Member-only story
A Day in the Life
Finding joy when the days are long
My daughter had cognitive and physical disabilities due to a brain tumor which reoccurred throughout her 21 years with us. Those 21 years were an amazing blur of joy, terror, heartache, pure happiness, and everything in between.
That doesn’t mean it was all a wild ride. There were countless days that were so boring watching paint dry seemed exciting. A typical weekend or summer day for Em when she was feeling good, in fact, was quite predictable.
Emily would pad out of her room at 5am (yes, 5am) and turn on the TV with the remote we left on the arm of the couch the night before. Nick Jr., the channel to which we had programmed the TV to turn on to, would start blaring at an acceptable volume in the family room. The blanket she would use to cover herself was waiting for her on the couch cushion next to her spot.
I would come downstairs an hour later to find that she had opened the blinds to the windows and pulled out pans for me to cook breakfast. I’d disappoint her by offering frozen waffles instead of eggs, bacon, and pancakes, while I made a pot of coffee. After she succumbed to her lame breakfast, made slightly better by them being chocolate chip waffles, she began to color pictures. The kitchen table was soon filled with paper, stickers, buckets of markers and a tape dispenser.
