You have kept count of my tossings;
put my tears in your bottle.
Are they not in your book?
– David on a really, really bad day, Psalm 56:8
Statistically speaking, children who develop Diffuse Intrinsic Pontine Glioma, or DIPG, have a 0% chance of surviving for five years after diagnosis. On average, the time between diagnosis and death is nine months.
Our Alice was diagnosed with DIPG on September 23, two days before her fourth birthday, and died eight and a half months later, on June 8th. From a medical perspective, her journey was more or less “textbook.” Diagnosis, radiation, a few happy months of remission, a disappointing if predictable recurrence, death.
From the beginning of her journey, Alice’s name echoed in the halls of heaven as hundreds and even thousands of people begged God to release her from the grip of her cancer. The sheer vastness of the army of God’s people storming the Throne of Grace was baffling to me; the only conclusion I could reach is that God Himself moved His people to pray. So we prayed. Just like God moved us to do. We begged God to do what only He could do. DIPG has no survivors. We had no hope in medicine, but there is always hope, and besides, He inspired us to pray.
And then, without the slightest hint of any supernatural intervention at all, Alice died.
What difference did it make that all those prayers were offered? What sense does it make that God moved His people to pray, only to refuse their requests?
I have wrestled with those questions from the beginning of this ordeal, as perhaps many of you have, and what follows is the train of conclusions I have reached. I hope it will be as encouraging to you as it has been to me.
God is in Control
We begin by recognizing the truth that not only does God know the end of human history as well as the beginning, He has designed it, both in the main and in the details. This leads us to the uncomfortable notion that God wasn’t surprised by Alice’s cancer, but that He had actually ordained it to be so.
Now this is a hard pill to swallow. Especially at first. But as far as I can tell, it’s the only way to make sense of the reality that God not only knows everything that does happen, he knows everything that might happen. Or as theologians say, God knows all things actual and potential. So even if we recoil at the notion that at some level God would actually design the death of little girls into the fabric of history, at least we have to say that he could set into motion events that would prevent it from happening.
If we, quite understandably, want to say that God doesn’t ordain (or design) the time and manner of the worst parts of life and death, we are then left to wonder whether he is unable to alter them to something more favorable, or is for whatever reason unwilling to exercise his infinite ability to do so.
In my experience with Alice, coming to grips with God’s relationship to Alice’s cancer was emotionally and theologically difficult. Actual truth is obnoxiously unchanging, but feelings and experience are a wrecking ball that will assault our constructed edifice of truth and knock loose sloppy or shoddy workmanship, leaving only the really solid stuff. Hurts sometimes, but it’s good in the end.
Perhaps God was as surprised by this as we were. Fine. In that case, He’d naturally be quite willing and eager, at least if the right pressure were applied in the right way, to fix it. But if that is the case, one is left with the feeling that nobody is really at the controls of the world, and tragedies are random and at root, meaningless. Death then is the result of someone responsible for doing something to fix the thing sleeping at the helm.
Perhaps God allowed this thing. He wasn’t a huge fan of the idea, maybe it wasn’t his first choice, but he decided not to fix it, to let it happen anyway. I truly believe that since God created natural law, he seems rather hesitant to violate it. He can make a rock issue rivers of water, axe heads float and dead men come stumbling out of their own grave, but those are historical exceptions, not the rule.
“Allowing” a thing leaves a little taste in the mouth that says, “This isn’t the best thing, but maybe God can salvage a piece of it and get some use out of it.” On the front end of a tragedy, thinking about God allowing a thing lets us maintain the notion that God wouldn’t actively cause us pain, only passively let it happen. But on the back side of it, we’re left to wrestle with a God who doesn’t want bad things to happen to us but doesn’t fix them when they do, and that’s almost nonsensical. After all, it takes more effort for me to press the spacebar as I’m typing this than it would for God to have healed Alice’s DIPG. He didn’t say “no” because He’s too lazy. There must be more to it than this.
So I finally landed squarely where I really began in my thinking before this ordeal began: God ordains even tragedies like this. It was part of His plan from the beginning. But in those early days following diagnosis as I held Alice tightly and wept, my notions of what God is like were shaken, and shaken deeply. What kind of God loves Alice and me with infinite love, possesses infinite foresight and power, but would build this kind of pain and sorrow into our lives?
I spent time with Job, rolling his words around in my head, “The Lord gives and the Lord takes away.” It’s not that God killed Job’s kids. Satan whipped up that windstorm. Still, Job said it was the Lord who took away. Job said many things to God, but spoke not a word to Satan. The devil is, according to Luther, God’s devil. Better to talk to the carpenter than his hammer.
Which brings me back to prayer. If God has ordained these things to happen, why pray about anything? That’s a meaningful question. It’s problematic. God has ordained the end from the beginning and it’s going to happen as designed no matter what, so why pray? One of the best answers, though not entirely satisfactory, is that since God’s plan is perfect, prayer changes me, bringing my imperfect heart into agreement with God’s perfect program. God’s program doesn’t need changing, I do. More about that later.
The issue is further complicated by the numerous, explicit promises in Scripture that God not only hears, but will answer the prayers of His children. Here are a couple of them:
“…whatever you ask in prayer, you will receive, if you have faith.” (Matt 21:22)
“Whatever you ask in my name, this I will do, that the Father may be glorified in the Son.” (John 14:13)
“If you abide in me, and my words abide in you, ask whatever you wish, and it will be done for you.” (John 15:7; I might add that John 15:16 and 16:23 echo the same sentiment, meaning that Jesus repeated this promise no less than four times in the same discourse!)
“Beloved, if our heart does not condemn us, we have confidence before God; and whatever we ask we receive from him, because we keep his commandments and do what pleases him.” (1 John 3:21-22)
I take these verses to mean a couple of important things:
First, God promises to give his people what they ask for. Prayer is more than asking for stuff, but let’s face it – prayer is usually heavily skewed to presenting to God a list of things we want, often things we can’t get for ourselves – like asking for our daily bread, or begging God to cure Alice of her DIPG. Jesus flat out said “ask…” so it’s not improper.
Second, it seems self-evident from these texts that God will do things when people pray that he would not do if they didn’t. He could have said, “Ask, and if what you desire is already part of the plan, you’ll get it.” Or he could have said, “Ask, and if you don’t get what you want, at least you’ll be changed, even if the situation isn’t.” Jesus was of necessity cryptic at times; this doesn’t seem to be one of those times.
I doubt I am the only person who has ever worked through the Wednesday prayer meeting compilation of people with infirmities that needed to be fixed, journeys that needed mercies, or that thing about “watchcare,” remaining completely confident in God’s ability to supernaturally intervene in every case, but rather certain that the outcome in every case would be just about the same whether I prayed or not. Really, the Johnson kids will probably get over the flu same as their heathen neighbors, the Smith’s Christian trip to the beach will likely be made as safely as the O’Malley’s godless trip to Yellowstone, and the great-grandma in the nursing home is probably not moving back to the farm, no matter how much I might pray she would.
As we prayed for Alice to be healed by the hand of God, sometimes the thought ran through my mind, and was occasionally vocalized by someone, that if she died, our prayers would be answered; she would be fully and finally healed. But this was not at all satisfactory to me. We prayed because we didn’t want Alice to die. Dying and being healed in heaven was a default position for her; if that’s what we wanted, we could have not prayed, God would have done nothing, she would very naturally die and be ultimately healed in heaven. To me, the notion that Alice being healed in that sense was an affirmative answer to our prayers was like praying at midnight for a ray of sunshine, then claiming success at sunrise – does that really count?
I must say a word here, because someone will rightly bring it up. The promises God gave us concerning prayer are usually closely accompanied by an “if.” If you abide in me, ask what you want. James says if you ask doubting, you won’t get what you’re looking for. Peter indicates that inconsiderate husbands offer up ineffectual prayers. The Lord will give us the desires of our heart… if we delight ourselves in Him. And very basic but also worth remembering, we must ask in Jesus’ name; answered prayers are distinctly Christian prayers.
It’s almost possible to get God entirely off the hook for answering our prayers by subjecting his promises to the death of a thousand qualifications. There’s just enough fine print surrounding them that perhaps expecting God to answer our prayers is the rough equivalent of expecting Facebook to fulfill its promise to value our privacy – it sounds great on the face of it, but break out a magnifying glass and study the tiny words long enough and you’ll realize it was never going to happen.
I’m not going to try to work through the caveats concerning prayer, only to say they are very much real, and very much needed. If God was nothing more than genie in a black leather-bound bottle granting every short-sighted, somewhat selfish request (which pretty much covers almost everything we ask), we would live in a chaotic and conflicted world driven along, not by the perfect purposes of God, but by the whims of those pushing God’s buttons until He made their desires (many of them good, to be sure) reality.
But I must also say this: among the thousands of people praying for Alice, I firmly believe someone somewhere got it right. Maybe it wasn’t me, but somewhere there must have been a decent husband delighting himself in the Lord praying in obedience to the prompting of the Spirit, begging God to heal Alice. Alice was prayed over, and prayed for by an unusually large number of men whose very calling, their assignment from God is encapsulated by two words, one of which is “prayer.” Alice was prayed for by godly women and young children who exercised the pure and simple faith the young model for the rest of us.
If God makes such wonderful sounding promises to hear and answer our prayers, and if thousands of people take Him at His word and pray, then why didn’t we get what we wanted? The caveats were real, but surely someone must have met them and broke through.
The Root of the Matter
This brings me to the root of the matter, the heart of our prayers for Alice.
Father, heal Alice! That was our prayer. Why did we ask that? Of all the prayers we could have offered, why that one? And did you notice that we organically and almost universally prayed the exact same prayer? I didn’t run into anyone that told me they were praying that Alice’s hair would turn blonde or that she would be able to run faster or lift heavier objects. No, we prayed that the cancer would be taken away, that she would survive.
At the heart of the matter, we prayed for Alice’s happiness. Suffering under a brain tumor is scary, it’s potentially painful, it’s inconvenient, and whatever we may call it, it isn’t fun and it doesn’t create happiness. Sure, we admired her for her happiness in spite of the cancer, but that’s another matter altogether. Cancer was a drag on her happiness. We didn’t want her happiness diminished. We wanted it undiminished and free. We wanted her to be happier free from cancer than the happiness she expressed with it.
For that matter, we prayed for Alice’s healing because we wanted to be happy. We didn’t want to go through the sadness of losing her. This isn’t selfishness as such, any more than it’s selfish to hope one don’t contract poison ivy walking through the woods. We have a burning desire to be happy, and Alice’s tumor threatened her happiness and therefore ours. And we were sad, weren’t we? We are sad, even still. We didn’t want to be sad, or to miss out on the happiness she brought to us. We didn’t want her to be sad, nor for us to feel pain.
Ah, someone will say, she is happy. Our prayers are answered. I still don’t think that counts. After all, not only did we believe she would be happy if she died, we actually believed she would be happier in heaven. But we prayed anyway, because it seemed like the right thing to do. We prayed because we wanted God to make her life and ours happier. We prayed because we wanted God to make her life better, and we really believed that by praying God would hear us and improve her life and ours.
To the ones who will insist in a conversation such as this that we ought to pursue a joy that transcends happiness, unhitched from circumstances, or that we can be simultaneously unhappy and joyful, I will take Alice’s version of contented, transcendent, if at times flickering happiness over the adult version of discontented, frowning, rather unpleasant joy any day. Proper distinctions I love and cherish; unnecessary ones seem to me to be covering something up. There are reasons for both why we prayed for her happiness by appealing to God to alter the circumstance and why we marveled at her happiness in spite of the circumstances. It seems to me however that heaven will not contain unpleasant circumstances whereby we may authenticate our joy by being simultaneously unhappy and joyful.
Changing the Way We Prayed the Same Thing
After radiation, we rejoiced that Alice’s tumor had disappeared. We wondered whether God had heard our prayers and answered them just like we asked. It seemed a thin hope, but it was hopeful. Cancer was gone; perhaps it wouldn’t come back?
Then it did come back. And when it came back, with a particularly agressive vengeance, I noticed a shift in the way I prayed and the way others prayed. This too wasn’t orchestrated, it just happened. We began to pray not so much that God would heal her, though we still did, but primarily that He would take her gently. It’s a strange thing to beg God to heal your child one week and beg Him to take her away the next. But really, it was the same prayer. It was a prayer that God would hear us and improve her happiness. Maybe God would hear our prayers and have mercy on her; maybe she really would lie down to sleep and never wake up. That didn’t seem so bad.
So we changed the way we prayed the same thing: Father, improve Alice’s lot; give her increased happiness, even in death.
Truth be told, I’m not sure that prayer was answered, certainly not like I wanted it to be. The days leading up to June 8 contain some of the darkest hours of my life, and the moments I most felt abandoned or even betrayed by God. I begged Him to take her, to spare her from the agony she was going through, and he wouldn’t do it. Increase her happiness, Lord!
Praying for Alice changed me, and perhaps it has changed some of you. Back to what I said at the beginning about prayer changing the one who prays rather than God’s perfect program, I found that wrestling with God taught me a great many things about God that I didn’t know, and a great many things about myself that I didn’t like. I learned early on to trust that God’s plan was the best, I learned how difficult but ultimately sweet it is to know that the hardest things in life are “momentary” and “light,” but they produce a glory that is “eternal” and “weighty.”
I learned that God is far more willing than I had imagined for His children, even the smallest and weakest of them, to endure intense suffering. And I came to really believe that one day it will be worth it all, that looking back we will feel incredibly grateful that God planned this journey in exactly this way.
Through this process, I hope I’ve become a better Dad, a more faithful Christian, developed a greater appreciation for God’s wisdom, a deeper hatred for my own sin, an increased affection for the life awaiting me on the other side of my own grave, and a wiser approach to life on this side. I’ve learned to better integrate the God who resided so well in my private, religious life where He lived in the relative safety and obscurity of abstract thought into the affairs of public, daily, ordinary life – such that even eating and drinking might truly be done to the glory of God.
We have been challenged to learn to trust in the goodness of a God who doesn’t do what we would do if we were him. We have been challenged to really believe in heaven, and not just because we wanted happy thoughts, but because we really want to know where Alice is so we can go see her again. I miss her and want to hold her again. Really badly. Like David, I say she can’t come to me, but I will go to her!
But this is not entirely satisfactory either. While our prayers did include our own desire to avoid being sad, we weren’t primarily praying for ourselves. We weren’t praying that we would grow in faith, or grow in holiness. We weren’t praying that our vision of God would be expanded. These things were pleasant side-effects, but we were praying for Alice, after all. We were praying that her lot would be improved, that our prayers would result in her happiness.
It seemed to me then to stop at this point in my thinking, despite all these good things, God’s promises remain unfulfilled; we really didn’t get what we asked for yet.
I titled this “The Vault of Unanswered Prayers.” “Put my tears in a bottle,” David said. Don’t forget that I cried them, Lord. Don’t forget that we prayed these prayers Lord, prayers you promised to answer, but didn’t.
When I was a little boy in Sunday School, I was taught that God gave one of three answers to every prayer: Yes, No, or Later. “Yes” is what we want, and “Later” is a delayed yes or a temporary no, sort of a compromise position. But I don’t recall Jesus saying God would tell us “no.” Quite the contrary. At best, it seems to me that “No” isn’t an answer so much as an aborted, ineffectual prayer that dies on one of the necessary caveats attending God’s promises.
There are two famous New Testament cases where God apparently said “no” to good and proper prayer. One was Jesus in the garden – “if it is possible, remove this cup from Me.” The other was the Apostle Paul – “Take away this thorn in my flesh!” Both of these were prayers for increased happiness (through, I might add, altered circumstances). Jesus’ cross was torturously painful, not to mention humiliating. Paul’s thorn made ministry harder than it would have been without it. The pain was a drag on their desired happiness.
Jesus prayed, “Not my will, yours be done.” That could mean Jesus is just saying the Father is the boss, and he’ll sigh and accept the verdict. But it could also mean that Jesus trust that the Father really wants Him to be happy, and his path to greatest happiness was through the greatest pain. After all, on the other side of the cross, Jesus received an increased eternal glory he would not have possessed apart from the suffering he endured. He prayed for happiness in a temporal sense, God gave it to him in an eternal sense.
Paul only asked three times to have his problem fixed. Shoot, I prayed a hundred times for Alice’s deal. But God told Paul that his thorn, his pain, the drag on his happiness, spared him spiritual shipwreck – if not for that thorn, he would have become an egomaniacal headcase and ruined his ministry. With the thorn, he finished his life saying, “There is laid up for me a crown of righteousness…” He prayed for temporal happiness, and was rewarded with an increased eternal happiness he would not have otherwise had.
So here is how I understand our prayers for Alice finally answered. We prayed for her increased happiness, an improvement in her circumstances that she would not have received if we didn’t pray. And as we prayed, God used her cancer and our utter helplessness to draw us to Himself and draw us to each other; she became a tool in God’s hands to make some people better Christians, and perhaps to make some people Christians in the first place. These are things that would not have happened if Alice didn’t get DIPG, they wouldn’t have happened if she was immediately healed, and they wouldn’t have happened if we hadn’t wrestled with God in prayer first for her healing then for her death, and finally coming to the difficult but inescapable conclusion that this is the path of greatest happiness for her, and her happiness is increased because of how much she did for us as she walked it.
Heaven will be eternally sweeter for Alice because we prayed for her improved happiness, and in our praying for Alice God did mighty things in our hearts and lives. She has been used by God to do things in our own lives that will improve our lives for all eternity, and it would be improper for God not to eternally reward her for her part. We prayed, Alice’s happiness waned. We prayed again, wrestling to gain a bigger understanding of God, and Alice died. And we wrestled again, our faith growing and our hearts becoming increasingly disillusioned with this fallen world and anxious to experience the perfection of the next. Alice in some sense brought heaven nearer to us and made God clearer to us. Until we wrestled with the difficult and seemingly unpleasant aspects of who God is, we couldn’t really appreciate the glorious, gracious aspects of who He is either. And when all is said and done, Alice will be honored as God’s chosen servant to turn our hearts in profoundly deep and sweet childlike trust to the wisdom of the God who doesn’t always do as we wish, but always what is best. As I understand it, that means heaven will be sweeter, richer, happier for Alice than if we never bothered to pray, never bothered to wrestle with God through these hard things, never allowed God the chance to stretch and grow us as we plead, with apparent futility it seemed, for Alice’s happiness.
The vault of unanswered prayers for Alice’s increased happiness will be emptied and gloriously answered, just as promised. Every prayer we offered up on her behalf will be fully, gladly, and eternally answered by our doting, all wise, magnificently generous Father who will escalate her happiness into realms we, and she, never could have imagined. Is this just the pipe dreams of a Dad who doesn’t want his friends to feel like they wasted their time and effort praying for his daughter, doesn’t want her life to be considered incomplete or less than significant, or her untimely death to have been an avoidable, unfortunate mistake? God will be the judge of that. But I don’t think so. I hope it’s an expression of a faith that He kindly used our very own Alice to form in me.
my apologies for this being so verbose. It’s difficult for me to satisfactorily squish months of thinking into a short space. Every time I “edited” it, it grew by a couple paragraphs. So I finally gave up.
top photo was taken at the ER during our first trip to Children’s Hospital, the night before the MRI which revealed Alice’s tumor.