Ellie Haycock Is Totally Normal, by Gretchen Schreiber

Ellie has been in and out of hospitals all of her life.  And her mother has documented every stay, every surgery, and every success and failure, and publicized it to the world in her popular blog. Now a teen, Ellie isn't so thrilled about having her medical care being broadcast to the general public.  She's trying to have a "normal" life and not let her most recent hospital admission derail her speech tournaments and her relationship with a boy.  To keep things on track, she's devised a strategy of keeping school things at school and hospital things at the hospital.  But a combination of some poor judgment from her mother and a rare comraderie with other teens at the hospital wrecks those careful plans and opens unexpected new opportunities.

Books about sick kids tend to grab you by the emotional jugalar and take no prisoners, and for that reason many readers shy away from them altogether.  Usually at least some of the characters die (and maybe a few will live and get better).  Regardless, they are difficult books to read.  I've been drawn in the past to books that took the formula and did something exceptional to it and thus loved John Green's The Fault In Our Stars for its humor and its tough protagonists.  This book has some particular virtues worth calling out.

First of all, the novel's look at illness feels fresh.  Ellie is a jaded patient with a learned cynicism towards the medical profession.  Her devastating take on doctor hubris and the vanity of nurses (or is that doctor vanity and the hubris of nurses?) won't surprise anyone who's spent a significant time in a hospital, but it's an approach that is surprisingly rare in literature.  Secondly, there's the novel idea of choosing a disease -- VACTERL -- that can't actually be curied.  Rather, it's a disease with a moderate survival rate that helps ensure (spoiler alert!) that Ellie isn't going to have a tragic death.  But she isn't going to be cured either.  And both she and we have to accept that and be comfortable that the ending isn't going to be about Ellie's medical transformation.

In the end, this is not a story about a disease or Ellie's brave fight with it, but a story about Ellie herself.  And while there is some tremedous emotional growth shown when Ellie learns to trust her friends a bit more and open her heart, the really stellar performance is between Ellie and her mother.  For the first half of the book, I really loathed Ellie's self-obsessed and narcisistic mother.  The blog, which is liberally quoted, amounts to endless whining from Mom about how much she's suffered, how unappreciative her daughter is, how hard she's trying to be a good mother, ad nauseum.  But at the same time, Ellie is horribly cruel in her lack of sympathy for her parents in a way that (while you can see where it is coming from) is really painful to read.  It takes a major showdown between mother and daughter for them to break out of their toxic relationship and that provides the most emotional part of the story.  

In other words, this is not a story that will break your heart because Ellie is a fine young woman struggling with a horribly painful and debilitating rare chronic condition.  It is a story that will make you cry because it is about parents and children wrestling with a much more common chronic and debilitating condition:  parents learning how to let your children become adults and children figuring out how to grow into being that adult.   Universal and relatable, and ultimately empowering and hopeful.  Tears, but ones that feel good.