The quick cut: A girl with a rare condition finds her school and hospital worlds colliding when she ends up in the hospital again.
A real review:
Thank you to Wednesday Books for providing the arc for an honest review.
Living with a disability can be difficult, but it's not the physical toll that can be the toughest part. Sometimes it's how others view or treat you differently that can be the worst. For Ellie, this is a reality she actively fights against.
Ellie Haycock is a girl with two separate worlds. In her school life, she's an average girl with amazing friends and a supportive boyfriend. In her hospital life, she's a girl with VACTERL and a mom whose blog has made her life public consumption. It's two worlds that have remained separate until she starts getting sick again and needs to have surgery. Is her life better in two separate pieces? Or should it remain combined instead?
There are pieces of this story I absolutely adore and thoroughly loathe. I'm a big believer in bringing unique stories to the table that allow others to get a view of what disability life truly looks like. Unfortunately, the main character Ellie ends up being hard to root for with how whiney and self centered she comes across as.
I never knew VACTERL as a condition that existed and reading this ARC made me want to learn more. It's when multiple parts of the body grow abnormally in the womb, including the vertebrae, anus, heart, trachea, esophagus, kidney and limbs. The cause is unknown and it's occurrence is sporadic, with many doctors theorizing it's a combination of genetics and environmental effects factors.
Due to her condition, Ellie has had multiple surgeries and hospital stays throughout her life. She hasn't had an easy go of it from the moment she was born, so it's understandable that she doesn't want to be known for her disability status. She wants to be able to be seen as a typical teenager and not her condition. It's a feeling I relate to so much.
So if Ellie's perspective is something I related to, then why the frustration? It took me some thinking but I figured out where the disconnect is: you read a lot about Ellie goes through and how she feels about. You never really hear about what's it's like from HER perspective though. Without really getting that needed component, it's hard to really 100% empathize with her.
I am happy this story told an important component of the disability journey though: the frustration we often have with the disability affected parents. I know they mean well, but often the ones who do the most advocacy are the ones who drown out our voices and perspective. Some of us want to share our experiences and others just want to live our lives unwatched. That choice of which to do should be ours alone. Not every parent reacts to that request well and seeing how that element works out in this story is very realistic.
A disability representation story that gets important elements of the experience right, but fails to create a likeable lead character.
My rating: 3.75 out of 5