Ellie Haycock Is Totally Normal by Gretchen Schreiber

By Rebecca Parten

Ellie Haycock Is Totally Normal by Gretchen Schreiber is just my kind of book: the main character(s) have some sort of medical condition/ chronic illness/ disability and yet it touches on everyday stuff like friendship, love, self esteem, family dynamics etc. In Ellie Haycock is Totally Normal we meet Ellie, a high schooler with a rare genetic condition that affects both her physical appearance and her internal organs. Her mom runs a blog that has chronicled Ellie’s life from the very beginning. It serves as a way for her to connect with others and raise money to support and raise awareness about the things families experience when raising a child with a disability. This is a huge source of frustration and hurt for Ellie though (more on that later). The reader quickly learns that Ellie is experiencing persistent breathing issues that her local doctor can’t figure out. Therefore she and her mom are going to see a specialist and stay at “The Home” (essentially a Ronald McDonald House) for a bit. The reader also learns that Ellie is very deliberate in keeping her “hospital life” and “life-life” separate. She has hospital friends and nonhospital friends and they don’t know anything about each other.

The majority of the book features her hospital best friend Caitlin as well as a few other teens with varying medical conditions staying at “The Home”. Each teen has their own way of looking at/ dealing with their situation and it’s interesting to notice the differences. In particular, Ryan is a newbie to the whole hospital life thing and has total faith that his doctors will figure out what’s causing his mysterious symptoms. This is the complete opposite of Ellie’s perspective.

She knows all too well that doctors don’t know everything and especially doesn’t trust her newest specialist. She is also used to her mom running the show when it comes to talking to the doctors and making decisions for her (again, chronicling everything on the blog). Undeterred by Ellie’s negative attitude towards the healthcare system, Ryan offers to be her “Medical coach” and a friendship is formed. He encourages her to be more involved when talking with the specialist about the plan he’s suggesting. But, the coaching thing isn’t one sided: Ryan soon realizes that Ellie can provide insight into what it’s like being a professional patient.

As Ellie and Ryan’s friendship deepens she wonders whether keeping her two lives separate is best after all. To complicate things, Caitlin is generally very open about her own feelings and experiences by maintaining a social media presence of her own. All of this leads to friction within the friend group and a lot of self reflection on Ellie’s part.

Going back to the Mom’s blog: throughout the book we see examples of the posts and get a glimpse into her perspective of a mom on a mission to find answers but also come to terms with the social emotional side of raising a child with health issues.

MY REFLECTIONS

I really like that the author was deliberate in making this a medicalfocused story with typical teen issues thrown in. As she mentions in the beginning, finding books like this is rare. While reading this one, I’ll admit I had difficulty relating to Ellie because of how strongly she felt about not sharing her medical side with her non-hospital friends. I don’t have that “luxury”- I’m much more like Caitlin’s character in that respect. But, I can empathize with Ellie and understand why she feels the way she does especially given the fact that she feels like the whole world knows everything about her because of the Mom’s blog. When I was born, the internet wasn’t really a thing. Therefore my mom didn’t have the opportunity to blog and share our experience via social media like many parents do today. If she did, maybe I’d feel more like Ellie who simply wants to be able to control the narrative of her life.

Like I said earlier, the book explores your typical teen issues of friendships, relationships, and growing up but it also highlights other non-typical stuff:

Learning how to be an involved member of your medical team

The balancing act of knowing what, when, and how much to share online

The affect that how a parent views their child’s condition impacts their child’s perception of themselves and the world

The toll on parents and some of the hard choices they must make when raising a child like Ellie All in all, I think this is a very good glimpse into this often hidden world. While similar to The Fault in Our Stars (one of my top favorites) or Five Feet Apart, this book honestly goes deeper. I think it’s a realistic illustration of what it’s like being a teen like Ellie and navigating the road to adulthood. Perhaps this next point is going a little to the extreme but I also think it serves as a warning for parents nowadays about the impact of “oversharing” your child’s story online. Eventually that child is going to grow up and may or may not want certain details online. They may choose to keep things private or they may become the next big social media influencer. The key is they have a choice. Therefore, I could see this as being a great option for both teens and parents to read and then discuss together. Next month’s pick is The Accidental Caregiver by Kimberly Fraser

Next Month's Pick