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.

Zeke and BexBut 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.


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.
 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.


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 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?

Those who know my wife and I personally know that we have a son with special needs. Our three year old boy has epilepsy, and it is ravaging his brain. He has a seizure every 15 seconds–all day, every day. He falls all the time. He can’t speak, so his only form of communication is grunting, yelling, screaming, or crying. Sometimes he can’t walk, and has to push himself around on his knees. My wife had to take him to the ER tonight because he cracked his head multiple times today, opening up an old wound on the back of his head. We think that he’s in constant pain, or at least frustration at his brain’s and body’s inability to cooperate.

Many of you are praying for him, and for that my wife and I are exceptionally grateful. Though it is difficult, at times, to cling to God in the midst of this chaos and hell, we know that we would be utterly lost without him. Your prayers give us strength and courage. I wrote a prayer for Ezekiel tonight, and I thought I would share it here.

Jesus, Living One, Hope Anchor
Be blessed for dying for our sins
Be blessed for rising again
Jesus, Death Killer, Life Giver
You whisper the words that revive my soul
You stretch your arms wide to embrace me, to die, to bear the burdens of we who have grown sick, to rise again, to rule, to invite the prayers of your people

You are a son
Like my son
I am a father
Like your father
But I need his son to heal my son
My boy is hurting
He seizes, he shudders, he falls, he bleeds
He groans, he aches, he shouts, he cannot speak
Chaos advances upon him every minute, every moment
Hell comes in the night, seizing him
Clutching, shaking, gripping
It doesn’t let go
Iran claws lay siege to his brain, his body
Relentless, violent, bloodthirsty
The mouth of hell opens wide to swallow him

Shut its mouth, Jesus!
Break its fangs, Warrior King
Deal death a deathblow; throw chaos into chaos; send the demons running
Break loose the iron grip upon his brain; break its hands with a word
Speak, Jesus, speak to your Father because my son can’t speak to me
Give him voice, not that he might speak, but that he might sing, sing the praises of the One who set him free

Bless him, Blessed One
Bless him with a song to sing, the Gospel to proclaim
Still his mind
Silence hell
Order chaos
Arise, Risen One
Arise, Victorious One
Arise, Lord of strength and life and love
Be the strong God of my son
Be the saving God of my boy
May he walk without shuddering
May he sing without stuttering
May he proclaim the goodness of God in the land where the living dwell

Arise, my Father’s Son to heal my son
Heal my boy in your resurrection glory
Stretch out your arms
Embrace him
Release him
Revive him
Resurrect him
Arise, Jesus, arise
You are my hope
There is no other

If you started the M’Cheyne reading program on January 1, and then had a baby which set you back about two weeks, today you would have had a scheduled reading that included Psalm 46.

God is our refuge and strength,
an ever present help in times of trouble.
Therefore we will not fear, though the earth give way
and the mountains fall into the heart of the sea,
though its waters roar and foam
and the mountains quake with their surging.

There is a river whose streams make glad the city of God,
the holy place where the Most High dwells.
God is within her, she will not fall;
God will help her at break her day.
Nations are in uproar, kingdoms fall;
he lifts his voice, the earth melts.

YHWH Almighty is with us;
the God of Jacob is our fortress.

Come and see what YHWH has done,
the desolations he has brought on the earth.
He makes wars cease
to the ends of the earth.
He breaks the bow and shatters the spear;
he burns the shields with fire.
He says, “Be still, and know that I am God;
I will be exalted among the nations,
I will be exalted in the earth.”

YHWH Almighty is with us;
the God of Jacob is our fortress.

God is bigger than your problems. God is stronger than your enemy. God is mightier than the nations. God is wiser than the schemers. With him, you have nothing to fear. With him, you need never be afraid because, in him, your fate is secure. Though your world waste away, your God will never fade, tire, or leave. YHWH Almighty is with you. Run to him, for he is the only sure refuge! Hide in him, for he is the only true strength!