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“Nobody told me that grief felt so like fear.”

C. S. Lewis, A Grief Observed

We call them brave. 

We call them warriors. 

We say they have a strength we could never comprehend.

And it’s all true. 

But they’re also weary and fragile and maybe afraid too. They are the parents who stand with broken hearts and empty arms.

Over the last days and years, I have had the honor of learning from them as they stay patient and brave around my awkward, overwhelmed attempts to comfort. So on this, the last night of September, before Childhood Cancer Awareness month fades away, here are these words of mine… taken from many of their actual words…and they are meant for me, for you, and for all of us who love the grieving and don’t always know how to help. 

There is no textbook for grief: Just like a deep reservoir of water, grief is powerful even when it might not be fully known beyond the surface. And a drop might leak out, or the whole damn might burst, but the depths are often unplumbed even by the one experiencing the grief and there is only the now – the next breath. So if that breath is used to sob. Accept it. If that breath is used to curse. Accept it. If that breath is used to laugh. Accept it. It would be all too easy to put the bereaved into a box full of ‘should’. But the heart of loving someone in grief is not to impose a correct set of actions, but occupying the same air and breathing it in and out with them – however that looks in the moment. 

There is no timeline for grief: Like water and time, grief is a wearing, carving, near living thing. Just as flood waters erode the land, so grief can chip away at the landscape of the heart and mind. Eroded rock is some of the most beautiful landscape in the world, especially as the sun shines full upon it, but it does not look as it once did and it never will again. It is beautiful simply as it is – wrought by time and the elements. So do not expect the bereaved at two weeks to be the same grieving person you see at one year, or two years, or even five. In some ways, the more removed from the moment, the more they hurt. Every moment heals the wound while simultaneously ripping it open a little too. For these parents, they are one breath farther from the moment their child died in their arms. But they are also one moment farther from the last time they held their child at all. Healing and blood, tearing and scabbing and scars – they all go together forever and there is no timeline. We do not always know how the grieving are changing, only that it will be beautiful in the end. And for now, there is only the breathing it in and breathing it out with them – however that looks in the moment

There is no cure for grief in this world: There is no Instagram filter for death and no platitudes that dry tears. Put them aside, please. After something burns, it will regrow in time, but it might not look like it did before. The burn that destroyed the soil left its mark forever. Likewise, there is no ‘getting over’ or ‘getting past’ the death of a loved one for the grieving. The absence of someone deeply loved leaves a noticeable, felt trauma. The skin around the scar will grow back stronger, but the nerves are closer to the surface too. So why should we desire the grieving to ‘get over’ it? To recover as if nothing occurred would be to negate the loved ones’ impact in our lives. Why would we desire this for them or ourselves? There can be no getting over, only getting through it because we were not created for separation, and in this, we can breath it in and breath it out with them – however it looks in the moment.

And dear ones, it’s not accidental that these grief analogies are tied to elements of the earth because just as the earth came about, so did grief. We were created gloriously, and then it fell apart and now there are tears and horror and un-comforted sorrows – all as old as the earth itself. And someday, the pain will be gone. We will be together again – the grieving and the lost – under the perfect light of the One who gave us life in the first place. But until that day when all the tears are gone and the pain is wiped out forever in ultimate joy, I believe with my whole heart that we have a responsibility to those who grieve. We have a responsibility to let them feel deeply. And to do this, dear ones, we must sit with those who grieve. We must just share the air with them – sometimes with words – many times without. 

So I issue you this challenge as I stamped it on my own heart in the writing today: Perhaps we are not to speak, but rather to listen. And perhaps we are not to change the course of the grieving, but they are to change our course. Together, we walk forward.

Moment by moment.

“For in grief nothing “stays put.” One keeps on emerging from a phase, but it always recurs. Round and round. Everything repeats. Am I going in circles, or dare I hope I am on a spiral? But if a spiral, am I going up or down it? How often — will it be for always? — how often will the vast emptiness astonish me like a complete novelty and make me say, “I never realized my loss till this moment”? The same leg is cut off time after time.”

C.S. Lewis, A Grief Observed

Note: One of the richest, most raw and real pieces I’ve ever read on grief is A Grief Observed, by C.S. Lewis (written after his wife died of cancer) – I would highly recommend this resource.

Note: If you are grieving today, please know that you are loved and that grief is never the end of the story. 

“As I turned from that moment of deep thought and encouragement over the pictures, I saw Chase – wobbly, unsteady Chase – who’d grown tired of all the artwork and decided to attempt fetes of daring instead.  The boy had come into the living room, stripped his shirt after painting, and had stacked a small, plastic chair on top of the soft couch cushion, and then stacked himself on top of the chair.  And there he sat as I turned, rocking with the unsteady chair perched too far above the hard wood floors, drinking his juice and laughing at something on the TV. 

“Chase!” 

“What?!  I’m being careful!”

“Chay, what would Dr. Lulla say if he could see you?” 

The impish look he threw me was as if to say it would be strange for him to be anywhere other than teetering on the brink of another disaster.  “He’d freak out.”  For, this is Chase.  He will always push the boundaries of safety and sanity just a little bit.  I think he would find life terribly boring if he didn’t…”

Chase Away Cancer: A Powerful True Story Of Finding Light In A Dark Diagnosis

Have you ever heard the story of Chase from the beginning?

This month of Childhood Cancer Awareness is a perfect time to start the story from the beginning with the Chase Away Cancer book. It’s also a great gift for anybody who needs some encouragement on a hard day.

In the the telling and re-telling of our stories that we strengthen our awareness and remember to be thankful. Blessings come in the most unique ways.

…moment by moment.

Purchase your copy of Chase’s Story from my two favorites – Tyndale House Publishers or Amazon today!

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.

People never tell you that sitting hunched and weary next to a hospital bed is going to start to feel not only normal, but appropriate and right. People also never tell you that leaving the room (let alone the floor or the building) might fill you with all sorts of feelings, 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 the sake of their life. It will feel wrong to do all these things…

But do them 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.

I know it feels like life is ending, and in a way it is – the way you’ve known it is. But also, it really, really isn’t ending, 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 there are plenty of rational ones in our scenarios), and keep leaning in 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. …because small life victories like this kind of self care are sweetness that don’t give you cavities.

Then (or possibly do this very first thing)…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 your “stretcher bearers”. Because you will need the holding up – desperately.

Speaking of needs; it’s okay to be a hot mess. I need to say that once more…

It’s okay to be a hot mess.

We live in the digital age of perfectly projected parenting 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 this is even before a diagnosis). 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.

So, don’t pretend to be okay if you’re not okay. You’ll be amazed how often your struggles will encourage somebody else – 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 and the best food within walking distance, to making time for spiritual and physical renewal (and don’t forget to ask for extra blankets), but for now, just keep breathing and don’t ever forget that you are so brave. Furthermore, you are not responsible for the weight of the world, the outcomes, or even one whole day. Just take it moment by moment.

Signed with love from the trenches,

Ellie

“You should elect me to the student council because I’m kind.” He curls over the paper like his long, thin fingers curl around the pencil. “Now, how do you spell those words?”

He writes, balancing the torn piece of journal paper on the back of a volume by Winston Churchill and it’s so very fitting – so classic Chase. 

He is so strong and decisive as he goes into this fourth year of grade school. And he is remarkably energized considering the summer he never really had. 

For, you see, the day after he left third grade, he began a few days of tests that lead to phone calls and quickly scheduled more tests, all of which lead to the discovery that Chase has more cancer in his body. They are tiny little pieces – just a few, really – in the site where the thyroid was removed and in the lymph nodes. But tiny or not, they are definitely there and are cancer.

And just as we began to truly absorb that knowledge, on the morning of June 27th, Chase had his first seizure in seven whole years. It was gentle and so small that I questioned my sanity in calling it a true seizure, and of course it ended just as the first responders hit the threshold of our front door, but that small neurological rebellion was enough to put Chase into the local hospital, where he was then transferred to his ‘home’ hospital downtown. He then spent three long days getting test after test – while we held our breath, begging and praying that there was no brain cancer relapse. 

And it’s strange and awful how thyroid cancer, secondary cancer, and even the thought of relapse and spread all pale to the thought of brain cancer re-growing when you know the options to cure it and kill it are already all used up – when the head of the department puts his hand on your arm and says “It’s going to be okay no matter what happens”. Suddenly, thyroid cancer felt easy and that felt sick and wrong.

In a gift of grace, his brain and spine were clear of cancer, but not four week later, another seizure came harder, longer, and more scary, and after more meetings and tests, it was decided that there’s a good chance this is just Chase’s brain staging it’s rebellion to trauma. After all these years and all that’s been done to and for Chase, those precious few pounds inside his scarred skull finally reached its limit and so it seizes – a silent scream against all that it’s put up with over the years. And I can’t really blame it, can you? It’s just sort of amazing that it took seven whole years for the brain to reach it’s trauma limit. 

And so between the seizures and the size of these new little cancer areas in Chase’s throat, everyone is a little hesitant to cut and treat. Not only is his body showing signs of its limit for the now, but the cancer is in an area that is surgically complicated – cutting in would almost assuredly damage his vocal chords and there is no guarantee that the surgeon would be able to remove it all – high risk, little to no reward, and absolutely zero guarantee that it wouldn’t have to be done again.

So we wait… literally wait for the cancer to grow big enough that the risk of keeping it in outweighs the risk of removing it. And then we say a prayer that it only grows where it lays and does not spread to his lungs, as such cancers are known to do. 

How we feel about these events and how we are even now just beginning to process them as we wait for next steps and time lines are the subject of a whole different post – yet to be written – but even as we make sense of it all and sit in the battering unknown, there is a constant: God loves us as much as He did yesterday and as much as he will tomorrow. His love never fails – even when all else does. 

How God can love us and allow these cancer things at the same time is a subject for yet another post – that I will write someday, I’m sure – but for the now, we choose to believe in this love that does not let us go – no matter what. It is often inexplicable, but it is ever constant, and that alone allows us to find peace in the wait.

And for now, in this moment, though weary, Chase is stable. So we give thanks, moving forward in the knowledge that we are loved.

…moment by moment. 

“Could we with ink the ocean fill
And were the skies of parchment made
Were every stalk on earth a quill
And every man a scribe by trade… The love of God is greater far than tongue or pen can ever tell.” – Lehman