Ellie Haycock is straddling two worlds and not very successfully. As a teenager with VACTERL syndrome, hospitals and surgeries have become, if not a normal part of her life, then a very common occurrence. When she's not having surgeries to correct the disease's many debilitating effects, she wants to live as normal a life as possible - hanging out with her boyfriend Jack, her friend Brooke, winning speech competitions and dreaming of being an actress. Unfortunately, a mysterious lung ailment has her back in the hospital's Family Home among the typically temporary friendships there, contemplating another scary surgery that may (or may not) be what gets her back to her "real" life. What's more terrifying than another surgery, though, is when Ellie's desperate attempts to keep her two lives separate, sheltering her "normal" friends from the cruel realities of her disability and eagerly leaving behind her "hospital" friends in between surgeries threaten to alienate everyone she loves.
Ellie is a vivid, if occasionally frustrating, narrator. Faced with her "normal" friends during her hospital time, she can't bear to share even the smallest tidbit of what she's going through. Instead, she quickly makes a group of hospital friends, including Caitlin, another teen with VACTERLs, Luis with the "little c" cancer, an overly chipper volunteer named Veronica, and prickly Ryan Kim who changes her perspective and maybe...her heart? The unique setting makes fast friendships and perhaps even some romance more believable than they would otherwise be.
This book gives readers an inside look into the struggle of being a constant patient without ever having the luxury of being able to hope to leave the hospital cured. Ellie's frustration with the constant swing of the pendulum between what she considers her to be her real life and her life in the hospital is palpable. Additionally, her mother is one of those parents who shares her whole life story via a blog, that as she grows older, feels more and more invasive. If you've ever seen a blog/Facebook page/Instagram, etc. featuring a very sick or disabled kid and wondered how weird it would be to be that kid, this book is for you.
Ellie Haycock is Totally Normal is an excellent coming of age book with a welcome unique perspective on disability that mingles tough topics like medical autonomy, not being heard by doctors, and privacy with the more typical page-turning stuff of romance and friendship drama. At times it felt like everything was happening a little too quickly, Ellie was a little too obtuse about reality, and the dialogue had a tendency to reference thoughts that were more implied than actually written which left me feeling occasionally like I'd missed something. In the end, though, I was touched by Ellie's discovery that all her lives add up to just one and that there is healing to be found in letting people in.
Thanks to the publisher for NetGalley review copy. Book hits shelves March 5th.
