Advocating: A Mother’s Journey

THE BOOK

I was offered the chance to review a new book earlier this summer and it intrigued me. Butterflies and Second Chances: A Mom’s Memoir of Love and Loss by Annette Hines touched me in so many ways.

I have read it three times now and I have been inspired and touched each time, finding new things to absorb. I got a chance to talk with the author, Annette Hines this fall (before all the advocacy chaos broke out here at our home) and I have since wished that we lived closer and had more time together. Our conversation inspired me and boosted my determination as an advocate for my children.

While I received a free copy of this book for review and I thoroughly enjoyed my contact with the author, all thoughts and opinions in this review are completely my own.

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Annette’s story began when her first daughter was diagnosed with a mitochondrial disease, which is a degenerative, life-limiting illness. The book chronicles the journey from her daughter Elizabeth’s birth to the time after her death. It is an honest, painful accounting and the author did not hold back on detailing her daughter’s illness, her own painful marriage, and the help she received… and didn’t receive. She shares her own strengths and weaknesses — the emotions are pretty raw throughout the book. The ending is not triumphant, but rather a moving forward into what the length of her daughter’s life brought for Annette. She is now an Attorney Advocate for many other families who have dependants with special needs.

I feel this book will connect with many different readers because the ultimate story is about advocacy and being a staunch voice for her daughter within faceless institutions, uninformed providers, and inflexible systems. I found a correlation to my own experiences in advocating for my foster and adopted children in SO many ways. It is also, though, a story of community, the wonderful people who made a commitment to a special girl, and the incredible strength and resilience of a mother.

THE INTERVIEW

My telephone conversation with the author, Annette Hines was such a gift for me. I had several questions ready, which were supposed to be about the book. However, the conservation quickly turned towards other avenues as her answers triggered thoughts for me, much as her book did, about advocating for our kids. I have never lost a child, but I have been on the incredibly long, painful, and at times lonely journey of extreme advocacy for my kids.

THE BOOK

I initially asked Annette when she realized that she needed to write a book.  She said that she was inspired by another parent to share her story and that she wanted to share with the world what a special person her daughter, Elizabeth was and how much she had been loved.

Annette said that she has been amazed by the feedback and by how much the book she wrote has connected with so many people. During our conversation, I asked if the release of her book, having shared such a painful journey had changed anything for her. She has come to understand that she is now in a new club of parents who have lost a child. She said she didn’t know how to fit in anywhere for a bit, that she had become a mom without a country for a while. She wasn’t a special needs parent anymore and she was really not a “normal” parent, even though she had her second daughter to attend to. Annette told me that the book has helped her connect to so many people. As we talked through this, she said that she still has no good answer when she is asked how many children she has. It’s different in different situations but is still a hard question to answer.

THE ADVOCACY

When I switched the conversation to the incredible connection I felt about her amazing advocacy throughout the journey with Elizabeth, I told Annette pieces of my journey with my foster and adopted children. I told her that I find that institutions function for themselves and their own process.  It is rare to find a team who “gets it” from the beginning.  I spend so much time educating the team and it is hard to not get angry. The conversations seem to become adversarial as soon as I bring in outside help.   Annette responded right to the core of this, “As parents, we have a lot of guilt, not trusting our instincts, always under the gun, not feeling good enough.  When we bring in someone else, we feel like we failed.  But we need to see it as a successful approach.  Use the best tools you have.  Using your tools is being the best parent you can be. And often, the tools are others who can speak for you and your child.”

The conversation followed into what it takes to find your supports, your ‘tools.’ I have an incredible personal support system after all these years, but  I know how far down the road I was before I understood that I needed a support group and maybe an outside expert to support me and to help advocate.  I asked Annette about how folks can find these new members of their team? The beginning of Annette’s response was, “You have to kiss a lot of frogs before you get who you need.” Yup!   She went on to explain things to think of when building your team. 

• It is best to work on this when you a not in crisis.  When you have a child with special needs, you are in this for the long haul. While there will certainly be times of crisis, work on the process of team building during every step of the way.
• Only add people to your team who respect you.  You get to pick your team!
• Spend a lot of time educating those that you want help from.  They may be experts in some piece of it, but you are the expert on your child and their journey.
• One test… ask, “Now that you’ve met my child, what is your plan?  I have a plan.”  What matches between their plan and yours?  How are they responding to your ideas?  The right person will be excited that you have plans. 
• Keep looking!  A match that seems not so great can be rehabilitated.  Good communication is key. 

The above piece of the conversation was SO important to me and very timely as I was just entering a new school year with my trauma and special needs kids. As a follow up to building a good team, I asked, “When is a good time to turn to the legal system and bring in an attorney advocate?”  Annette responded with a small list that included 1. When you and your purpose are in ‘danger.’ 2. When you are stuck.  3. When you are blocked. 4. When emotions are keeping you from being effective. All of these occur for different reasons, but each can stop decision making and progress for your child. As an attorney, Annette said to make sure you keep good documentation of EVERYTHING along the way!!!! I would concur with that in a big way!

Advice

As much as I would have enjoyed talking forever with Annette, I finished up with one more question, “Do you have a favorite piece of advice or a quote, etc. that you find yourself offering to those who advocate for their own children?” She nailed it, “This is a marathon.  It’s not a sprint.  You have to take care of yourself and your family in order to take on the role of advocate.  Practice self-care…. Really practice getting there.  I’m there.  I manage my schedule and say no to things.  And I think a lot,  “What would Elizabeth want for me?“” 

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