me of my life. Too much, too complicated, too crazy… How do I reconcile all the broken? How do I best understand what God wants for me? …for our family? This is the moment by moment nature of it all. I need to lean in; seek Him. Thankfully, He isn’t done with me yet. …with any of us yet. The list is in His hands; life is in His hands.
“And I am certain that God, who began the good work within you, will continue his work until it is finally finished on the day when Christ Jesus returns.” Philippians 1:6
Moment by moment…
{Below: some pictures from our clinic day at the hospital}
Calmly, the super hero makes his way through the metropolis…Chase taking a “selfie” with his Nurse Wendy, our family’s brain tumor coordinator and a part of our heart.Chase and his friend, Matthew, meet up and play “got your nose” in the Crowne Sky Garden after their appointments.
We sat at the long table in the restaurant. A table full of friends who had invited us to join them and we’d agreed. I looked at Bob and he looked at me over the wiggly, wriggling heads struggling to sit still like grown-ups do. How crazy were we to say yes to a restaurant with three little boys in tow?
Chase especially struggles to sit still (a running family joke given his name), and so he’d sit for a while at the table and then as a reward, I’d get him up and let him walk around and back before sitting a spell again. And I watched people watch him… His shoes are like the shoes of other boys, his clothes and eyes and energy and everything else…and then his white, white head and the slightly faded, but oh so noticeable scar that runs the length of skull and you can see the looks of pity, the politely averted eyes. I don’t blame them. I’d do the same thing. I find myself wanting to run up to them and say “It’s okay! Look all you want! This is a miracle in front of you!“, but instead, I smile, move on and caution Chase not to trip the servers in his enthusiastic dash.
You see, sometimes being out in public with a visibly chemo-worn child is like stepping in front of a mirror. When we’re home or with good friends, we’re just us and everybody knows Chase. But when we step out, like that day in the restaurant, it’s a mirror. Stop. Look. We’re different. This scar says our life looks nothing like yours. The loudest of reminders in the slightest of glances.
And then, a family approached our table. They spoke of mutual friends and places from years past, they knew Chase from his Facebook page and they prayed for him and they’d recognized him. And then they encouraged us with their words and pressed a gift card into our hands. “Your lunch is on us“, they said. And then they were gone.
The gift card sits as a reminder with my papers – you just never know. There in the mirror that day, there was fellowship and joy because of the recognizable scar.
So pay it forward, play it back, make it right, stop to help – don’t be afraid to make eye contact because you never know when you might be staring at a miracle. And you might be stepping next to a battered parent in front of a battered mirror and showing them joy.
