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.

Our four-year-old son Zekey has a fatal neurological disorder called Batten Disease, which has stolen all of his motor skills, including his ability to speak. There is no cure for Batten, so we don’t know how much longer we have with him. Because he can’t talk to us, there is so much that we miss out on. One of the hardest, for me, is that I don’t get to experience his imagination, especially as it comes out through his dreams. What his mind does while he sleeps is a distant mystery to me.

This post is my imaginative attempt to enter into Zekey’s dreams. He is the one telling the dream. He is the I in the story.

I was lying in my bed when I heard Cyrus lugging up a big box from the basement. He was grunting and groaning as he lifted it, step by step, up the stairs. I couldn’t see him around the wall, but I could tell by the noise that he was bringing his box of Legos up the stairs.

The door squeaked open and his head popped around the corner. “Hi Zekey,” said Cyrus. He was really excited. He pushed his heavy box across the carpet right up to my bed. I smiled wide. I was so happy that my big brother was going to play with me!

“Do you want to play with Legos?” Cyrus asked. Playing with Legos with Cyrus sounded like so much fun! I laughed long and loud.

Cyrus grabbed a handful of Legos and climbed into my bed. “What do you think we should make? I think we should make a tower all the way to the roof!” Wow! A tower to the roof. This would be so great!

Cyrus got busy stacking the Legos all around me. He even let me hold some. I tried to help but my hands were too shaky. That made me very sad. I wanted to play!

My big brother saw that I was upset and that my hands were shaking too hard to help. He grabbed my hands, smiled, and said, “It’s okay, buddy. I can build it for both of us.”

The walls were getting really tall. They were almost to the ceiling! Cyrus started building ledges for me to lay on so that I could be close to him while he built. We finally made it all the way up to the ceiling, but I was confused. How were we supposed to make it onto the roof? I looked back down at my bed, and it seemed really far away. I was scared. Cyrus could tell.

“You don’t have to be scared, Zekey. I’ll hold you.” Then Cyrus put one arm around me and started to build a door on the ceiling. When he was finished he opened it up and pulled me out onto the roof. There was a great big Lego chair waiting for us out there!

“I built this while you were sleeping last night,” said Cyrus. “I wanted it to be a surprise.” It was.

It had taken Cyrus all day to build the Lego tower to the roof, and now the sun was starting to go down behind the trees. The wind was warm on our faces. We sat up there for a long time, watching the sun set. Then he gave me a big hug and whispered in my ear, “You’re my brother.”

I haven’t read a book like this before. N.D. Wilson’s Death by Living is prose you experience rather than read. The cover image of breaking waves is an apt metaphor, not only for the content of the book, but also of the style. It breaks over the reader, engulfing him in words and narrative and life.

The story is the story of Wilson’s life. Or, more accurately, the lives that led to his life and how those lives continue to impact his life. It’s a family memoir and reflection on the mortality of human existence. It’s the story of people you’ve never heard of, but who have lived fully enough to deserve their own biopic on PBS. It’s the story of how stories get passed from generation to generation to generation, and how those stories guide the paths of grandchildren and great-grandchildren.

One of the most beautiful contributions of the book is Wilson’s insight about how people he will never know and can never thank gave up their lives so that others–including his grandparents–could live. He exists because someone seventy years ago died for a stranger, a brother-in-arms, who went on to get married and have kids who had kids who went on to write books and teach English and have kids of their own.

This book is the antidote to cynicism. It is profound and beautiful, and will give you a sense of awe for the little things, the forgotten things, the things overlooked and passed over in the busyness of life. It won’t solve your problems or even give you a plan of action, but it will change your perspective on the world.

BookSneeze® provided me with a complimentary copy of this book.

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.