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.
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.”
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?
Praying with you for complete healing for Zeke. My heart breaks with you and Breena as you watch him suffer. Sweet Jesus, be near.
Thank you, Marla.
“Will you love me, will you trust me, will you know me to be good?” The questions from the heart of God through the worst of things – praying alongside you today.
Hard words, but good. Thank you, Cyndy.
Praying. Jesus, only Jesus.
Joining with you in prayer for a miracle. Thank you for sharing your story
Thanks for loving on Zeke at church!
Lord Jesus Christ, with all the power over life and death that you hold in your body, lay upon Zeke even now. Lay upon him and let transformation begin and continue until You and ONLY YOU make all things new. You alone are a HOLY God. WE are so so blemished by sin and this world. Jesus cover this sin born yet innocent child with your life altering, transformational blood. Begging for mercy, we lay at your feet in reverence and at the same time, bear hug desperately the cross. We love you, we trust you, Let the world see YOU live through Zekey.
Praying right now, my brother. God has already used Ezekiel and you to glorify His name. May his total healing be yet another testimony of God’s faithfulness. Yet, not what I will, but His will be done. Hurting for and with you.
Amen, thank you.
As I watched our second child die after a long battle with cancer, I trusted God had a plan. After 6 years, I have seen glimpses of His glory being made known through her little life. It was, and is, still hard but I praise God suffering has its purpose….
Praying for your son’s healing and that God would truly meet all your needs during this time of wholly leaning in Him.
Julie, I’m so sorry for your loss. Thank you for commenting. 🙁
Andy, I am shocked and saddened by your tragedy. I’ve been thinking about you for awhile and not called. Please forgive me. Thank you for your faith and letting us in. I will pray.
Thanks, JT. And don’t worry about not getting in touch, I know that you’re caring for so many.
Our Heavenly Father…..please heal Zeke-give Peace to both parents! Help them all to be strong!!
Andy and Breena- We are praying and fasting for the healing of Zeke. We love you both and hope you know the love of your friends and family as we lift you all up in our prayers. Psalm 147:5 has been a repeated prayer in knowing that God can heal your son, and also that His plan and purposes for all this is greater than what we can grasp. Love, Kate and Jason
Thank you. We feel everyone’s prayers!
From one mama who has cried and cried out to God for healing and wisdom and answers for her own young daughter, your story, your journey has not left my heart for days. Though we do not know each other, I am committed to deeply praying for your son’s complete healing, wisdom for you and your wife, and peace that surpasses all understanding for your family.
Thank you, Shannon. That’s exactly what we need.