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.
Andy, You and Breena have displayed such faith through this. I love you all beyond measure and cry out for/with you. I am blessed by your words and cannot even pretend to know what you are going through. May you find comfort in our prayers. Aunt Jan
Thank you, Jan. Prayers are what we covet the most!
Andy, your mom just called me with the update about Hospice. I have been praying for you and your sweet family. My church, Avondale Presbyterian Church, has been praying for Zeke too. I was so hoping for a different answer but your faith in God is such an inspiration to me. I know it is this Faith that will get you, get all of us, through this time. When one door closes, another one opens. I cannot wait to read this whole website and maybe understand a little more about what is going on. I have read a lot of Breena’s blog but my heart goes out to you guys and I pray everyday that you guys can find some peace in this someday. It is hard for me to understand what is going on but maybe this will open the eyes of people who have never heard of this disease and maybe find a cure for it. Anyway, please know that your family to the South is praying for you and hope to see you soon. We love you very much!!
Thanks, Tina. It’s a horrible disease–the worst I’ve ever heard of. We really appreciate your love and prayers. God bless y’all!
Prayers for your family are coming from northwest Iowa, too. Peace and grace to you. ~Stan
Thank you for letting us in Andy. We love you and are asking God for you all.
Thank you, Stan. Welcome to America, btw!
May you find comfort knowing that Zeke, Breena and you are inspiring so many during this sad journey. Praying for your entire family.
Thank you, Janice.
I have been following some of the blogs and I just want you to know that you, Breena and Zeke have been in my prayers. I too pray for him to be healed and that God’s will be done. My heart breaks for you and your family. It is a road that no parent should have to endure, but I pray that you can hold in your memories those smiles and sweet moments with Zeke. May the Lord give you both the strenghth you need to face each day and what it holds. I will continue to keep all of you in prayer in each day.
Thank you, Jodi. I hope all is well with you.
Don’t know how I just found your blog… through the clicks and web of wonders of Facebook I guess. But I was touched by the honesty and vulnerability of your words and wanted to share one part of a passage of Scripture that is very close to my heart:
“Day is coming when you’ll have it all—life healed and whole. I know how great this makes you feel, even though you have to put up with every kind of aggravation in the meantime. Pure gold put in the fire comes out of it proved pure; genuine faith put through this suffering comes out proved genuine. When Jesus wraps this all up, it’s your faith, not your gold, that God will have on display as evidence of his victory.”
1 Peter 1:5-7
I am saying a prayer for your family right now and especially for your little boy.
Andy,
This is the first time I have read the blog and news of Zeke. I sit here in tears!! Being a father it breaks my heart to hear of our babies suffering. I believe it breaks God’s heart too. Sickness, disease, violence, all that breaks His heart. Your Faith is an inspiration brother and I will sit here in my tears and pray for you, your family and especially Zeke. Love you Brother!!
Thanks, Chad. God bless you and your family!
Thank you, Mary. That sounds like it’s from The Message. I love Eugene Peterson! Those are significant words for me.
Wow. Your perspective is incredible! You are undoubtedly being used by God right now. Even though he feels distant, he is speaking through you to so many hearts. Zeke’s suffering is ultimately drawing more hearts to heaven through your faith. Stay focused on your eternity, you are doing an amazing job in the spiritual battle of this. I will also be praying for your family and that God’s will be done, and strength for you and your wife. Thank you for opening your heart to the world.
Thank you, Sarah. It’s our hope that God will bring people to himself through the suffering of our family.
Preston and I have been and will continue to pray for all of you.
Thank you guys!
Andy, Breena and family,
I am Jean’s cousin. Andy and I have met, but it’s been many years. I have been following your blog through her facebook page. I pray for Zeke’s comfort and for your entire family as you go through this journey together. I pray for your strength and Faith in God to be unbroken. Love to you all and know that I am thinking of you.
Thank you, Linda. Many other “distant” family members have reached out to us and left comments on our blogs. God bless you!
I don’t personally know you or your wife, but my husband and I have been following your story and praying for Zeke’s healing. Thank you for this post; you conveyed a deep truth about brokenness and transformation that my husband and I can identify with. Though I can’t imagine the pain of watching one of my children suffer, I understand suffering so much more now than I did years before . God has used our suffering to bring about change and good; He will not waste yours either.
Thank you, Angie. It’s our hope that God is redeeming and will redeem the suffering of our son and family. He certainly redeemed the suffering of his own Son.
We are spiritual beings having a human experience. Our life on earth is so unbelievably short and we cannot even comprehend it. There is a very big plan here we just can’t see it. Continue with your faith for God knows exactly what He’s doing. We may not like it now but trust Him. I implore you to just trust Him.
Thank you, Corinne. God is good and we trust him always.
Hi Andy! I can’t imagine the sorrow that would seem to overtake you in this time of your life. I often find myself praying for you and Breena. I know that God’s will will be done. I pray that He will be able to use this situation to bring glory to His kingdom! I pray that you and your family would find comfort as well! I wish that there was more that I could do.
Blessings and love to all of you in Jesus’ name!!
Thank you, Lori! Keep those prayers coming!
Andy and Breena, I too am a cousin of Andy’s mom. As with Linda, we have met at least once if not more. My heart and soul go out to you and your family as I have read of this tragic life experience. Your faith and love are incredible. Your incite and strength in the Lord’s word and deed is wise beyond your years. Our prayers and thoughts are with you as you make this unthinkable journey. May God’s will bring you comfort and the Holy Spirit bring you love and peace as you face this unbelievable test of faith. Your family and friends are with you in prayer and love.
Thank you, Mendy. God bless you.
Amazing post! Thanks for sharing!!! It’s so beautiful to find peace in suffering!
Thank you, Caroline.
grateful for this perspective; there has been that silence before in my life- Daniel and I were blessed w/ 2 precious babies that went home to Jesus before they were born- and I couldn’t hear God but I don’t doubt His goodness; I hope that I was refined to be more like Jesus during that time- today though I just want to snuggle my kids a bit closer and thank God again for the time He gives us w/ them.
Megan, I’m sorry for your loss. Breena and I have been spared the pain of miscarriage, though obviously we are walking through the deep, dark valley with Zeke. God bless you.
Andrew thank you so much for your words and insight. What a hard teaching! I remember when you guys had us over for dinner a year and a half ago and praying for Zeke and my wife Amber when she was pregnant with our son Micah who has Cystic Fibrosis. My prayers are with you guys. What awful thing this disease! I hope and pray for the resurrection power of Christ! I know that there are no words or anything that we can do but just ask for His Kingdom to come. May the peace of Christ be on you and your family.
Amen, Stephen. May his kingdom come!
Andy and Breena, I am Rick andAshley’s Mom. Andy’s Mom is their Aunt and always special to me. I pray for strength and healing as you go through this very sad time in your life.
Thank you, Patsy. God bless you!
Andy, I am a past friend of your mom’s and used to attend Grace when it was just Grace (my maidan name is timko). Your family’s journey has touched my heart in a deep way. Your honest searching for God every day and especially as Zeke has not been getting better, has been amazing. I have shared Bree’s blog with many of my friends. As painful as this has been, it’s been a testimony of God’s abundant love and grace. Really. My prayers are continually lifted up to the Father for your family!
Thank you, Mary. I remember you from the good ole days of Grace! Blessings to you.