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.”