I didn’t prepare what I was going to say ahead of time, which is unusual for me. All I knew was that I wanted to read from Revelation 21. My hope is that these words honored both Jesus and Zeke.
It’s been about two and a half weeks since our sweet Zekey passed away. I think about him every day, almost all day. But when I think of him now, I don’t usually remember the sweet, mischievous little guy running our house in Westerville. Nor do I think of the sickly little boy bedridden at my parents’ house in Toledo. No, when I think of Zeke now, I see a tall, handsome young man with tons of dark hair, big brown eyes, and a big smile on his face. I see him standing in front of me, without seizing, without twitching. He is ready to talk to me. We’re about to have our first conversation.
This is Zeke as he is now, in heaven with Jesus awaiting his resurrection. He is whole. He is healthy. He is untainted by that damnable disease.
Although Zeke’s life was short, and he was sick for almost half of it, he has left a profound impression on this world. If you’re reading this, then it probably means that his life and death have moved you in unexpected and unlikely ways. I believe that this is God calling you.
Our son was so photogenic, even up to the very end. As a toddler, he was always hamming it up for the camera. I sorted through hundreds of pictures and video clips to try to tell the story of his short but powerful life as best I could.
The music we chose for the video is “Your Great Name” by Natalie Grant. This song has a very special place in the life of our family, and Breena would sing it to him often in order to soothe him. He always responded to the sound of her singing with peace and joy.
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 preparea 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 destroythe shroud that enfolds all peoples,the sheet that covers all nations;he will swallow up death forever.The Sovereign Lord will wipe away the tearsfrom all faces;he will remove his people’s disgracefrom 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.”