Staying out of prison is one of my top priorities. I’m very careful to obey every law (with the possible exception of the speed limit) because I desperately want to avoid going to jail. The Apostle Paul, on the other hand, seemed to enjoy going to prison. In fact, some of his best work, including the letter of Colossians, was done while incarcerated.

Paul saw the suffering of his imprisonment as an occasion to rejoice. That seems like an odd response to most of us, to be sure, but Paul viewed his suffering as an opportunity to participate in the afflictions of Christ. Because Jesus suffered, Paul reasoned, our own suffering brings us closer to him. Not only that, but when we suffer well, we become an encouragement to the church. But what does it look like to suffer well?

First of all, we must be honest. While we cannot allow our feelings to shape reality, we must be able to name our true emotions with honesty and integrity. It’s okay to not be okay. It is spiritually destructive to try to fake your way through hardships, and it robs others of the opportunity to learn from you how to suffer well. God is out to redeem every difficult circumstance we experience, but he cannot redeem the circumstances about which we are dishonest.

Secondly, we must have hope. Another way of thinking about this is “living with the end in mind.” If we live with an eye toward God’s new creation (the mind-blowing, awe-inspiring, totally redeemed world and humanity he is going to unveil in the final days), we will be able to endure the suffering we experience today. The resurrection of Jesus and the promise of new creation give us hope to overcome the disappointment and loss we live through today.

Finally, we must rejoice. This is where it gets hard. The journey from honesty to hope to rejoicing gets complicated because rejoicing is always out loud. This is an audible response to the hope that lives within us. You may not always feel like rejoicing. In fact, when you are suffering, you will probably never feel like rejoicing. But the more you rejoice, the less power your circumstances will have over you. As you move from honesty to hope to rejoicing, you will become an encouragement to people in your life and an example of what it means to suffer well.

We held out for healing. We prayed for it. We laid our hands on his head. We called out for God’s kingdom to come on earth, in Zeke, as it is in heaven. But the healing we wanted never came, and finally, after far too long, Zeke took his last breath at 3:00 this morning, passing from life to death, and on into eternal life.

“Where, O death, is your victory?

Where, O death, is your sting?”

Zeke is with Jesus. I’m jealous of them both.

I’m jealous of Zeke because he gets to rest from all of his trials. He gets to see what I can only hope for. He gets to know Jesus face-to-face. He is made whole, today, in the presence of his Savior and Creator.

I’m jealous of Jesus because he gets to talk to Zeke. Because of this disease, I was never able to have a real conversation with him. He could only respond nonverbally because the speech function in his brain was not allowed to develop. But now that he’s made whole, the first person he ever gets to converse with is Jesus. So I’m jealous.

On this mountain the Lord Almighty will prepare

a feast of rich food for all peoples,

a banquet of aged wine—

the best of meats and the finest of wines.

On this mountain he will destroy

the shroud that enfolds all peoples,

the sheet that covers all nations;

he will swallow up death forever.

The Sovereign Lord will wipe away the tears

from all faces;

he will remove his people’s disgrace

from all the earth.

The Lord has spoken.

Our hope is built upon the resurrection of Jesus. We don’t imagine that Zeke is whole or that we will see him again because we are looking for ways to comfort ourselves. Rather, we comfort ourselves in the historical fact of Jesus’s resurrection and what that means about the future for all who believe in him.

Zeke’s bed is empty, and I feel that same emptiness in my heart. All of the pillows and blankets that protected his flailing feet and arms from hitting the bedrails are still there, but his body is conspicuously absent. My heart is wrung dry. My stomach is churning.

For half of his life he suffered from the effects of seizures. Now, for eternity, his body is made new, never to seize again. I rejoice that his suffering is over. I lament that he is gone.

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My sweet boy, the next time I see you we must have a long chat.

I love you.

I rejoice with you.

You are missed.

I will never forget you.

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.

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?