Official description (taken from Goodreads):
In this book you’ll find the the struggles, sorrows, and triumphs of the author after she has two children with a rare and universally fatal genetic disease. As she travels through her hellish journey, you will experience unexpected humor, endless love, and learn how strong one family can be while they walk beside her.
Let’s get real. This description is kind of some bullshit. It gives the sense of a heartwarming novel, filled with platitudes, where our girl Jessica has an epiphany over the course of her “journey.” If you’re looking for that kind of memoir, you’re in the wrong place. This memoir, told in diary form, is RAW RAW RAW and ANGRY. Jessica, for the majority of the memoir, is pissed off as all hell and quite frankly, I don’t blame her one bit. When Jessica starts writing her diary her first child, Ethan, has been dead for two years and her second child, Kaylee, is only a few weeks old. Both of Jessica’s children had the same fatal disease, Epidermolysis Bullosa. This disease, based on what Jessica writes and my own research, is AWFUL and completely heart breaking. Jessica’s experience is different than many other parents whose kids died of terminal illness because no one knew what to do with her kids, and, to top it off, insurance would not cover much of the non-traditional “medical” supplies she needed (e.g., special diapers and blankets). Her babies lived in pain (or in Kaylee’s case, she got to have some meds to help out with that), and there was nothing Jessica could do. Medical care made matters worse because it, by its nature, damaged her kids’ skin even more. No wonder she was so pissed. There are no special walks for EB, or little colored plastic bracelets, or months of the year dedicated to raising awareness. She was totally alone, and already prone to depression. Plus, she had quite a fair amount of guilt about Kaylee being conceived and born, given the genetic risk of her also being an EB baby.
I don’t know if this was done deliberately, but I was surprised to see Kaylee’s (heartbreaking) death happen so early. I assumed that the book would revolve around Kaylee’s illness, and it did for about the first third, but the book is truly about Jessica and how mad and sad she is. It’s about her trying to figure things out, and make sense of her life as a mom of deceased babies, a friend, a sister, and a worker. There are some truly heart-warming moments and Jessica tells the story with a fair amount of humour (as much as possible in this situation), and a real ballsy tone, yet it is not a doom and gloom book. On the contrary, she is simply a pissed off lady and doesn’t care who knows it. Jessica does eventually work through her depression, anger, and depression, but that happens mostly “behind the scenes” as there are huge gaps in her diary where her healing takes place.
I read a review on Amazon where the person was all “oh she’s so mad, why wasn’t this more heart-warming, I couldn’t even finish it” to which I argue that I appreciate that this memoir was not all kittens, unicorns and ponies. This is a book, not only about death, but also about guilt, shame, injustice, and moving on. I am glad Jessica did not censor her anger or try to make the reader comfortable. I was uncomfortable for most of it, but that does not compare to Jessica’s life, or her babies’ lives. Why should she have to cater her memoir to the reader’s comfort? I wish more memoirs were this raw. Then, I had my own moment of judgment in the very last paragraph of the book, and I felt like such an asshole, because who am I? I thank Jessica for writing this book, and putting her raw, open, bleeding heart out there for public consumption.
Read more of my reviews here.