A Rare Collection – Lullabies
ONCE UPON A GENE – EPISODE 113
A Rare Collection- Lullabies
There’s power in storytelling- for the listener and the storyteller. A Rare Collection is a monthly series featuring people from the rare disease community, sharing a story with a common theme. In this episode, grandparents share their lullaby stories.
In the classic lullaby, Hush Little Baby, when an item is broken, the mama will make it better. But there are things that a mama (or a grandma) can’t fix. Emma was diagnosed at 6 months old and her parents’ and grandparents’ hopes and dreams went dark. The grief was all-consuming. There’s no way to fix Emma, but her love is pure and perfect and her smile can light up the darkest night. Emma doesn’t need to hush and grandma doesn’t need to fix, but just be next to Emma along her journey.
When Emma was born, her grandfather, better known as her grandpopotamus, held her on his shoulder and sang the lullaby, Go to Sleep. Emma loves music and her grandfather brings her joy through singing. He strives to find the joy and light in Emma’s world so he can broaden it and ensure she enjoys her life to the fullest.
When her first child was born, Mariana realized she didn’t know any lullabies. After her son had an accident, she learned the words to Hush Little Baby and sang it to comfort him in the hospital. As a grandmother, she continues singing Hush Little Baby to her grandchildren when she tucks them into bed. A lullaby isn’t about how pretty your voice is, it’s about your heart sharing comfort, care and love to a child that you get back a million times over.
When taking care of his granddaughter Sloan, Poppy sang A Bushel and a Peck as he put her to bed. He sang that song to his own children hundreds of times, but this time was different. Sloan had just been diagnosed with a rare degenerative genetic disorder. The future will bring uncertainty and hardship. As Poppy sang, feelings of panic, worry and hopelessness took over. He loves her so much- a bushel and a peck.
Elijah is beating the odds, proving he has a purpose, blessing and encouraging every person he meets. His grandma has a message for him- to never stop singing his song, never stop dancing and never forget how much he is loved.
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