Allie loved singing songs and listening to music. Baby Beluga was her favorite lullaby, and we would sing it to her nightly at bedtime. Besides Baby Beluga, Allie preferred the music of Hot Buttered Rum. If you aren’t familiar with Hot Buttered Rum, they are a bluegrass band out of San Francisco. So they don’t typically get a ton of fanfare from the preschool crowd. However, HBR did a side project where they recorded traditional and original children’s songs for a Discovery Kids music player.

Allie received the Discovery Kids music player as a Christmas gift from Popos and Grandma Rita when she was two. Allie carried the music player around the house, and she and Evie enjoyed dancing to the songs of Hot Buttered Rum. They would turn it up loud, and tell us they were having a party. Kyle and I would jump fifteen years in our mind and talk about the type of party the girls would have then. We thought for sure that they would each still be here and still dancing to loud music together.

After Allie suffered her first seizure in March, we brought the music player to the hospital and played the songs while she was unconscious in the ICU. We hoped the sounds of something familiar would help bring her back to us. It was a miracle when Allie came of the ventilator, and we were so fortunate to get her back. As she recovered in the hospital, we continued to rely on her music. There were days where she struggled to find words, but the music helped her as she worked to regain her speech and memory. We would turn on the music player. Instantly, Allie would be able to remember and could sing the songs.

We brought Allie home from the hospital at the end of March, and we thought she was on the road to recovery. Allie was doing speech and occupational therapy as an outpatient, and she was making good progress. One of the songs by Hot Buttered Rum is called “Bit by Bit” and this song became an anthem for Allie during this time.

“Bit by bit I’m getting better,
Little by little I’m moving right along,
Piece by piece I’m putting it together,
Learning how to sing my song.”

Allie was supposed to be napping one day during April, but she was never much for sleeping. Instead, she turned on “Bit by Bit” and began jumping on her bed. I watched her on the video monitor. She was smiling and completely free. It was the most beautiful sight.

This beautiful sight was fleeting, and the progress came to a halt. Allie was in and out of the hospital throughout May. During the many trips to the hospital, we always brought Allie’s music with her. Allie’s music went with us to the Mayo Clinic, and we listened to it while we stayed at the Ronald McDonald House in Rochester. We played her music at home during those days where she had no energy and only wanted to be held. It was a comfort to her. To us, it became the music we sobbed to as we lost all hope and accepted Allie’s fate. We took Allie to the hospital for the final time on June 10th, and of course, her music came with us.

Allie coded at the hospital in the early a.m. hours of June 11th. The staff was able to revive her, but she was never conscious again. Imaging clearly showed now that the tumor had aggressively taken control, and Allie would not recover. We tried to turn on the music as we prepared for Allie’s death. Her music would not play. Family members brought us new batteries, but this did not fix the problem. It was almost like the music player coded on June 11th as well.

Allie’s music had served its purpose here on Earth. Allie no longer needed it to play while she danced with her sister or jumped on her bed. She no longer needed it to help improve her memory and recall. She was no longer suffering, so she no longer needed it to bring her comfort. But part of us wonders if Allie needed to take it with her as she headed for brighter skies.

We can picture her now. Dancing and jumping to her music. Completely free.