It’s amazing where your mind goes in the midst of suffering. When bad things happen, most of us will look for someone to blame. It’s my fault. It’s your fault. It’s God’s fault. We shake our fists at the sky and cry out, like Job, “I’m innocent! This shouldn’t be happening to me!” Or when everyone turns against us, we complain like Jeremiah, “I know that you’re righteous, God, but your justice leaves a lot to be desired!” Why is this happening to me? I’m one of the good guys! I’m on your side! Like David, we lament our own condition and look with envy upon the “wicked,” for whom nothing ever seems to go wrong.

My wife and I have certainly run the gamut when it comes to this kind of thinking. For a while, I thought that Zeke’s disease was God’s punishment for my sin. In my more self-righteous moments I would scream at him, “Why are you doing this to me?! What have I done to deserve this?!” We also went through a period where we thought that his disease was a result of spiritual attack. At this point, we’ve accepted that his disease is simply the result of living in a world that is broken.

I’ve discovered just how important it is to maintain a healthy perspective of my suffering and trials while in the midst of them. If my mind is not right, my emotions quickly follow. Believing “holy lies” like God is in control, God causes all things, or God will never give you more than you can handle is mentally, emotionally, and spiritually destructive. When suffering strikes, it’s easy to believe these lies because we are desperate to believe that someone (God, for instance) is controlling or sending all the chaos, evil, and pain. It may be comforting, but it’s not true because God is not the author of evil. I can’t stress this point enough. God is not the author of evil.

In order to find a healthy perspective in the midst of overwhelming hardship, I’ve had to understand that there are four primary reasons for suffering: discipleship, discipline, disengagement, and disaster. The four disses. (See what I did there?) While I typically hate alliteration, this scheme seemed to work pretty well, so against my better judgment I’m sticking with it!

Discipleship

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The New Testament promises suffering. The verses are too numerous to recount here, but the authors of the New Testament seemed to assume that suffering and discipleship go hand-in-hand. The question for us is how to discern which suffering is intended for discipleship.

I believe that all suffering, appropriately understood and faithfully persevered through, will make us more like Jesus. In that sense, all suffering creates the opportunity for discipleship. But there is a certain kind of suffering that is specifically intended as an act of discipleship. This is the suffering that comes from persecution on account of our faith in Jesus.

This is the paradigm of suffering found in the early church. Sure, people suffered then like we do today (in disease, loss of loved ones, etc.), but the defining trial of their faith was the persecution they would have experienced on account of following Jesus. This type of suffering would force them to choose between Jesus and the world, and stories abound of the faithfulness of the early Christians who chose Jesus despite all kinds of torture. The Church is built upon the blood of the early martyrs. Persecution is pretty straightforward, and the appropriate response is obvious, so I won’t spend any more time on this.

Discipline

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There is another kind of suffering that can enter a believer’s life, but this is not to prove the genuineness of his faith. Rather, it refines him by way of discipline. Hebrews 12:6 reminds us that God disciplines those he loves, and the verse that follows exhorts us to “endure hardship as discipline.”

But there is a more punitive form of suffering that can happen in a believer’s life, and that is when we suffer for committing sin. Discipline of this kind could look like the loss of a position of leadership in the church, or even expulsion from the congregation itself. This sort of suffering is the direct result of our sin, and it’s redemptive purpose is to lead us to repentance, which can then result in restoration.

Unless we are blinded by our own self-righteousness or sense of victimization, we will know when we are being disciplined by God because we will have lost our place in the faith community. In 1 Corinthians 5, Paul commands the church to “expel the immoral brother.” In Matthew 18, Jesus tells the disciples to treat an unrepentant member of the church as though they did not belong to the church. The point of this is restoration, but that must be preceded by repentance. If you are under God’s discipline, pray that you would have the humility to see past your self-righteousness or sense of victimization so that you can repent of your sin.

While all suffering can function to make us more like Jesus (discipleship), not all suffering is the result of punitive discipline. This is important to grasp, because as I said above, in the midst of a difficult trial we often search for someone to blame, and that often means blaming ourselves. Like Job’s so-called friends, we convince ourselves that our sin has brought about this suffering. But this is not true. If you have not lost your place in the faith community, then your suffering is not a result of God’s punitive discipline.

Zeke’s disease is not God’s punishment for my or Breena’s sin. The punishment for our sin has already been paid. 9/11 was not God’s punishment on America for the sin of the people. The punishment for their sin has already been paid. God does not discipline us by killing others or inflicting our loved ones with diseases. Zeke is not dying for my sins; Jesus already did that. To call this form of suffering “discipline” or “punishment for sin” is to say that the sacrifice of Jesus on the cross was insufficient to pay for the sins of humanity.

Disengagement

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Suffering may also befall us when we stubbornly pursue our own path and God has finally had enough, sighing sadly, “Fine then. Have it your way.” It is divine disengagement. Romans 1 tells of how God gives people over to the desires of their hearts, thereby removing any divine protection they might otherwise enjoy. This is what happens when we demand life on our terms, refusing to accept any of God’s attempts at discipline or calls for repentance.

Think of all the suffering in this world caused by our collective stubborn refusal to, for example, rein in our sexual desires. The physical damage caused by STDs can be devastating. The emotional (and sometimes physical) trauma of abortion is criminally underreported in our media. Divorce caused by adultery has devastated millions of adults and their children.

Sadly, this type of suffering is largely avoidable. Adultery is not inevitable; it is a choice. The same is true of drug abuse and other types of addiction. You could even look at the recent economic troubles in the US as suffering because of divine disengagement. We stubbornly pursued what our greedy hearts desired, and the bubble burst with catastrophic results for many.

Disaster

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This last kind of suffering is probably the most common, and doesn’t really have an explanation. Horrible things just happen in this world. Tsunamis. Wars. Cancer. Batten disease. This is just the crap of life, and any attempt to make God responsible (whether through a faithful appeal to God’s sovereignty or a skeptical appeal to God’s weakness/wickedness) rings hollow. We may not like it, but more often than not, there’s no one that we can hold accountable for the suffering of our lives. Disaster happens.

When disaster strikes, our first instinct is to ask, “Who is at fault?” But we need to train ourselves to ask two different questions first: “How is God redeeming (or going to redeem) this?”, and “How am I going to respond to this?”

God loves to work in the midst of disaster, redeeming it in ways that we could have never imagined. This redemption, however, is often contingent on the softness of our own hearts and our willingness to come alongside his redemptive work in the midst of our suffering. Knowing that God is present in your suffering, working to redeem it, will help you to keep a soft heart and a humble attitude toward him. Rather than sinking into playing the blame game, train your eyes to see God at work and throw yourself into that.

Our little Zekey is probably going to die at a very young age, but I’m not going to blame God for this. He didn’t create Batten disease. But he is redeeming it, and in ways that I could have never imagined. I have resolved to be a vehicle for God’s redemption of Zeke’s disease. Not only is that what’s best for me and God’s kingdom, it’s what’s best for Zeke. Imagine what his life would be like if his father was relentlessly bitter of this lot in life. Bitterness undermines God’s incredible work of redeeming disaster. I will never see the work of God in my life or in Zeke’s if I live angrily and embittered; but the stories of God’s faithfulness belong to those who persevere through suffering and come alongside God’s redemptive activity.

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My hope is that having these categories for suffering will help you to keep a healthy perspective in the midst of your own trials and hardships. I’d like to add one final thought: Suffering is not something to be avoided, but rather an overwhelming opportunity to get close to God. 

Zeke has fallen off a cliff.

For those who haven’t read my wife’s account of what has happened to our son Ezekiel in the past few days, you can read it here. He has significantly regressed since getting his feeding tube, and death seems far more imminent today than it did just two weeks ago. His body is constantly twitching and jerking in large, involuntary movements that steal his ability to rest or be comfortable. These movements are not the result of seizure activity, but of something much deeper, much more insidious, going on within his brain. The Batten Disease from which he is dying seems to be accelerating. Most children with his form of the neurological disorder die between the ages of 8 and 12. We suspect he’ll be gone within the next six months.

Breena and I have been faithfully praying for Zeke’s healing for over a year now. I know that many of those who read this blog, and my wife’s as well, are joining us in this prayer. As are other friends, family, friends of friends, and complete strangers. There are, quite literally, thousands of people all over the world that are praying for Zeke and for us. Our new church family, Grace Church in Toledo, has also been persistent in prayer for Zeke. After the service yesterday, Breena and I took Zeke forward for prayer. As Ralph, one of the elders, was praying for him, many others joined in and engulfed us in their prayers and tears. It was a very emotional moment for both Breena and me.

But despite all these prayers, Zeke’s condition has worsened. The picture on the left was taken less than a month ago, but the Zeke you see there is nothing like the Zeke that is shaking in Breena’s arms right now.  This has been a source of deep frustration for me. After all, Jesus said in John 14:13-14, “And I will do whatever you ask in my name, so that the Father may be glorified in the Son. You may ask me for anything in my name, and I will do it.” I have asked in his name, and yet he has not done it. Thousands have asked in his name, but still he has not done it. In fact, the silence we have heard from heaven regarding Zeke’s healing has been unbearable. We pray, and…nothing. No word from the Lord. No sense from heaven. No comfort of the soul or warming of the heart. Not even a sense that he’s going to die.

To make matters worse, we recently started praying that God would have mercy on Zeke, and if that meant taking him home, then we could accept that. Just please don’t drag out his suffering. Shortly after we started praying this way he took this major turn for the worse. It seems as though God has been ignoring all of our prayers for his healing, but he jumped all over our prayer for a merciful death. What am I supposed to make of this?

Whether God’s mercy is responsible for Zeke’s downturn or not I don’t know, but I do believe in the goodness of God, and in his kindness. God is not killing Zeke. In fact, I believe it is God’s will that Zeke be healed, but I also know that God’s will is not always done here on earth. (Why else would Jesus tell us to pray that it would be done here just like in heaven?) But why this unbearable silence? I can hear him speak to me about other things, but not about my son. Is there something wrong with me? Do I lack faith? Is my prayer closet inappropriately adorned? Or could there be something much deeper going on here?

Matthew 26:36-46 tells the story of Jesus’ prayer in Gethsemane. It was the night before he was to be crucified, and he was in deep distress. He told his disciples, “My soul is overwhelmed with sorrow to the point of death.” His instinct is to pray, so he does. Three times he asks his Father to let this “cup,” meaning his crucifixion and all that goes with it, pass by him. Let there be some other way! What was the Father’s reply? We don’t know. So far as we know, the Father said nothing, because nothing is recorded in Scripture. Another unbearable silence.

Many years later, the apostle Paul wrote a letter to a church in Philippi, in which he wrote “I want to know Christ—yes, to know the power of his resurrection and participation in his sufferings, becoming like him in his death, and so, somehow, attaining to the resurrection from the dead.” Did you catch that? Paul wanted to participate in the sufferings of Jesus so that he could become like him in his death and then be like him in his resurrection. The core suffering that Jesus experienced wasn’t the physical pain of being crucified, though I imagine the pain of that was overwhelming. No, the worst of Jesus’ suffering was the cosmic reality behind his anguished cry, “My God! My God! Why have you forsaken me!”

The Father and the Son [and the Spirit], together as one beyond time, were here, at the cross, torn asunder as Jesus became the sacrifice for human sin and the object of God’s wrath against that sin. The Trinity was broken. This is the suffering of Jesus, and it is a depth of suffering that you and I can never fathom or experience. But we catch glimpses of it. We feel the bee-sting prick of the sword-slash of Godforsakenness when we suffer and God is silent. This is when we begin to know Jesus in suffering.

To know Jesus in suffering. Have you ever longed for that? Probably not. I know I haven’t. I’ve always wanted to skip the whole crucifixion part and just go straight to the resurrection section. But there can be no resurrection without crucifixion. If suffering is central to who Jesus is–and Paul seemed to think that it was–then we must participate in the suffering of Jesus in order to know him. That, of course, doesn’t require us to be literally crucified. But it does mean that there will come times in our lives when God is distant, silent, or seems to have rejected us when we need him most. It is in those moments that we participate in the suffering of Jesus. These are the depths of sharing in the suffering of Jesus, becoming like him in his Godforsaken death, that lead to the heights of knowing the power of his resurrection.

My heart is broken for Zeke, but I’m not afraid for him. I know what, and who, awaits him. Though I pray and experience the silence of God, I can rely on the hope that I have learned from God’s voice over the past 30 years of my life. I know that resurrection awaits both me and Zeke, and that before either of us gets there, we’ll have known Jesus in suffering in our own unique ways. Maybe it’s all too ironic, but in this way, the unbearable silence of God is making room for the comforting word of God.

The subject of God’s will has come up quite a bit around here lately. Given Zeke’s condition, Breena and I both have many questions about the subject. What is God’s will regarding Zeke? Is it to heal him? Is it to let him suffer and die?

Perhaps you have similar questions about the difficult situations facing you. Was it God’s will that your parents got divorced? Was it God’s will that you lost your job? Is it God’s will to make an absolute laughingstock of the Cleveland Browns organization and the city of Cleveland in general? (I believe that all true Browns’ fans would answer that last question with a resounding Yes!)

So what are we talking about when we talk about God’s will? Most of us, I believe, think of God’s will in terms of his plan or purpose for our life, our church, the world, etc. God’s will is what God wants to happen in a given situation. For example, when faced with a major life decision like choosing a career path, most of us tend to believe that there is one path that corresponds to God’s will, and all the other paths lie outside of his will. So we pray in hopes of hearing which path it is he wants us to take.

The issue gets a little more complex, of course, when we move from talking about the choices we make to the circumstances that are thrust upon us. So I want to pose the question as bluntly as possible: Is it God’s will that my son Ezekiel have Batten Disease, and that he suffer every minute of every day over several years before he ultimately dies? Is that what God wants? Is that his plan for Zeke’s life and for ours?

Perhaps I could pose the question a bit differently. Does everything happen according to God’s will? In other words, is every event that occurs on earth God’s will? Or are there things that happen on earth that are outside of the will of God?

There are many Scriptures that would help illuminate this question, but I want to turn to one that is so familiar it often gets forgotten. It is Matthew 6:10, from the Lord’s Prayer. “Your kingdom come, your will be done, on earth as it is in heaven.” Jesus teaches us to pray that God’s will would be done here on earth just as it is always done in heaven. If everything that happens is God’s will, why would Jesus teach us to pray this prayer? You only pray for what you do not have. Clearly, in Jesus’ mind at least, God’s will is not always done on earth. In fact, let me be so bold as to say that God’s will rarely happens in this world.

So, what then, is God’s will? I believe that God’s will is a vector. A vector is a quantity that has both direction and magnitude. The magnitude of God’s will is salvation, and the direction of God’s will is the new heavens and new earth. When Jesus and the authors of the New Testament talk about God’s will, they almost always talk about it in the context of salvation. And the aim of God’s will, or what he is up to here on the earth, is directed toward the end, when he will make all things new, and fully and finally dwell with humanity.

If that is true, then what is God’s will for Zeke? First of all, I believe it is God’s will for Zeke to be saved and to live with him forever. Secondly, I believe that it is God’s will for Zeke to be healed here on the earth. However, and here’s where it can get difficult, just because it is God’s will for something to happen does not mean that it is going to happen. 2 Peter 3:9 says that God wants everyone to come to repentance, but clearly that has not happened and will not happen. So it is with many other things. I don’t think that God wants any child to die, and yet thousands of kids die all over the world each day. Part of the horror and mystery of living in a fallen world is that God’s will is not always done here as it is in heaven. Which is why Jesus taught us to pray, “Your kingdom come, your will be done, on earth as it is in heaven.”

You might say that this makes God weak. Perhaps. But, in the light of the cross, who are we to say that weakness is such a bad thing, particularly when compared with what the world considers strength? The world wants a God who is in control, and skeptics refuse to believe in God because the evil and suffering of the world testify that God is not in control. But I believe that God does not want to be in control. The direction of God’s will is not to create sinless puppets who are easily manipulated, but to purify a bride fit for his Son and raise up a kingdom of priests who are fully qualified, by the nature of their character and the testimony of what they have overcome in the power of the Spirit, to reign over creation. God is out to make us more human, not less.

Which is to say, it’s all a mystery. Or at least the middle part is. Which is why we live by, and are saved through, faith. In the end, all will be revealed and we will live by sight, seeing God face-to-face in a new world where his will is always done by everyone and everything. But until then, we plod through the muddled middle, now suffering, now weeping, now praying: “Your kingdom come, your will be done, on earth as it is in heaven.”

My church used to go camping. When I was little, probably just 8 years old, our entire church would drive out to the country, to a beautiful stretch of land owned by a sister church, and we would camp out.

For a kid who grew up in the inner city, camping was quite the experience. There are several things that I can still remember vividly: the height of the trees, the morning fog, the smell of the ashes and embers left smoking from the previous night’s fire. And the stars. So many stars.

I knew that our solar system was in a galaxy called the Milky Way, but I didn’t know that you could actually see the Milky Way from our planet. My view was always obstructed by the city lights. The sky of my childhood was mostly red, except for when we went camping. There, away from the buzzing street lamps and urban light pollution, I could finally see the night sky that my ancestors saw. I was filled with wonder.

How far away were these stars? Did they have planets, too? Were they bigger and brighter than our sun? My imagination was kindled by the heavenly lights, which, even though they don’t appear to move, put on a far better show than anything I could watch on television.

C.S. Lewis had this same sort of experience with the countryside of his native Ireland. He referred to the feelings that nature stirred up within him as Joy. It was as though something was calling to him from beyond the created order; a voice, perhaps, or a distant memory of someplace that he had never been but for which his heart deeply longed.

I have come to believe that I am haunted by the memory of something that I have never experienced, but know beyond reason to be true. We are all haunted by the memory of a place where everything was good, true, and beautiful; a place untainted by the tragedy and suffering wrought everywhere by evil. There was a time before the world bent in on itself, unleashing this torrent of death. That place is Eden, and that time is the beginning. Like a specter haunting its earthly home, Eden wanders the hallways of our imaginations.

Our hearts know that things are not as they ought to be. Something has gone horribly wrong, and as a result Eden’s gates have been shut and locked from the inside. We have been expelled, and there can be no going back, at least not by the old way. We have lost Eden, and our hearts won’t let us forget it. This memory has been burned into the human imagination.

•••••

I sit on the beach, holding my son as he is slowly dying of a rare and fatal neurological disorder, and I’m longing for a place that we lost. I’m regretting the sin we committed that let things like Batten Disease enter the gene pool. When we lost Eden, we gained death—death in all its forms and by all its means. Even the slow, crippling death of a child.

I want to run, to run back to Eden and throw open its gates. I want to carry my son to the Tree of Life, to lay him down under its shade and cover him in its leaves. I want to run with him through fields of grass untainted by the foolishness of humanity and build him a home in a land without idols. I want to go back to the place where we talked with God face to face, so that the Great [Re]Creator might breathe on him and HE WOULD LIVE!

But I can’t. There is no going back. The gates of Eden are shuttered forever. The Tree is gone. Eden is lost.

•••••

Every wistful desire, every indescribable longing—what C.S. Lewis called “Joy”—is misdirection. Our hearts ache for what we have lost and cannot regain. This is why all natural beauty is tinged with sorrow. A sunrise over the ocean fills us with awe but leaves us strangely empty. So, too, with a storm over the mountains, or the mist upon the rolling green hills on an early Irish morning. The earth reminds us of Eden, so we retreat to cities, congregating amidst the unnaturally straight lines of the structures we build, structures designed not to protect our stuff or our lives, but to protect our hearts from the pain of the memory of Eden’s loss.

We have to go back and we cannot go back. We must press on. The only way to go is forward, to hope that somehow, we will stumble our way into Eden again, or perhaps into something fuller and better. Perhaps, even, someone will come to us to show the way. Would that God may light the way again, to throw open the gate, to sound the trumpet, proclaiming Eden open once more. Would that he might come to us, to speak to us, to invite us, to know us, to suffer with us, and perhaps, dare I say it, to die with us. To participate in this Unmaking which we have made. To capture it. To engulf it. To swallow it up forever.

Yes, this must be the way. Not that we might find Eden again by luck or adventure or triumph, but that the One who inhabits the Original Eden, the Greater Eden, might come to us and speak to us in our exile. That he might bear our diseases and take up our infirmities. That he might even carry the burden of our sins, and in doing so, woo us out of our idolatry.

Eden, after all, is only Eden because of the One who abides there, who met us there, who spoke with us face to face and walked with us in the cool of the day. The sting of losing Eden is not that we have lost the beauty of trees and mountains and rivers–those we still have aplenty–but that we have lost the beauty of knowing God. The power of the Tree of Life is not found in the fruit or the leaves, but in the arms of the One who prunes it.

•••••

Oh, my heart, be wooed! Be wooed from your idolatry and lusts and deception and turn your face toward the One who is worthy, who is good, who is power wrapped in humility.

Oh, my heart, be wooed! Be wooed by the One who can heal with a touch and raise the dead with a word. Oh, foolish heart, turn yourself to the One who turned to you, who looked for you in the darkness of this land of exile, who suffered for you and all your foolish and idolatrous brothers and sisters. Turn your face to the One who died, and in dying forgave all your sins; who rose again, and in rising swallowed up death forever.

Oh, my heart, be wooed! Be wooed by the Bridegroom who pursues you with the ferocity of the purest agape. Be wooed, oh my heart, be wooed, because what you have lost in Eden you have gained a hundredfold in Jesus.

•••••

It’s easy for me to lose sight of this, to think about what I’ve lost in Eden, what I could lose with Zeke, rather than focus on what I’ve gained in Jesus. Eden haunts me, but Jesus is with me. No, it doesn’t always feel that way, but there is a reality, a truth, that exists independently of what I feel or perceive, and at the center of that reality, defining it, incarnating it, animating it, is Jesus.

Jesus offers you and me and all the rest of us far more than Eden ever could. Eden was a place from which God came and went; Jesus is a person, a man, who is God. He was God, is God, and will always be God. We know God through him, in him, and because of him. We see what God looks like, acts like, talks like, and loves like in Jesus. Everything about Jesus is God. There is nothing about Jesus that is not God.

But sometimes my foolish and shallow heart is drawn to pretty things that shine and glow. My desires turn toward idols, toward that which promises what it cannot deliver. I try to find Joy in created things rather than in the Creator, the Sustainer, the Redeemer. The Joy is not in the mountains; the Joy is in the One who treads the mountains. The Joy is not in the ocean; the Joy is in the One who filled the Ocean and sees its depths.

All that we have lost in Eden, and more, is found in Jesus. But he isn’t flashy. He isn’t urgent. He doesn’t shine or glow. He is patient. He is strong. He is brave. He is power wrapped in humility. He is agape love clothed in tenderness and strength and empathy and holiness. He loves and he loves and he loves and he haunts your heart, wooing you, calling to you. “Return to me! I can give you Eden and so much more! I can give you myself, perfect goodness and purest light and strongest love.” In losing Eden, do not lose yourself. Find yourself in the One who passed through death to find you.

Ezekiel is calm now, his screaming abated by a dose of valium, a rescue medicine all too often administered these days. His eyes open and close lazily as he passes between waking and sleeping, looking for me, for an anchor, in this strange vacation-house bedroom. We abandoned all thought of swimming in the community pool when the seizures overwhelmed his body, shaking him from head to toe like the last autumn leaf twisting in the cold breeze. He screamed, and screamed, and screamed as I carried him from the pool to the house.

Sedated, he is laying on our bed staring blankly at me. Like Elijah and the widow’s dead son, I stretch myself out over his body, kissing his forehead. He clumsily reaches for my ears, gently grabbing hold of one while failing to find the other. I pray to God, “Spare my son. Heal my son. Rewrite his DNA. Repair these broken genes.” For now, my prayers are met with silence, both from Ezekiel and from the Lord.

My son has Batten’s Disease, which was forged in the darkest laboratory of hell’s genetic warfare division, concocted by the most brilliant and diabolical mind in the underworld. Batten’s is a fatal, progressive, genetic, neurological disorder that attacks the brain of small children, unmaking them from the inside. Over the course of several years, Batten’s will steal a child’s motor skills, speech, sight, hearing, thought, chewing, and breathing. Before it finally, if not mercifully, takes his life, Batten’s will completely break the child’s brain, leaving him in a permanent vegetative state. There is no cure. Batten’s is UnCreation. If there is anything that fulfills the purposes of Evil, it is this disease that is destroying my son.

I cannot describe to you what it is like to look at your young child in the throes of a crippling and degenerative disease and know that, unless God intervenes, this is the healthiest he will be for the rest of his life. All of his faculties are abandoning him. I am overwhelmed by the knowledge that he will eventually be both blind and deaf. Will he be terrified by the darkness when he can no longer see? What will we do for him when he can only lay there helplessly, unable to see, hear, or communicate? My son is dying, and I am full of fear.

 Ezekiel is being uncreated by a satanic disease that, through the reception of two recessive genes from Breena and me, is rooted deep within his genetic structure. In that sense, it is as much a part of him as his brown eyes and hair. So when we pray, we do so with the knowledge that we are, in a way, asking God to turn his brown eyes blue. We are praying for the impossible. We are asking God to rewrite Zeke’s DNA, to repair and restore his genetic code. We are asking God to work on a microscopic scale.

Fortunately, we have a God who turned the molecular structure of water into wine. We have a God who restored the genetic code of a man born blind. We have a God who rewrote the DNA of those crippled from birth.

And so we pray, begging God to intersect his power with the profound need of our son. If Ezekiel is to live, he must literally be changed at the deepest possible level. If he is to survive, God must recreate what the devil, through this disease, has uncreated. Breena and I are convinced that this is not too big a thing for God to do.

But God has not healed him yet. We have been forced to endure the grief of his slow death this far, and we can only hope and pray that we will not have to endure it until the bitter end. I don’t know why he hasn’t given us what we have so desperately asked of him. I don’t know why my son continues to die with slow but agonizing finality right before my eyes, despite the prayers of hundreds of people all over the world.

I wish that my hands were holy enough to drive the evil out of him, but everyday I walk the line between faith and fear. Is God silent? Or are my ears deaf to his voice? Is he ignoring me? Or is he doing far more than I can see or imagine? Fear is the result of leaning into questions for which there are no satisfying answers. I simply don’t know if Zeke is going to live or die.

 When I contemplate the power of God, I have hope that Zeke’s flesh will be healed and he will be set right in this life. There is no doubt in my mind that the God that rose Jesus from the dead is able to conquer this disease in my son. But this knowledge of the power of God cuts both ways: I know that God can, but I don’t know if he will. Ultimately, I find no rest, no peace for my mind or soul, no lasting hope in the contemplation of the power of God alone. He is, after all, God, and he is free and able to do whatsoever he chooses. He doesn’t have to do what I want him to do.

Where, then, can my soul find rest in the midst of all this suffering? In this: Jesus is the God who has suffered. I follow the God who knows, intimately, personally, and experientially, what it is to suffer as a human being. The God of Christianity is the only God who can say to a bereaved parent, “I, too, have lost a son.” When I contemplate the suffering of God, I have faith that my God understands what I’m going through because he himself has endured the grief of loss and death. In suffering, my love for God grows because now I, too, understand something of what he endured at the cross. Not only this, but my heart is full of hope that, come what may, God is somehow making all things new, including my son.

When I contemplate the suffering of God, I have the confidence to ask God to change his mind about Ezekiel. If God has planned, for whatever reason, to take Zeke at an early age, I know that I can make this audacious request of the God who empathizes with us: “Please reconsider. Please don’t take my son.” Like Jesus in the garden that dark night, I am asking that, if there be any other way, let this cup pass. But I must also pray, like Jesus my Lord prayed, “yet not my will, but your will be done.”

I can find rest in the prayer that God’s will would be done instead of my own, not because I know God is all-powerful, and not even because I know that God is all-loving, but because I know that God has willingly chosen to suffer and die. I can trust God because he is all-understanding, all-empathic.

I wouldn’t make it if I didn’t have Jesus. And I don’t mean having Jesus in some casual, half way. I mean fully. There is no greater comfort than to know the suffering God in the midst of our suffering, and the only way to have that comfort is to commit yourself fully to God. I don’t know why anyone would refuse Jesus. You might say, “Won’t you be angry at God if Zeke dies?” I might. But where, then, would I turn? What other god could know my pain? What other god could empathize with me in the midst of loss? What other god has tasted death and come out the other side so that I can be free? Only Jesus. And if Jesus has done all this, then what could any other god possibly have to offer?