‘My little Buddha’ – Tassie pea Sally talks about a 'forbidden' subject
Sally’s peashoot is Willow, a kind, funny and empathetic peashoot with an original diagnosis of Turner Syndrome and grey matter heterotopia. Sally became a single mum to Willow and her two older sisters when Willow’s dad and his family chose not to have any more contact with her due to her diagnoses.
Willow’s health unfortunately took a turn for the worst just before COVID-19 hit. She started sleeping 18-20 hours a day, had trouble walking and swallowing, begun experiencing hearing loss and needing a nasal gastric tube. An MRI eventually showed that her brain had atrophied, and Willow underwent many tests in order to find out what was happening to her.
Willow was going to a fantastic, supportive school that she loved, but didn’t have the energy to make it through the day. The school brought in a bed, blankets, pillows and beanbags so she could stay at school, yet sleep and rest whenever she needed to. Due to COVID-19, Willow couldn’t be sent to Victoria for treatment, so they relied on their great local team who rallied around Willow to provide the best care possible.
Sally shares that Willow ‘puts everyone to shame’ with her empathy, kindness and wicked sense of humour - all the things you want for your child. Sally calls her ‘Little Buddha’, and is proud of her compassion and understanding towards other kids with challenges.
Sally reflects on some rectum moments she’s experienced, including the mums who tell Sally how great their children are for talking to Willow, and the fact that Willow is never invited to parties. Rectums – please stop doing this! Fun fact – Sally is a children’s entertainer and balloon artist called ‘Sally Sunshine’– so kids birthday parties are her thing.
Eventually, a team of specialists were able to come up with a diagnosis for Willow’s worsening health. They left Sally with just an acronym to look up by herself – MNGIE. This condition will eventually take Willow’s life.
Sally reflects on the fact that parents of dying children experience intense silencing and invisibility, as if the subject is ‘forbidden’. As a result, she’s started her own podcast with a friend, Gin In A Mug, especially to break the silence and provide comfort and community to others experiencing the anticipatory grief of losing their child in the future.
Thank you for sharing your vitally important story Sally xo
Other Pea Business:
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Forecast for Thursday May 13 – Afternoon showers, 18 degrees
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