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.

---

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.

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?

Ezekiel, my three year old son who suffers from persistent epilepsy, slept between me and Breena last night. That afternoon he was laying on my lap when he had a major seizure. While he typically has a near-constant barrage of micro seizures (usually lasting about 2 seconds, occurring every 10 to 20 seconds), he hasn’t had a major seizure in several months, and to our knowledge, never while sleeping. But as he lay sleeping on my lap, his whole body began to jerk in a semi-rhythmic pattern. This was unlike anything I had ever seen him do before.

I called for Breena, and she came running downstairs. His eyes were open, but they were straining upward and to the left. A major seizure. We gave him a medicine called Diastat, which is essentially valium, and is designed to significantly slow the brain down, ending all seizure activity. Though he did seem to come out of his seizure, something else seemed to be going on, as well.

He rested his head on Breena’s knee, staring into the corner of the room. I moved my head into his line of sight, and it looked like he recognized me–like he was looking right at me. But as I moved my head away, his eyes did not follow. In fact, they didn’t move at all. Nor blink. What I saw terrified me unlike anything in all my life. I saw death in his eyes. For what felt like an eternity, they didn’t move or close. He just lay there, empty.

Breena screamed his name as I scrambled for the phone to dial 911. While I was fidgeting with the password, looking down, he came out of it. He blinked, looked around, and came slowly back to consciousness. Or whatever. From wherever. His right arm lay useless at his side, exhausted from seizing. But he seemed cheerful enough, at least for a kid who has just seized like crazy and been loaded up with valium. Breena took him to the ER where he eventually regained movement in his arm, and received the necessary drug treatment. Then they came home, and we continued on with our life, now with the burden of the knowledge that he can have a major seizure while sleeping.

I thought I had watched my son die. My wife and I are both convinced that, had he been in his bed napping instead of with me, he would have died. These thoughts weigh heavily on us.

But we are also lifted–lifted by the prayers of saints both here in our town, across the country, and all over the world. We feel that. We really do. And it gives us courage. The prayers of the saints and the support we receive from family and friends allows us to persevere through the hell of Ezekiel’s epilepsy. We have seen, and been the beneficiaries of, the kingdom of God on earth.

We continue to pray, of course, that God would heal Ezekiel, and we know that many around the world are praying this with us. God is good, and we trust him, so we’re asking him for the best possible outcome. And why not? The Scriptures tell us to approach God’s throne with freedom and confidence. Jesus said to pray with audacity.

So we do. And we wait. Some days we struggle. Others we thrive. Some days the disease wins. Others it doesn’t. Through all of it I’m reminded of the certainty of the hope we have in Jesus–the hope that we will one day, like Jesus, rise again from the dead to everlasting, full, whole, renewed life.

Life that will never be tainted by death or disease.

Life where Ezekiel is my brother, and where we can talk for long hours about the goodness of God and the beauty of life.

Life where we can sing praises to our God in beautiful harmony. (Something we could never do in this life, though not because he can’t talk or sing, if you know what I mean.)

Life where he can ponder the mysteries of creation, and where his steady hands can build a home, tall and strong.

Life where I will look into his eternal eyes and see…Life.

That’s my hope. And I have it because of Jesus. Come, Lord Jesus.