Grandparents / Extended Family
Being the Aunt: It wasn’t easy but I wanted to be there.
The aunt of a boy with an extremely rare genetic disease talks with her sister about how her role in her nephew’s life evolved after his diagnosis and as his condition progressed.
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Being the Aunt: It wasn’t easy but I wanted to be there.
There’s no bereavement group for aunts: Double-duty grieving. I'm grieving for me but I'm also grieving what my sister has lost.
Navigating the grandparents: It’s an adjustment for them.
Delivering the diagnosis to her mother: “I wanted to control the blast because I was the epicenter.”
