Score: 94/100 (9.4 out of 10)
THIS is love.
If we were going to sum up this book in just three words, it would be the three above. This book is beautiful, heartbreaking, frustrating, tragic, informative, inspiring, educational, and—above all—filled to the brim with LOVE. This book reads like a long yet beautiful love letter.
How great a love is it when a mother (the author) sacrifices everything to be there to tirelessly care for her disabled daughter?
Josie Murrell is the mother of Melissa, a miracle child born with a rare condition known as Trisomy 18 or Edwards syndrome. Despite her family being told that she was unlikely to reach her first birthday or ever be able to walk or speak, Melissa—with enormous help from her loved ones and some gold-hearted souls—shattered all expectations time and time again! Her journey, along with that of her mother, is one of the most tumultuous we've ever read about with a plethora of ups and downs, highs and lows, ebbs and flows. You can't read this book and not clench your fists or your teeth or keep your eyes dry. You can't read this book and not come away with a newfound appreciation for the gift of life.
This book isn't only a great story, but it is also educational. Trisomy 18/Edwards syndrome is still a mysterious and rare disease that few have heard about or understand. It is a lack of understanding of the disease that lead to some of the dilemmas of the book including when medical staff or caregivers left the child unattended, at risk of overheating or asphyxiation, or gave up on feeding her when she wouldn't decide which food she wanted to eat in a usual amount of time.
What could've simply read as a long eulogy actually reads like a reference or educational text with heart and soul. People can actually learn from this book and gain something from it—knowledge, awareness, inspiration.
It is well-organized chronologically and everything is well-documented. The pictures are beautiful. What's amazing is, we first read this book as text-only, and it was already one of the most powerful things we'd ever read. The pictures just brought everything home.
A few times we've considered and reconsidered the score of this book, mostly wondering if it might be too high. While it is a niche book intended to help a niche audience, that audience will certainly benefit from this. We cannot dock a book like this for having a narrow appeal. Those who need this book will benefit tenfold from both the practical lessons and inspiration within it.
Melissa and Josie are tremendous examples of the power of faith and not giving up. Thank you for sharing Melissa's beautiful story with all of us! This is love.
Get “Living with Trisomy 18/Edwards Syndrome” here!