23 June 2015 (version of Facebook Post)
Regression is one of the cruelest aspects of Julianna’s disease. This bunny moment is bittersweet. At one point, she was able to stand with assistance. No BiPAP or GJ tube here either. It’s very different today.
Tonight, I read Psalm 23 to her out of a children’s story Bible. The story explained that Psalms means “songs.” She asked me why I “talked a song.” I told her that reading a Psalm was like saying the words to a song. As an example, I recited the first verse of “Hark the Herald”, one of Julianna’s favorite song.
She did not approve. She shook her head, and said “No, let me show you.” She sang the first verse of “Hark the Herald” to me, BiPAP and all. Afterwards, she said she needed to rest her voice and asked me to hug her. She closed her eyes, and I thought for a moment that she was going to fall asleep. Unusual, because sleep doesn’t come easily for our girl. She opened her eyes after a few minutes and declared her voice “rested.” Then she was asleep.
Another lifetime ago, she was able to sing all three verses of the song. This life is different. Singing just one verse took a lot out of her, but she did it. She knows that some songs simply have to be sung.
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