It was Oct. 28, the night before the major work event that had brought me to Calgary, and two nights before I was scheduled to take in The Airborne Toxic Event’s hotly anticipated homecoming show at the Greek Theatre in Los Angeles.
I was at my favorite restaurant, enjoying my annual dinner with my mother and grandmother – something we do every October when business brings me back to my home town.
Appetizers had just arrived when I took The Call from home.
And the phrase that fell from her lips left a rip from the top of your shoulders to the point of your hip…[i]
A decade earlier when our third daughter was born, the spectre of Leukemia had rudely elbowed its way into our consciousness. She came into the world with a condition that is unique to babies with Down syndrome, called Transitory Leukemia. Though it looks like Leukemia, it is not actually cancerous, and it self-resolves within the first couple weeks of life with no harm done.
Nevertheless, children born with TL face a higher risk of getting the real deal within the first five years of life. Children with Down syndrome carry a higher Leukemia risk as it is (about 1/125), but until she hit that magical fifth birthday, Becca’s chance was 1/4.
Every six months we held our breath as we awaited test results, exhaling in relief each time they came back clean. As we passed the milestone and her risk level dropped to longshot levels, the fear began to recede. Within a few years, it was nothing more than a hazy hypothetical we rarely ever thought about.
And so when the phrase, “She has Leukemia” fell from my wife’s lips on that evening last fall, it ripped through me like a rapier.
I fingered my appetizer as I stuttered a stunned explanation to mom and grandma, straining to make sense of what I’d just heard, and to figure out what exactly I was supposed to do now.
The next seven hours are a blur. Apparently I made arrangements for the work event to proceed without me, changed my flight, packed my bags, flew to Vancouver and drove an hour from airport to home – though I hardly remember any of that.
I do remember posting something on Facebook, though. Too early to tell the world what was happening, all I could think to do was to quote one of my favorite Airborne songs, the sting of which pierced me like never before.
And it comes like a punch
In the gut, in the back, in the face[ii]
I stepped through the door, mind swimming. The house was asleep, save for my wife. Becca was sleeping in our bed. As I peered at her in the dim light, she looked exactly as she had when I left a few days earlier, but somehow completely different. Nothing had changed, and yet everything had changed.
As I took her body into my arms and carried her to her own room, I could almost sense the tangible presence of the vicious intruder in her bloodstream. I gazed at her face, innocent and blissfully unaware of the battle raging inside her. A hard lump took root in my chest, rising quickly to the back of my throat.
Please don’t ever leave. Please don’t ever go.[iii]
That knot in my stomach would become achingly familiar in the ensuing months, even to this day. It returns when she asks me for the umpteenth time where her hair went; when she crawls up the stairs because her legs are too shaky to walk; every time we force her to submit to a scary medical procedure that she doesn’t understand the need for; and especially on those occasions when she’s just too spent to protest.
They warned us that, while Down syndrome may actually improve the Leukemia prognosis, it could also make her more susceptible to other complications.
Ha. If only they knew.
The protocol for a typical child calls for a week in the hospital to begin treatment. For kids with Down syndrome, they stretch it to a month. In our case, one month became two; the fall from hell bookended by Halloween and Christmas, hospital style.
If there’s a potential side effect, Becca has suffered through it. Five bouts of c-diff, featuring the most wicked cases of diarrhea you can imagine, causing crippling diaper rash. Irritation at the site of her spinal tap that had the infectious disease team casting wary glances. Temporary diabetes brought on by steroids – something that we can look forward to a week per month for the next year and a half. Kidney function dropping, then recovering. Horrific mouth sores that rendered her lips giant scabs and prevented her from speaking, much less eating. On and on and on it goes, to the tune of 120+ nights spent in hospital out of the past 240.
Every person you meet can tell you’re a ship taking water in a storm and you’re starting to sink.[iv]
For the first couple months, our other three kids coped admirably as mom and dad rotated hospital duty every other day. But they are entitled to their own crises, and life has seen fit to pile on, rendering these last eight months a cruel joke that never gets to the punch line.
In one darkly comical episode, our young son inhaled a cookie. As I sat with Becca at Children’s Hospital, my wife rushed The Boy to a hospital closer to home. While she argued with the intake nurse about the severity of the situation, he passed out in her arms. That ended the argument really quickly. They were whisked into the ER, where 14 hands belonging to seven doctors and nurses immediately descended upon him. From somewhere within the chaos, a voice called out for the pediatric crash cart, while my wife stood by in numb terror.
I learned about all this by text after the crisis had subsided. They revived him, and when it became apparent that he would be in hospital for a few days, we arranged to have him transferred by ambulance to Children’s, so the four of us could at least be under the same roof.
That’s how we ended up with matching rooms on the same floor of BC Children’s Hospital for two nights, where my wife and I swapped places every few hours, meeting for “dates” as we passed in the hallways.
The thing about love: it’s never enough. Circumstance changes and life’s always calling your bluff. Enough is enough.[v]
Each time we think we’ve maxed out what could go wrong, life laughs.
Minivan kicks the bucket on one of our trips to the hospital.
Enough is enough.
Teenager begins to struggle with panic attacks and depression.
Enough is enough.
12-year-old needs braces.
Enough is enough.
The Boy starts waking up four times every night, forcing me out of bed for good at 4:30 am. Every. Single. Day.
Enough is enough.
The Boy faints at school for no obvious reason, ending up back at Children’s Hospital to figure out why.
Enough is enough.
For the piece de resistance, how about an international legal incident? A sleezy Turkish website stole a photo of Becca and offered it for free download alongside other stolen images of children with Down syndrome. An equally sleezy multinational biomedical company based in Switzerland promptly got their hands on it and plastered our beautiful daughter’s face on a building-sized banner promoting – wait for it – their new prenatal testing product that helps families avoid having a child like ours, thus placing us dead center in what has become a worldwide media story and legal situation. As we slogged our way through the most intense phase of chemo, we were fielding calls from reporters on the one hand and lawyers on the other, the point of complete and utter emotional exhaustion having been passed long ago.
When life calls your bluff, she doesn’t fuck around.
And the feeling that you get is if God exists he’s really unkind.[vi]
Ah yes… God. As he’s known to do, he’s been hovering in and around this whole situation.
He’s there in the hundreds of Facebook messages from people promising to pray for us – some of them even crying out on our behalf, “Enough is enough.”
He’s there in the “Praise the Lord for small mercies” comments that come each time there is the smallest hint of an improvement in our lot.
He’s there in the gifts abundantly poured out on our children, in rides given and babysitting offered up and meals lovingly cooked and money freely donated, much of it expressly given as an outworking of our friends’ steadfast faith in God.
There’s just one problem.
I’m not really sure I believe in God anymore.
And what’s more… I’m not really sure I even want to anymore.
Which is not to say that I’m not grateful to the core for the prayers, well wishes, positive energies, healing thoughts, and acts of extreme generosity that have been sent our way by believers (and unbelievers, it should be noted) of all stripes – because I am. We would not have survived without our legion of faithful supporters, and whatever their motivation, I am endlessly thankful. It’s just that, to me, the value of these acts is found in their significant real world encouragement rather than anything that may or may not be accomplished in the heavens.
It would be easy to write off my shift from believer to agnostic as a knee-jerk, bitter and perhaps temporary reaction to our overwhelmingly difficult circumstances. Except that’s not at all how it happened.
As is typical of my all or nothing approach to the things I care about, when I decided to follow God at the age of 16, I was all in. My new beliefs reshaped my entire life, leading all the way to a decade-plus spent in full time Christian ministry.
As someone who tends to live in his head, my faith was built on a foundation of books. Really thick ones, with no pictures – scholarly theological tomes that for most would be a cure for insomnia, but for me were an endless source of fascination and stimulation. Over 15 years, I read more than 300 books and completed a dozen university level religion courses, some at a secular school and others at seminary. I argued with liberal professors and left convinced that I was right. I was as certain as anyone could be about what I believed.
But then, it’s easy to be certain when you only ever engage with thinkers inside your own camp. Every book I read only served to confirm and buttress beliefs that I already held – never to question them, much less refute them. If the other side was ever presented, it was only as a straw man, set up in just such a way as to allow it to be spectacularly knocked down.
If you smash your life up against the wall, you want to break it like a bottle and just let go,
But I don’t know if there’s a God at all, I just know I can’t live like this no more,
I just know I can’t live like this no more.[vii]
My first gentle nudges in a different direction came not from suspects outside the camp, but from those who were still inside and yet bold enough to explore its edges: those who poked at sacred cows just hard enough for me to see that there may actually be other ways of seeing things.
For eight years I asked questions and sought answers, and the more I did so, the less satisfying I found the ones to which I had once clung; finally arriving at the point where I just had to admit it: I no longer believed what I used to believe.
But I still wanted to. All our friends and most of our family were believers. Our kids were brought up in the church. My wife’s faith has gone through tremendous changes, but remains strong at its core. It would have just been so much more convenient if I could have somehow willed myself back on board.
This is the intellectual and emotional backdrop to my experiences over the past eight months.
Oh and God just go and leave me all alone I’m not your son, I’m not your son, everybody dies alone. In your world, was it not quite hard enough for you? I guess like anyone, you’ve got your own scores to settle too.
And I’m so pissed tonight, I feel just like the last remaining Canaanite, and I’m not sure if I want you to save me. And I’d be less uptight if I knew the sight of blood is just a weakness, right, and not the reason that you made me. Sometimes I think it is.[viii]
Driven as I am by the brain rather than the heart (no doubt to my great detriment at times), I’ve never had much time for emotional objections to faith. Questions like, “If God exists, why did he let this happen?” carried very little weight with me, even when the ‘victim’ of the perceived injustice was me. And while our recent trials and tribulations are not responsible for my step away from faith, they have certainly changed my perspective on the relevance of feelings to the God conversation.
When well-meaning friends promise to pray, or exhort us to have faith in God’s good plan, I can’t help but wonder…
If God exists, what reason do I have to believe that he’s on our side in this? If he is who you think he is, could he not have prevented some or all of this from happening in the first place? Could he not have answered the thousands of prayers that have already gone up on our behalf by at least refraining from adding to our burden, rather than allowing one disaster to pile upon another? If God is in control, then he chose to allow this mess; why then should I look to him to deliver us from it? And if he gets credit for the rare and fleeting piece of good news that we receive, should he not also bear the blame for the mountains of bad news that tower all around us?
Some may point to my lack of faith and posit that perhaps all this is happening so that God might get my attention. In fact, some have come right out and suggested as much.
Truthfully, I can’t dismiss the possibility that this is how God works – except to say that inflicting an innocent little girl with a horrific disease that she can’t even comprehend is a pretty ass-backwards way of convincing her parents that you love them. Whatever may be the consequences of unbelief, a God that either consciously causes or passively permits this type of tragedy in order to draw people back to himself is not particularly attractive. Worthy of fear? Perhaps. Worthy of worship? Questionable.
Further, my previous experiences as a devout believer tell me otherwise. As I look back on thousands of hours spent in sincere prayer over nearly two decades, five requests stand out as the items for which I prayed most frequently and fervently: our five pregnancies. Never in my life have I prayed for anything with more hope, more faith and more urgency.
Five pregnancies. Two stillbirths. Two healthy children. And one precious daughter, loved to the moon and back exactly as she is, born with a disability that will shape her life forever and that has led directly to the disease that is currently wracking her body, while some faceless company questions whether she even has a life worth living.
The numbers don’t add up in favor of a loving God who answers prayers offered in faith. And yeah, I’ve considered every possible justification – theological, philosophical, emotional and otherwise – for why he may have allowed this or that. I’ve written A+ papers arguing that the problem of pain is not, in fact, a deal-breaking problem for faith. I’ve tried hard to talk myself into believing it.
But I can’t. The most I can affirm at this point in my life is that if God exists, he’s really unkind – and thus, I’m not sure if I want him to save me.
I’d love to tie a pretty bow on this and finish off by sounding a hopeful note.
But Songs of God and Whiskey don’t always have a happy ending.
[i] The Airborne Toxic Event, “My Childish Bride.”
[ii] The Airborne Toxic Event, “All At Once.”
[iii] The Airborne Toxic Event, “Something You Lost.”
[iv] The Airborne Toxic Event, “Why Why Why.”
[v] The Airborne Toxic Event, “The Thing About Dreams.”
[vi] The Airborne Toxic Event, “My Childish Bride.”
[vii] The Airborne Toxic Event, “The Way Home.”
[viii] The Airborne Toxic Event, “Poor Isaac” (original demo lyrics).
Glen is the founder and editor of This Is Nowhere. He’s grateful for an understanding wife and kids who indulge his silly compulsion to chase a band all over the Pacific Northwest (and occasionally beyond) every time the opportunity arises.