Butterflies and Second Chances: A Mom's Memoir of Love and Loss

by Annette Hines

The world Annette Hines knew exploded when her infant daughter Elizabeth was diagnosed with mitochondrial disease—a degenerative, life-limiting illness. Annette’s joy quickly turned to apprehension and she knew nothing would ever be the same again. Butterflies and Second Chances is the inspiring true story of a mother’s special needs journey, and her struggle to secure the best possible life for her child in the face of bureaucratic resistance and marital crisis. It is a story of sacrifice, dedication, and the life-altering adjustments a special needs parent has to make when confronted with the unthinkable. But most of all, it’s about love and an extraordinary mother-daughter relationship that flourished without words in the darkest shadows of adversity. Annette and Elizabeth’s powerful story provides hope, solace, and a path forward for parents of special needs children, and it will resonate with families everywhere.

208 pages, Paperback

Published March 24, 2019

Reviews

[Regina Snowden]

"Butterflies and Second Chances.... A Mom's Memoir of Love and Loss” illuminates the depth of best dreams and fears, that parents all hope for when their child is born through Annette’s personal experience.

Annette beautifully articulates the layered two-decade experience of being a parent of a child with a severe disability. She writes about the parent process, which all parents can relate to on varied and multiple levels, and the impact on the family unit when caring for a child when that child's health becomes the highest priority. Annette exposes not only the family economic and emotional challenges, but the social barriers as well. With courage together, both mother and daughter pursue the quest for Elizabeth's best life.

Annette has exposed all of the most raw dimensions of being a parent to a child with multiple challenges, and how her great love for her daughter became her platform to ameliorate the difficulty of systems unprepared, unwilling to prepare, with inadequacy to provide for the multiple needs of parenting resources. Annette, like so many, was forced to find and create her own path, along with Elizabeth and in the process created a system that will in fact, address one of the most pressing legal injustices remaining, that of the rights and resources due every child, especially those with a disability.

Any parent can relate with both cheer and agony for her every step of seeking supports and a higher path, amidst daunting lacking societal, educational, and health care supports.

[BJM]

Life hurts some more than others

We cannot know why some lovely, innocent people have hardships while others’ hardships are not as challenging. Annette’s ‘tiger mama’ courage for both her daughters is pure and continues to invite in her brilliant heart and mind. Now, Annette’s clients and their families benefit from what she and Elizabeth shared and learned together. Thank you for sharing your amazing story.

[Carla]

I have to disclose that I am not the parent of a special needs child but there was something about the book description that really touched me. I had to read this book but I could not quite put my finger on it.

Parenting is hard – we struggle as parents, we have to be an advocate for our child’s health and education, we hurt at their pain and all we want to do is see them happy and healthy. Having had four miscarriages before I became pregnant with my second son, it was a constant battle of fear that I would lose him and that something would go wrong. He was born healthy but has his own health conditions, with food and seasonal allergies, eczema and asthma, we spent a lot of the time at the doctors office. This felt like a non stop upwards battle everywhere we turned, but I can’t even put into words the struggles that Annette went through. I find it hard enough to have someone listen to me about my son’s breathing and allergies – I can’t even begin to imagine myself in her shoes fighting to have someone listen to her concerns and what she felt was right for her daughter or the diagnosis for her.

Her story is beautiful, honest, raw and painful at times. I found myself crying throughout various stages in the story and at other times my heart full of joy for the kindness others can show. Annette shares the good, the bad and the ugly in an honest open manner. You feel like it is a conversation rather than a book and I loved this.

Mother, daughter and sister are fighters and their story is powerful and so very important for everyone to read. We need to understand the emotions, the difficulties but also the beauty that is raising a child with a disability. We as a society need to learn to show compassion and understanding to others – we may never be in their shoes but we can learn to help them. She offers such simple solutions – like going to the parent, preparing paperwork to make their life just a little bit easier. Simple things that others take for granted.

This is a beautiful, raw story of the love between a parent and their child. They fought a courageous battle and I felt so sorry for their loss. I could not put this story done – it is beautifully written and perfect for all adults and even young adults.

[Jessica]

I received a free copy in exchange for an honest review.

I started out all ready to tear through this book and get straight through it. What I wasn’t prepared for was being made to feel like I was right there with Annette Hines and feeling a lot of emotions. I definitely wouldn’t say I felt what she felt but she definitely wrote to bring the reader into her world. The emotions evoked stopped me dead in my tracks several times and made it hard to finish reading. The worst was the last few chapters that had me huddled up in a little ball crying my eyes out over the loss of Elizabeth.

I learned a lot about the lack of care for severely disabled people. I always knew there were programs for children who had disabilities but I didn’t know how much the parents had to fight for them. Not having any of my own children, disabled or not, I do not know much about the system other than what I have read but I sincerely hope that it has gotten easier for parents since Elizabeth’s earlier years. I admire Annette’s fortitude and dedication. Instead of sitting back and saying woe is me, she fought and she developed advocacy groups.

There was one point at which she did almost lose a little of my respect. When she voluntarily admitted to wanting that perfect do-over baby and explained that was how Caroline came to be. However, the simple fact that she could admit that she felt that way to everyone that’s going to read this book, including her family, shows an amazing amount of character and that, in itself, is a truly respectable thing. Again, I have no personal insight into her situation and can’t come close to being able to pass judgment on her.

All in all this was a very enlightening book that truly broke my heart. I’m not sure how someone goes from defining themselves for more than 17 years as the mother/caretaker/warrior for their child moves on when the fight is over. I think this was a very important book to right to shine some light on the struggle parents of disabled children face when trying to get appropriate care.

5 stars

[Karie Sortman]

Soooo close to home for our family so I may not be as objective as I others. I had to read it in chunks because it made my heart hurt. This is written by a brave mother who put herself out there in writing this. I wish there a way to give her a better accolade- if you have a special needs child in your family it gives you a small peek into what life is like for the parents- you can’t understand it totally unless you walk it...but an increase in empathy certainly. I cried a lot in the end. Thank you Annette Hines for taking the time to write this, this gramma of a special needs child will never forget this read

[Annette Hines]

This is my book and my story so of course I love it!