Butterflies and Second Chances: A Mom's Memoir of Love and Loss is a biography of Elizabeth Hines, told by her mother and advocate, Annette Hines. Elizabeth was born with mitochondrial disease, a degenerative illness, and died at the age of 17. She had special needs. And through this book, I learned about how special Elizabeth was.
The memoir doesn't have a Forward and Annette doesn't explain why she tells this story. Instead, she immediately launches into the details of Elizabeth's birth. I found this lack of explanation striking: on the one hand, her focus on the facts quickens the pace of the story. On the other hand, I had no mental framing for what I was about to read, which was somewhat destabilizing.
Regardless of Annette's reasons for telling this story, the act of telling it commits her account to posterity. And Annette's writing is frank and simple. She gives readers detailed descriptions of Elizabeth's medical needs. She conveys righteous indignation at mistreatment by medical professionals. She shares her anger and her pain, her flaws and her mistakes.
Annette is a disability rights advocate and a special needs lawyer. She spearheaded the production of the Special Needs Toolkit, available here. Her book is an example of how sharing our experiences is a way of helping others. In a way, the book can be seen as part of our #MeToo era, but in a different context.
However, this book isn't just Elizabeth's biography. It's also the story of how Annette learned to grieve. At the outset of the story, she zeros in on the anger, frustration, and guilt she feels as the parent of a special needs child. She even confesses to wanting and having a second child so that she could experience parenthood differently. Eventually, she allows herself to feel profound sadness and loss, and moves toward healing.
And again, I think she shares all of this because she is an advocate -- although that's an inference that I am making, because Annette elects not to give you her reasons for writing the book.
I am not sure whether she realizes it, but the story she tells is as much hers as it is Elizabeth’s and her family’s. I am grateful Annette shared it with us. I highly recommend her book.
And, by the way, if you would like a paper copy of the Special Needs Toolkit, please give me a call. I have several extra copies.