what happened after we got the diagnosis: about brokenness, suffering & joining The Club
‘Without the shedding of blood, there’s no serving of dinner.”
The kid laughs like the only hyena in on a dumb joke.
“Get it, Mom?”
Yeah — yeah, I get it, Son. I’m gathering up his little bloodied test strips.
He looks as white as the snow that’s been falling like a death shroud around us for days.
He’d woke up looking ashen when our 2016 was hardly more than 24 hours old.
Grey, translucent skin. Sunken eyes, like bruised blue half moons had set under his eyes. Gaunt, his shirt hanging angular off bony shoulders.
Yet the kid never left the table without asking for second and third heaping helpings. But nothing seemed to be helping?
A robust farm boy of 13 eating like he was famished — and yet fading away.
The Farmer and I’d been saying it for days — as soon as the holidays were over, we were taking Kai in for the doctor to ply a fine tooth comb over him and tell us why the boy ebbed.
But when Malakai came in from the barn early on January 2nd and stepped on that scale some brother had left in the kitchen to weigh the dog, he muttered, “7 more pounds this week —“ he looked up at me, “I’ve lost 20 pounds since my birthday.”
No lie, I lunged toward that scale, not believing, shaking my head, looking down stunned at the number: 107 pounds. 5 foot 8 and 107 pounds? And relentlessly eating like the boy hadn’t seen food this side of a month?
“I’m thinking ER. Now.” The Farmer’s in from the barn right behind him, standing behind him, wasting no words. “No waiting till Monday and regular clinic hours after holidays. We go now. Brush your teeth, Malakai, and get your coat.”
“And underwear. Get on clean underwear.” I’m looking for my boots, Malakai’s health card, a brush for Saturday morning bedhead, a tube of lipstick for my bag, trying to remember important things, things that’d have made my grandmother nod approval — and I’m trying not to think why a voraciously eating boy looks like death warmed over and is dropping pounds like dying flies on the last days of summer.
I don’t know when I knew.
But I knew before the doctor on call told us.
I’d murmured the name of the thorn that I thought was waking us, murmured it to the Farmer on the way to the hospital — and he’d turned to me: “Well, that wouldn’t be what we’d really planned or wanted here. But it’s looking like it might be the easier of all the possibilities we’ve got here.”
Snow had started to fall, large flakes, lazy and soft and soundless.
“We’re going to be okay, right?” I had mouthed it to him, the worship CD and Ellie Holcomb playing the strings of the guitar unworried.
“Definitely. It’s all going to be okay. You know what we’ve always said —“
He squeezed my hand at the top of the hill there, just before you go by the vet’s. “All God’s plans are always good and all His ways are always for us.”
I know it.
I know it and there words that aren’t some cheap cliche but are your dying creed — and I swallow hard round that burning ember lodged up in the throat of me.
The Farmer said it later, when it was just he and I in an empty hospital hallway —
that it hadn’t really hit him, even when the nurse took Kai’s blood and told us the numbers.
Even when she said a normal blood sugar is 5 mmol/l — and your boy’s is seven times higher — 35.
It sorta echoed down the hall when the Farmer said it:
“It didn’t really hit me until the doctor came in and sat down on the end of his bed and just said that so quiet: “You have Type 1 Diabetes. And to live, you will need insulin 4-6 injections a day for the rest of your life.”
The Farmer’s standing there, letting that settle: This isn’t a broken arm and 6 weeks we get the cast off. This isn’t the flu and we beat this virus. At least for right now, there’s no cure. At least for right now, there’s no pills, no diet, no exercise will ever make it go away, no getting a reprieve from it.
It’s constant insulin awareness or death.
I squeeze his weathered hand.
“Happy New Year to us.” And he winks, smiles, nods, everything believed coming to meet us now.
Right out of the new year’s gate, you can sorta feel flattened by a bus speeding over a 100 down a straight back road.
You can feel like everyone else is mapping out their future, mapping out a new year — and you’re standing there with the map, looking for the red arrow that indicates where in the world you even are now.You can make your plans — but it’s God’s plans that happen.
You can blink and the landscape of your whole life can change and you ain’t in Kansas anymore and how do you not look a little bit lost, how do you look like everything is fine, and everybody is going to be fine, and really, we really are all just going to be just fine, everyone move along, we just need a minute to pull ourselves together here.
“I feel like we just joined a club.” The Farmer squeezes my hand back — yeah, just some green, very junior members in a club where there are some serious fighting warriors.
The Club that knows we don’t get to make the plan, where there are veterans fighting on the front lines of the unimaginable, IV drips of cold chemo coursing down the veins of the beloved and defiant, The Club that knows about the hurling vomit in a life battle all through the hours that everyone else sleeps and mothers stay up all through the godly hours with the seizuring and the struggling to breathe and there’s so many brave all down our streets in this war dance in the face of death.
This Club of warriors with medicine bottles at their sinks and needle marks up their arms and doctor appointments on the calendar and there is The Club of all of us who hurting in hidden ways and are beating back the grave.
“Happy New Year to Us —- Welcome to The Club.” He pulls me close.
It’s okay — it’s all really going to be more than okay. Grieving how plans change — is part of the plan to change us.
It’s okay to let go of comparing suffering, let go of avoiding or ranking or minimizing suffering and simply embrace suffering and all those suffering.
It’s okay to not be okay, to not feel strong, to carry an unspoken broken. It’s okay to be real and grieve losses and hold each other tight. He and I hold unto each other in the dim light of the hospital rooms, alarms going off down the hall.
Malakai pushes himself up in the hospital bed and he tells us something I will never forget, sunken half moons under his eyes:
“Looks like God knew my story was going to be bit different…. and that’s sorta cool.”
He smiles quietly, nods like he’s telling places in me of forgotten things.
“And this hard thing’s going to make me rely on Him more —- and that’s even more cool.”
I nod. Yeah, Son — cool.
Never fear the moments you imagine will freeze you: Unexpected blasts of cold can be what draws you nearer to the flame of His love.
Darn the cold. Thank God for the fire. Welcome to The Club of those braving the cold blasts in a thousand daily ways.
“He’s real —-“ the kid’s nodding his head, “I’ve never felt God so real.”
I wanna tell the kid — That’s what happens when you get pushed out of the shallow end. When you find yourself in the real deep end — that’s when you know He’s real. Adios playing and splashing in the shallow end. Live where you can’t touch bottom — swallow God.
“I can see that, Mom —“ He’s smiling. “The hardest things can be the greatest gift. I can see that.”
The kid’s seeing things. Things I forget, things that can feel like a mirage at times for me, the kid’s feeling solid… things that I’ve let slip through my rope-burned fingers, the kid’s holding on to like a lifeline in his brave hand.
Kai pulls up his shirt, aims the needle at his own skin, injects his belly with 21 units of insulin, dabs away the bit of blood: Stay in this moment: You’re safe in this moment because God is in the present — I AM.
Malakai grins over at me, needle still in hand: “I am glad — I am glad God gave me joy.”
The kid’s courage draws more attention that his complaining ever would. I want to write it down on my hand to remember: Brave joy is the magnet for everything you need. The boy knows things I’m learning.
I sit on the edge of his bed, trying to read the kid’s eyes, my heart trying to braille-read what his heart’s really saying by the way his eyes make my heart feel.
The kid’s got no idea that The New Normal means heading down to city’s Children Pediatric Hospital.
Where our farm boy will sit with his needles in the waiting room at paediatric oncology with rows of brave kids with bald gleaming heads sitting on their mamas laps like strings of courageous pearls and you’ll look into Mamas eyes and smile at their warrior babies and you’ll be loving The Club of the Broken with all your broken heart.
The New Normal means 42 injections in his stomach of insulin every week, 56 needle pricks in the fingers, then milking his finger for drops of blood for test strips that will tell him how much sugar runs through his willing veins.
The New Normal means a life of being vigilantes, of charting numbers, of thinking your heart might bust with loving all the suffering in The Club and it turns out every single one of us, in one tender, hurting way or other, are in The Club.
The kid doesn’t need to have any idea of this — because the kid knows he only needs this: this moment’s grace.
And I nod at his grinning brave.
The grace that’s in this moment is your mana.
Wish for the past and you drink poison.
Worry about the future and you eat fire.
Stay in this moment and you eat the mana needed for now.
When I stand out in the hallway while the Farmer helps Kai and his IV pole to the washroom, when I’m standing there reading through the kidney, heart, and nerve issues surrounding Type 1 Diabetes, reading about how someday, a mandatory year or so down the road, maybe doctors will let us think about an insulin pump and how maybe the road will smooth out a happy bit then — and how we’ll stir pots of chilli with one hand and give insulin injections with the other and this new normal will be like old hat — when I’m standing there refusing to be sucked into into the worry burn of the future, I read:
“Type 1 diabetes, which is only 5% of those diagnosed with diabetes, may reduce the normal lifespan by 10-15 years. Approximately 1 in 20 younger people who have Type 1 Diabetes die in their sleep, what is generally referred to as death in bed syndrome.”
Oh — that can change — it doesn’t have to mean 10 less years.
I stay that night at the hospital, watch Kai sleep in a hospital bed, watch the snow fall outside his window during the middle of the night hours.
And I think of 10 full spins around the sun, 10 more puffs over birthday candles, 10 more first days of spring and how March sun feels on your face. I want him to wake, I want him to wake every morning, I want him to have those full 10.
I want all the hurting and brave in The Club That is All of Us, to beat back the odds, the dark, the fear, the pain, I want all the fighters in The Club That is All of Us who swing Hope at despair, who pummel worry with worship, who make every move with courage while everybody else moves on —-
I want that Club to inhale fresh air and have another glass of orange juice right now and taste the phenomenon of being and feel wind through the hair and believe that what you believe will come to you in your hour of need and today is a miracle — why do we get two?
It falls like fresh snow in the middle of the night, like the steady beat of the heart, like the rhythm of our being:
This life of ours is not our own — He owns our life.
This life of ours is not our own — His life is our own.
This life of ours is not our own — We are His own.
And I turn from the night window and the falling snow, to our boy sleeping in a hospital bed the second day of the new year:
There’s The Club of the Broken who ask: So what if we suffer — here is not our home.
There’s The Club of the Broken who believe: Suffering is a gift He entrusts and He can be trusted to make this suffering into a gift.
There’s the Club of the Broken who live it because there is no other way:
Just stay in the moment. The grace in this moment is your mana. Stay in this moment and you eat the mana needed for now.
I watch how the kid’s eyelashes tremble a bit in sleep. Even in dreams, we can’t deny that getting to live is holy ground.
Come morning, the snow gives way to the light, like the hope of a lifting shroud.