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Heart Warriors: A Family Faces Congenital Heart Disease Paperback – 24 Apr 2012
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"Anyone who has ever suffered grief, in any form, will benefit from this passionately honest book. Grief is Amanda Adams' constant companion, both her oppressor and her guide, as she gropes her way through a heart-rending experience."--Kristin Henderson, author of "While They're at War: The True Story of American Families on the Homefront"
"Anyone who has ever suffered grief, in any form, will benefit from this passionately honest book. Grief is Amanda Adams' constant companion, both her oppressor and her guide, as she gropes her way through a heart-rending experience."--Kristin Henderson, author of While They're at War: The True Story of American Families on the Homefront
About the Author
Amanda Adams is a "Heart Mom" and a powerful voice within the CHD community by working closely with cardiologists, cardiothoracic surgeons, and nurses from Harvard University, Baylor University, University of Southern California, University of Illinois, and CU Boulder Medical. She founded two 501 c3 nonprofit organizations for CHD, organizes medical conferences for Hypoplastic Right Hearts, attends medical advisory board meetings and national chapter presidents meetings for the Children's Heart Foundation, and chaired the Congenital Heart Walk in Colorado. As a pioneer of CHD advocacy, she is also firmly rooted in the social network of CHD parents and survivors.Amanda has done several press interviews and addressed a variety of audiences on behalf of the American Heart Association, including her speech to over 10,000 walkers and the press for the 2006 American Heart Association Heart Walk in metro Denver.
Top customer reviews
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The first half of the book is heartbreakingly raw and honest. Amanda’s account of how her world was shattered on the day she and her husband Jim found out about Liam’s heart defects and her descriptions of the agonising wait for surgery and the rollercoaster ride on the cardiac intensive care unit instantly transported me back to similar points on my own journey as a heart mum. In all honesty, I think I sobbed my way through most of the first half of the book – it so vividly described a world that was all too familiar, capturing the fear and the uncertainty of surgeries, rocky recoveries and anxiety for the future.
Later on, the book moves on to discussing living with the challenges of CHD – the fear surrounding your child’s mortality, the worries about how to help your child understand their condition and the impact on family life and siblings. Amanda shares a lot about how the heart community has helped her and how her acceptance that she is not in control of what happens in the future has also helped ease her fears. She also talks a lot about anticipatory grief – grieving the potential loss of your child before it happens. This was something I definitely resonated with although I had never recognised it as such before and it is something that I think a lot of heart parents will identify with.
Amanda’s moving account of her family’s heart journey and how she has drawn strength and comfort from the heart community is certainly one that I would recommend to other heart families to read but also one that I would recommend to the friends and families of those living with CHD to help them understand more about the journey and how they can be supportive.
Most helpful customer reviews on Amazon.com
Something changed after the first half of the book. The focus seemed to shift to her feelings of anger, annoyance and impatience and all three were prevalent. While her burden was/is heavy, I believe that most people we meet mean well and try to be empathetic. A lot of them just don't know what to say or how to say it, nor do they know how hurtful their comments can be to someone in a crisis--it is certainly not intentional. It is too bad she could not have understood that and tried to explain and educate others without being constantly offended! She lost me at that point.
I also felt bad that she describes procedures with words similar to "stabbing to put tubes in, ripping apart his ribs," as if doctors were meaning the baby harm instead of saving his life. (I know she had therapy but was it enough?) I would have rather that the second half was dedicated to the details about the first few years of his life, what other procedures were done, how he was treated at school, if he was able to play with other children, if his life was limited and how so. I don't think she did Liam justice!!
Sorry for the negative review but I guess I expected a different story. The most helpful part of the book was the section on what to say and what not to say--made a lot of sense and so necessary to prevent others from going through what she did.
During our child's early years, I often felt (in no particular order): stressed, guilty, angry, worried, sick, and even at times, happy. I longed to know if my feelings were "normal" or if I was completely losing my mind. Friends and family didn't "get it" often trying to tell me to just move on, that things will be OK, or even worse, comparing their child's medical issue of the day to my child's recovery from open heart surgery.
Heart Warriors has completely validated every emotion I've been through and helped me to know I'm not alone. I'm not crazy. And I actually am doing OK.
I strongly recommend this book to anyone who is going through a similar medical crisis with their child. The reassuring segments made a real difference to me, and I would imagine, would also help others. Plus there is just so much "know how" for those facing prolonged hospital stays.
Ms. Adams has written a heart-felt book. Her son is nothing short of a miracle. I wish them all the best in their continued journey. Heart parents know that the journey is never over. It just continues forward for a lifetime.